A Heart of Worship

Peek-a-boo Paige!

2011-09-21T15:24:00.000-07:00

As soon as Eli was cleared of any contact precautions, Paige wanted to go see him. We try to take her on the weekends, when she doesn't have school. Eli gets so excited when she comes for a visit. He lights up and loves to play with her, even from his bed. It is so fun to watch. Here are the two of them, playing peek-a-boo on Sunday.

Witnessing and Experiencing the Power of Prayer

2011-09-20T14:43:00.000-07:00

Thursday night, I (Tanya) left Eli's room at 9:00. He was sleeping soundly and everything was as it has been the past few weeks. Just 12 hours later, I arrived back to his room. Before I even entered the room, I could tell something was wrong. He was ashy blue, not his new normal pink. He was swallowing his breaths, and acting very full. I felt his belly. It was full, even though he hadn't had anything in it for about 5 days. I immediately opened up his g-tube to vent it (basically burp for him) and a bunch of air came out. That's when he started retching and dry-heaving. He can't vomit or burp because of his fundoplication, so it's horrible to watch. Something was wrong. Very wrong.

The nurse had checked his vitals only two hours before and everything appeared normal. He checked his temperature again, and he was running a fever of 102*. Within minutes, Eli's surgeon, a cardiologist, the ICU doctor, his nurse, and the charge nurse were all at his bedside assessing him. Many tests and labs were ordered, medicines prescribed, and poor Eli was just moaning and shivering in bed.

I had been texting Jason as things were happening, and I asked him to post up on Facebook, asking you all for prayers. Your quick response to our request was certainly noticed, even though I had no internet access. I couldn't see your responses here on Facebook, but I witnessed God's answer to your prayers. Before any medical intervention could be given, before Eli had any medicines in his body, his color had come back, and his fever had broke. He was resting rather comfortably in his bed. If I had walked into the room at that moment, I would've thought nothing of it. Both nurses commented how quickly he had turned, even without any medicine. I was able to witness to them telling them we have a network of friends praying for Eli right now. It's because of the power of our prayers that Eli is feeling better.

Thank you doesn't even begin to express how grateful I am to have your support and willingness to drop everything and pray for my son. Many of you sent notes, texts, and even posted our request out to your friends and prayer warriors. My eyes are full with tears of joy because you would do that for him. Thank you for helping me see the power of prayer, and allowing me to share it with a few others caring for my miracle boy.

Please continue to pray. We are still not out of this yet. They have ruled out a bunch of possibilities, but it may take 24-48 hours to get a definitive answer, if we can even get that. He is on a strong dose of antibiotic to stay ahead of anything that may be there.

Our God is the Almighty Healer. I was a witness to His powerful hand today.

Post Surgery Catch Up

2011-09-05T15:50:00.000-07:00

Surgery has come and gone, and we haven't done a very good job of keeping this blog updated, so here are the last three weeks all at once.

The surgery went long, but well. Our surgeon stated "Eli was a complete gentleman the whole time and did what he was supposed to do." We arrived at CHCC at 5:30am. At the anesthesiologist's suggestion, we gave Eli a small sedative to help with the separation and because it would also cause him to forget the events of the morning. Being a "return customer" and at the age where he will start remembering things, they felt it might be a good idea not to build associations between those hallways and the pains of surgery and recovery.

The doctor told us "in about 20-30 minutes, he's going to get a little loopy." Eli has a great sense of humor, but we've never seen him this funny. He became a limp rag doll, and started laughing at everything. It wasn't just any laugh, it was that "stoner" laugh. At one point, he slowly raised his pointed finger up to my face and very gently touched my eye. He then smiled, shook his wobbly head and said, "Noooooooo." Then he looked across the room, pointed to the wall and said "snake!" and laughed. Tanya was laughing so hard she was crying. Then Eli would see her and start cracking up himself.

During the 11 hour surgery, we left the hospital to get lunch. We went to Pismo's Grill. We were completely wiped out. Our enthusiastic waiter made the usual small talk and tried to pep us back up. He asked about our hospital admittance bracelets. They're just plain, fluorescent green, so they don't look like anything in particular. "Awesome bracelets, guys! Are those like, special bracelets? Do you get special privileges?" Tanya and I looked at each other, trying to decide how to answer. "They're for the hospital. Our son is in surgery right now." There was a long, awkward moment, and he pretty much left us alone the rest of the meal. :) Poor guy.

We continued to receive our hourly phone calls from the nurse in with Eli. Most people only have one Superior vena cava (SVC). This vein is what this Glenn surgery was all about. It is how all blue blood returns from the upper body back to the heart, so it can be pumped into the lungs to be oxygenated and turned red again. With this Glenn procedure, they detach the SVC from the heart and connect it so it travels directly to the lungs without going through the heart first. Because of this, stopping the heart and putting the patient on the bypass machine is typical. Like some people, Eli actually has two SVCs. This is one of the only breaks he's ever had his entire life. It allowed them to isolate and work on one SVC at a time, while the other maintained full function. Because of this, they never had to stop his heart and he never had to be put on the bypass machine.

We watched him being wheeled between surgery and ICU for recovery about 7:30pm. He looked very surprisingly good! Within another hour, we were able to be in the room with him. Considering what he'd been through, he honestly looked great! He had great, pink color, and everything was stable. He only had a small issue with his heart rate and JET (junctional tachycardia... out of rhythm and accelerated heart rate) for the first night, but nothing they didn't expect and nothing that didn't control itself in very short order. He was extubated after one week, and continued to make good, solid progress the following week. We give the credit to Dr. Adam Holmes. We spoke with him about trends we've seen in Eli over the last two years, especially in regards to fluid retention and extubation difficulties. Because of this, he approached Eli's care very aggressively and pro-actively. Those first two weeks were the best recovery Eli's ever had!

Just as it looked like he might actually go home after two weeks, which would be normal for a Glenn... they found a big pocket of fluid and had to put a chest tube back in. That morning, they collected over 250ml of fluid out of the left side of his chest! This boy can retain fluids like nobody's business, and this is exactly what our concerns were as we entered into this procedure. As I write this, we are at the end of our third week in recovery. Fluids continue to rise, so today, they've added a second chest tube back in. Once again, he immediately dumped more than 200ml of fluid, this time out of the right side.

As I write this, he remains in PICU... just hanging out. He's in good spirits, all things considered. He's so much stronger than we are. He's a role model patient. He's so mellow and easy going. We are able to laugh with him on occasion. The doctors comment on his incredible demeanor. The nurses fight over who gets to care for him. Everyone tells us how cute he is, and everyone who had him during his first surgery can't believe how big he's gotten. He's such a shining light in so many peoples' lives.

We'll write more, and share some pictures of these last weeks. Thank you for your patience as we find time to do so.

Next Surgery Moved Up To August 16

2011-08-08T20:58:00.001-07:00

Just a quick update on scheduling: A slot opened up in the surgeon's schedule, so we have been moved up to August 16 for Eli's next surgery, the Glenn. While our natural reaction is to panic, we also recognize this frees us from one of our biggest concerns leading up to Eli's surgery. Paige starts school August 17th. We were extremely concerned about what her heading out into public could mean for Eli's health. Now, we need not worry. We only need to keep Eli safe for 8 more days. Because of this, we will "hunker down" into full winter isolation mode. Nobody in, nobody out, unless absolutely necessary.

See you all soon! Please continue to pray as faithfully as you all have been doing throughout this entire process.

Finally Our Time

2011-07-31T11:48:00.001-07:00

Two years ago, Eli had his first cath lab procedure to check the pressures in his lungs and the function of his heart. This test was the first of three failed caths, proving he wasn't ready for the next phase of surgery, the Glenn Procedure. A couple weeks ago, on July 13, exactly two years since his first failed cath, we took Eli in again for another of this same cath lab procedure. The cardiology team likes to check periodically so they can gather data and better understand what Eli's heart is doing. We prepared ourselves for another failure. We were hopeful, but expecting to hear he wasn't ready...again.

We've become accustomed to this rut, this waiting game, this constant trudging through quicksand that has come to represent Eli's medical path. He should have had this Glenn Procedure two years ago, but the blood pressures in his lungs has always been too high. Last year, his numbers placed him "in range" for the Glenn, but the cardiology team agreed it was simply too high risk. His numbers were simply TOO marginal.

This year, he's still marginal, but better than ever before. The cardiology team doesn't feel his numbers will get any better, and believes now is finally the time to proceed with the Glenn. Eli will finally have his second of three open heart surgeries. We've waited two years to be able to say this. Now that it's here, it's scarier than we might have imagined.

Eli is scheduled for his Glenn on September 13, but we are also on the "short list" for any opening in the coming two weeks. Our surgeon leaves the country in the second half of August, and our cardiologist leaves the country in the beginning of September. If we don't fall into an opened schedule by somewhere around August 10, we know we will be on hold all the way out to September 13. Either way, within the next six weeks, Eli will head in for his second major surgery.

Eli is on the verge of walking by himself. He walks with a single finger's support for balance now. He cruises furniture as fast as any kid. His language is finally exploding. He's picking up new words all the time, and his speech improves with each day. He's an absolute ball of happiness, always smiling, laughing and spreading joy everywhere he goes. He's grown from the feeble baby into quite the amazing little boy.

On February 20, 2009, we handed over a 2 day old sedated baby who we'd never seen with open eyes or without a breathing tube. While this was no easy task, it doesn't begin to compare to the thought of giving the surgeons our 2 1/2 year old son who speaks, lives and loves with us.

The day we'd begun to think would never come... has finally come. Eli is heading in for his second open heart surgery. As supportive as you all have already been, we're going to start leaning on all of you for that support again. To all our prayer warriors, you've been so faithful for so long. Please join us again as we place in God a trust as we never have before.

Here's our most recent picture of Eli, sitting in Pre-Op before his cath lab.

Outside!

2011-05-10T10:28:00.000-07:00

Eli loves to be outside. He would be outside all day long if we allowed him.

He loves to dig in the dirt.

He loves to draw with his chalk.

He loves to slide.

He loves to watch the koi.

He is all boy and we love it!

Paige's New Bike

2011-03-26T20:29:00.001-07:00

Today, Paige got her first bicycle! We went to Toys-R-Us and she rode all the bikes in her size. She decided on a purple bike with flowers and a pink seat. We took the bike home, put it together, and she was immediately off on her first adventure. Before the bike was even complete, she was asking to ride to her friend Kaylynn's house, because she had written her a letter and wanted to deliver it. Here's a short photo journal of our afternoon.

Paige and Daddy building her new bike.

Paige helped with the seat...

...and the purple pedals!

Once assembled and tires aired up, outside we went! This is Paige hopping up on the bike for the first time.

And we're off!

It was a little chilly outside today, so Mommy helped her with her vest.

Then we were off to Kaylynn's.

Bye bye, little girl.

Paige and Kaylynn were very excited to see each other. In fact, Kaylynn had also written a letter for Paige!

Then Kaylynn picked a flower from the garden, and sent it home with Paige.

Headed back home.

As she became more comfortable on the new bike, she began to ride faster and faster. Look at those handlebar tassles fly!

Eli's Turn

2011-03-23T09:15:00.000-07:00

We just celebrated Eli's second birthday last month. As we reflected on his second year, we are so grateful it was spent mostly at home healthy, and not in the hospital much like his first year. In fact, we only spent one night in the hospital last year. What an accomplishment!
Here is an much overdue update on our little miracle man:

Physiologically: Eli last had a cath study done in June. Once again, he failed, showing he wasn't ready for his next surgery. He still has pulminary hypertension, where his lungs have too much blood pressure. The cardiology team decided since he growing, developing, and not showing any signs of heart failure to let him continue to grow in hopes that his lung pressures will decrease. In January we had a checkup with our cardiologist. While there we had an echocardiogram done. This showed no changes since his last one, just before the cath. So it looks like his pressures are still too high. We go back for another checkup in a few months. It will be decided then what the next step is. There are no dates set, we are just letting Eli tell us when he may be ready. We just know that the next step will be another cath study.
One exciting change for Eli is he no longer needs oxygen. We have a monitor that tells us his saturation levels. Most of us are 98%. Eli's target range is 75-85%. When he drops below 75%, we have to supplement with oxygen. When he first came home, he needed oxygen all the time. And we were constantly adjusting the amount of oxygen because his levels were very sporadic. As he has grown he has changed to needing it just at night when he was sleeping and now he never needs it. He hasn't used oxygen in at least 6 months. It really is liberating not having to worry about him tangling himself up in oxygen tubes and monitor cords as he is rolling and crawling around. We still put him on a monitor when he is sleeping, since we can't watch him, but he hasn't alarmed in a really long time. We've asked his cardiologist, surgeon, and pediatrician what this means and why he no longer needs oxygen. All of them have said, "He just doesn't need it. We can't explain why. We don't know why. It's not a sign of anything." Okay. I guess we'll just enjoy being "cordless".
Developmentally: After Eli's pacemaker was installed over a year ago, we noticed big changes in him developmentally. He finally had the strength to sit up since he has help with his heart. For many months Eli would roll and scoot on his back to get to places where he wanted to go. He could sit by himself, but it took him a long time to transition from sit to laying and how to get back up again. With exercises given to us by our physical therapist, Eli finally learned how to transition in December. Not a week later, he was crawling. In the 2 months he's been crawling, he's gotten so much stronger. He's fast! Now he is getting on his knees, cruising furniture on his knees, and is just beginning to pull up to stand on things. It's now a race between him and Samuel to see who is going to be walking first.
Just as our physical therapist said, once Eli progresses with his motor development, his verbal will quickly follow. Eli is talking up a storm! Unfortunately we don't understand him most of the time. He has a few dozen words and phrases that we have translated. Everyday we are able to figure out a new word or two. Just this week he has started to repeat a word. If I guess wrong, he'll shake his head and repeat it. When I finally figure it out he squeals in excitement. He is also understanding us better, too.
Two of Eli's favorite things are cars and being outside. If he is inside, you'll probably find him laying on the floor pushing around a few of his many cars, trains, buses or thing with wheels. Given the opportunity, Eli will be outside. He loves to explore our backyard. He likes to throw dirt, crawl in the grass and climb on the rocks. He got a tricycle for his birthday, and since he can't pedal yet, he loves to be pushed around on it. We take walks as often as we can, and he'll just narrate everything he sees along the way.
There are many days that I forget that Eli is so sick. He behaves normal. He is a boy. He is getting stronger. I'm so thankful to see these changes on the outside. I still pray and beg that God is healing him on the inside.

Overdue

2011-03-03T09:50:00.000-08:00

So if we were library books, we'd have some serious overdue charges on our blog. Now that I think about it, I think we actually do have charges on our actual library account...oops! :) Anyway, I'm going to try to bring you all up to speed with our family. Obviously I can't do it all at once, so I will try to do it in pieces.

Since today is Samuel's 6 month birthday, I'll start with him. Samuel is the easiest baby yet. Paige was easy, he is easier. He is always happy. Always smiling. Loves to giggle and is very ticklish. When he's not smiling, he's sleeping.

He is also the first of our kids to acutally hit developmental milestones on target. Eli is delayed for obvious reasons. Paige was content to just sit. She didn't really pull to stand or even become mobile until after her first birthday. Samuel is rolling over and has found that he can get to things he wants this way. I often find him across the living room from where I left him. He is almost sitting independently. He'll have that down here shortly.

Samuel is a big boy, but we knew that when he was born at 8 pounds 10 ounces! Last time we checked he was 17 pounds (and that was over a month ago). I'm sure he's pushing close to 20 now. We'll find out for sure next week when we take him to the pediatrician.

Samuel has been a great addition to our family. He certainly completes us. Paige and Eli love him tons. They love to interact with him and make him laugh. We are certainly more complete with him here.

Hello???

2011-02-28T23:07:00.001-08:00

Hello?

Heellloooo?

Is anyone there?

Congenital Heart Defect Awareness Week

2011-02-08T09:48:00.000-08:00

February 7-14, 2011 is Congenital Heart Defect Awareness Week. It's strange how you don't know about something until it's staring you straight in the face. I had no idea that heart defects are the #1 birth defect! Here are some quick facts about CHD:

Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation
This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
Though research is ongoing, at least 35 defects have now been identified.
4-8% born with CHD have Hypoplastic Left Heart Syndrome (Eli's defect)
4-10% born with CHD have Atrioventricular Septal Defects
8-11% born with CHD have Coarctation of the Aorta
9-14% born with CHD have Tetralogy of Fallot
10-11% born with CHD have Transposition of the Great Arteries
14-16% born with CHD have Ventricular Septal Defects
Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes

Raising awareness about CHD is becoming an important part of my life. Had we not known about Eli's defect before he was born, it's likely we would not have him today. I feel we are extremely lucky that the ultrasound tech was screening closely and found his broken heart. There are many moms and dads out there grieving over a broken hearted baby that was undetected.

Will you join me in raising awareness and support of CHD? Our local chapter of It's My Heart, an organization that advocates and provides support to those affected by CHD, is having their annual Awareness Run/Walk this Saturday. We have created Eli's Fourth Chamber in honor of Eli. You can join our team by walking, running, or even cyber walking if you are long distance. Or if you feel like just donating to Eli's team, you can do that as well. Eli appreciates the support you have given him over the past 2 years and you continue to give. The support here will help raise awareness and support of other heart families here in the area. Thank you!!

Paige's Prayer

2011-02-05T21:05:00.000-08:00

Every night before bed, we pray with Paige. She usually begins with the same things, then is thankful for one special or fun thing she did that day. Lately she has been expanding on her prayers and is saying the cutest things! It really just melts our hearts.

Normally she says, "Jesus thank you for Mommy, Daddy, Paige, Eli, and Samuel. Thank you for making Eli's heart much better. And thank you for...."

2 nights ago she says, "Jesus thank you for Mommy, Daddy, Paige, Eli, and Samuel. Please make Eli's heart much better because you're in it."

Tonight she says, "Jesus thank you for Mommy, Daddy, Paige, Eli and Samuel. Could you please make Eli's heart better? Let me know."

We can't help but giggle through our prayers with her. She is so sweet.

30 Days of Thanksgiving: Day 23

2010-11-23T23:40:00.000-08:00

'Nuff said! :)

30 Days of Thanksgiving: Day 22

2010-11-22T11:25:00.000-08:00

This morning we had a check-up with Eli's pacemaker, and we didn't even have to leave the house! In fact, we were still in our pajamas! Technology is awesome. We have a device here at home that has a modem and a pacer reader. It reads the data recorded on the pacer and then transmits it directly to our cardiologist through the phone lines. I'm so thankful this technology exists so we don't have to make frequent regular trips to CHCC and his cardiologist.

30 Days of Thanksgiving: Day 21

2010-11-22T11:21:00.001-08:00

Grandma and Papaw came for a visit on Sunday. They played with Eli. He showed them how he can say thank you, spin in circles, and told them some great stories. Paige played paper dolls with Grandma and Play-doh with Papaw. Samuel woke up for a short bit and cooed and smiled for them both. We had a great visit. And ate some yummy Mexican food. I love it when the kids can see their grandparents!

30 Days of Thanksgiving: Day 20

2010-11-22T08:01:00.000-08:00

For 6 months this year, Jason was working 6 days a week. Only when Samuel was born, did he finally have a Saturday off since March. He took 6 weeks off but when he returned to work he went back to a 6-day week. The past 2 Saturdays Jason has been home. It's so nice to have him home for 2 days instead of just 1. I'm thankful for the overtime he had, especially since it's so rare with his job. But I'm even more thankful to have him home and rested for 2 days on a weekend.

30 Days of Thanksgiving: Day 19

2010-11-22T07:56:00.001-08:00

Weekday mornings, I wake up with Jason, make him a lunch and send him off to work. After he leaves, I usually get back into bed and try to get an hour or so more sleep. Paige is pretty good about letting me sleep more. She knows that she isn't supposed to wake me up until it's 8:00. To her, that means the alarm clock starts with an 8, and often it's more like 8:30. Lately she's been playing with Eli and letting me sleep even longer. I usually wake when Samuel is crying to eat. Friday morning was a little different. I heard a soft whisper, "You're the best!" and then tip toes creeping out of the room. How could I not smile and be warmed by such a sweet awakening!
I'm so thankful of sweet moments from the sweet girl that we have. Thanks Paige for making my Friday start perfectly.

30 Days of Thanksgiving: Day 18

2010-11-18T22:00:00.000-08:00

Just over 2 years ago, we learned of Eli's heart defect. Exactly 21 months ago we began his journey. We have had many ups and downs in the past 21 months. Of all the things that Eli has taught me over the span of 2 years, the thing I'm most thankful for is his joy. Eli is a happy boy. Rarely is he fussy or cranky. The pictures you see are genuine Eli. Often smiling. Often laughing. Often babbling away. He is my daily reminder to find joy in the trials. His heart is working hard to survive. His lungs are fragile and weak. But that's all on the inside. You can't see it. On the outside, you see a fun, happy, almost 2 year old boy. Thank you Eli for showing me and reminding me to find joy in the little things. No matter how tough it is, there is joy somewhere. All I have to do is look into your face. You are my joy.

30 Days of Thanksgiving: Day 17

2010-11-18T21:54:00.000-08:00

Last night I got to watch Cinderella while sitting in the presence of Cinderella herself. Paige put on her Cinderella dress (which I didn't know still fit her) and came out prancing around. She spins and twirls her way into the kitchen to her daddy and says, "Daddy will you be my prince?" I witnessed Jason's spine fall out of his back! :) Then we sat together and watched her favorite movie. After the movie she asks when we can go to Disneyland to see Cinderella in her pretty blue dress and "I want to show her my pretty blue dress too!" Some day, Paige. Some day.
It's moments like these I'm thankful for Paige's innocence and easy-going personality. She really is a sweet girl. Thank you Paige for being our princess!

30 Days of Thanksgiving: Day 16

2010-11-17T09:53:00.000-08:00

Several things happened yesterday that reminded me to be thankful for Children's Hospital. First, a former schoolmate of mine had her 3 year old daughter diagnosed with leukemia. They are in the beginning stages of treatment for her. Secondly, I caught a short segment on a talk show about a teenager who had a rare form of bone cancer. For treatment, she had to travel 6 hours to St. Jude hospital. This made me realize that we only travel 40 minutes to get great care for Eli. I'm so thankful that we have a great hospital with all the resources we need just a few minutes away. Eli spent the first 4 months of his life at Children's. I can't imagine how difficult that would have been if we had to travel to LA or San Francisco for that. There are times when we can't wait to get out of the Central Valley. But, honestly, Children's Hospital is one of the reasons we stay anchored here.

30 Days of Thanksgiving: Day 15

2010-11-17T09:48:00.001-08:00

We have many projects going in the house. We are still working on the painting and trimming in Paige's room. We are painting the trim on the outside of the house, which includes the entire underside of the patio. We are also in the beginning stages of a kitchen remodel. Jason is sanding down the cabinets to refinish them. A lot of days, Jason comes home from work and winds down by working on a project around the house. Monday was different. Instead, he came home with Toy Story 3. We had dinner together, and then all 5 of us sat in the living room and watched a movie. It was a spontaneous evening and it was wonderful! Eli sat in my lap cuddling with me for a while. Paige sat in her daddy's lap cuddling with him. Samuel slept in his swing, but he was in the room with us. I'm so thankful for spontaneous moments with my entire family. It was a great evening!

30 Days of Thanksgiving: Day 14

2010-11-14T22:17:00.001-08:00

Today we had visitors. The kids' Nanna and Nanno (my mom and her husband, Ceasare) were able to come for a visit. They don't get to visit often, so we treasure the times when they do come. When they first arrived Paige was still napping so they spent some quality time with the boys. Eli told them lots of stories and Samuel slept in Nanna's arms. When Paige woke up they read stories, built bridges with blocks and gave each other lots of hugs. I'm so thankful for the visit! Paige loves her Nanna and Nanno. She misses them lots during the school year. We look forward to the next visit.

30 Days of Thanksgiving: Day 13

2010-11-13T17:55:00.001-08:00

Monday, a very important man passed away. A man who we've never met, but has basically saved Eli's life. Dr. Richard J. Bing was a leading cardiac researcher in the 50's and 60's. He explored many things that Eli has benefited from. I'm thankful of leading scientists like Dr. Bing. Because of their experiments and knowledge, Eli is alive. If you'd like to read Dr. Bing's full obituary, click here. He was not just a cardiac researcher, but also an author and composer. What an amazing man! Thank you Dr. Bing!

30 days of Thanksgiving: Day 12

2010-11-13T08:31:00.000-08:00

Jason took the day off today, giving him a 4 day weekend. It's so nice to have him home. We all miss him so much when he is working, especially Paige. I'm so thankful that he has some flexibility with his job and he is able to take days off to spend time with his family.

30 Days of Thanksgiving: Day 11

2010-11-11T09:57:00.000-08:00

Today is Veteran's Day. Of course today I'm going to be thankful for all the Veteran's who have served or are serving our country. Thank you for your sacrifice for my freedom. We have several Veteran's in our family who have served in the Gulf War, Vietnam, and Afghanistan. Thank you isn't enough.

Today I continue to pray and be thankful for those who are still serving overseas.

30 Days of Thanksgiving: Day 10

2010-11-11T09:54:00.000-08:00

Tonight Paige, Daddy and I had a little movie night. We all cuddled on the couch with some popcorn and watched a movie. Paige even got to stay up a little later than normal. I'm so thankful that we can spend time together with just Paige. She deserves a little time with just us.

30 Days of Thanksgiving: Day 9

2010-11-09T22:40:00.000-08:00

It's been several months since Eli has had any food orally. Sometime in the spring, he began choking and gagging on his bottled formula. Fearing he'd aspirate, we stopped feeding him orally until after his heart cath in June. Shortly after, we tried again. Only to have him still choke. We had a swallow study done and saw an Ear, Nose, Throat specialist to make sure everything was okay. Since Eli has a mid-line defect, we needed to be sure his swallow, tongue, tonsils and throat were not affected. Everything came back normal, telling us all of Eli's swallow issues can be overcome with some therapy.
First step: getting used to food. The texture. The taste. His occupational therapist recommended we start with some pureed sweet potatoes on the tray. Tonight we experimented with that. We gave him a spoon and a dallop of potatoes. He immediately stuck his finger in them and took it straight to his mouth. "mmmmm!!!" he says! It was fun to watch him smear the potatoes, lick his fingers, put some on the spoon, lick the spoon. He obviously does not have an aversion to food. This is huge! It's a major obstacle we won't have to overcome.
And that's exactly what I'm thankful for. I'm thankful Eli likes food. I'm thankful he doesn't mind having things in his mouth. I'm thankful for the first step of getting him to take in some nutrition orally.

Also: Be sure to look back to Day 3. I added a picture of Samuel!

30 Days of Thanksgiving: Day 6, 7, and 8

2010-11-08T09:15:00.001-08:00

This weekend was busy with family visiting from out of town, so that's why I'm a little behind. And that's exactly what I'm thankful for, too. My dad and Deb flew in from Montana Friday morning and spent the weekend with us. They were finally able to meet Samuel. Saturday, all of us went up to the Fall Festival at Shinzen Gardens (the Japanese garden in Woodward Park). I'm thankful for the beautiful fall weather we had. The rain held off just long enough for us to enjoy the park, the beautiful fall colors, and listen to the music. It really was a great chance for our family to get out.

I'm also thankful for the great quality time we got to spend with Dad and Deb. They really had some great chances to bond with all the kids. The greatest thing was how sweet and taken Eli was to his Grandpa. Saturday night, Eli was really cuddling and just chatting up a storm with him. It was really fun to watch Eli interact with someone so intimately. I'm so glad they were able to come for the weekend!

Today I'm thankful for our home. Although many people see it as small, I love it's size. I love the fact that it forces us to live simply. We don't have a ton of room to store things, so we live without. It makes us live inside our means and not get stuck on material stuff. I'm thankful that we have been blessed with a roof over our heads that we love and live comfortably in.

30 Days of Thanksgiving: Day 5

2010-11-06T08:03:00.000-07:00

I'm thankful for the little developments and changes I see in the kids everyday. Today Samuel giggled for the first time. And Eli was up on his hands and knees for the first time. I'm so thankful that I have a hubby that works hard which allows me to stay home and be a part of all the firsts. Today reminded me how precious each moment is and made me so thankful that I can be here to be a part of it all.

30 Days of Thanksgiving: Days 3 and 4

2010-11-04T20:07:00.000-07:00

So I already missed a day. Oops! But don't think that I wasn't thankful all day for Day #3!! On the third, I am thankful for my youngest Samuel. He is 2 months old already! I'm thankful that he is here and completes our family. He is such an easy baby. He rarely cries, and mostly sleeps. When he's awake he's cooing and smiling. He is such a handsome boy! Samuel is a true blessing and shows God's love and creation to me everyday. My favorite thing about Samuel is that he loves to cuddle and sleep on me. Paige and Eli never really did that. I finally got my cuddly baby! :)

For Day 4, I'm thankful for the little outing I got with Paige. She's been a little needy lately, especially since Daddy went back to work. We decided she needed some alone time with one of us, and she chose to go to the shoe store with me over Home Depot with Dad (that's my girl!). We went to Payless, just us two, and she was allowed to pick out some new shoes all by herself. She chose some glittery pink sneakers with blinking stars! They are flashy and so much fun! She was giggling the whole way home. I'm so thankful that we both got a little break, and finding joy in Paige's joy.

30 Days of Thanksgiving: Day 2

2010-11-02T13:26:00.001-07:00

Today I'm thankful for something simple. I'm thankful that all 3 kids are beginning their naps at the same time. I usually get about 1 hour of kid-free time a day. Today looks like I may get 2 hours! Yippee!! Now I'd better get off the computer to make good use of my extra hour.

Lord thank you for giving me a little extra quiet time today. It's one of those days where it's so needed. Thank you for providing all that we need!

30 Days of Thanksgiving: Day 1

2010-11-01T22:48:00.000-07:00

We all know that we celebrate Thanksgiving in November. It's always a chance to become aware of your blessings and acknowledge what God has done in our lives. I've decided for each day in November, I'm going to name one thing that I am thankful for.

November 1, 2010: I'm thankful for my first born, Paige. Her birthday falls on the first, so it's only fitting I'm thankful for her on her 1/4 birthday. Paige is an extraordinary girl. She's smart. She's witty. But best of all, she's easy-going. These past 2 years have not been easy for any of us, and she's been a champion of rolling with the punches. I'll never forget her often asked question when Eli was in the hospital. She'd often wake up in the morning and ask, "Where's we go today?" She was so used to going somewhere in the afternoons so we could go visit Eli. She never grew tired of being in different places everyday. And now that we are shut-ins, she never grows tired of being home. She loves both her brothers and is an amazing second mommy. God is doing great things in her heart, and she's told me she wants to be a doctor when she grows up. The way she cares for her brothers, I know she'd be great at it!

Lord, thank you for blessing us with Paige. She is tender, intelligent, and perfect for our family. Your work in her never ceases to amaze me.

Family Fun

2010-09-24T22:14:00.000-07:00

Since becoming nearly complete shut-ins, family outings are challenging. No, they are nearly impossible. We always have to look for ways to take the family out to experience the world, yet be safe from illnesses around us.

This past weekend presented us with one of those rare opportunities where getting out and keeping safe were both possible. ClovisFest begins their days with a hot air balloon launch early each morning. So Sunday morning, we gathered up the kids at 5:30 and headed up to Clovis to see the launch.

We watched the sunrise over the mountains as we drove up. Paige found that really fascinating. Here we are all bundled up waiting for the balloons to inflate.

It was fun to teach Paige how the balloons worked. She loved to see the fire go into the balloons.

Eli sat and watched quietly, yet completely engaged He was fascinated with the balloons.

We had a great time watching the balloons! Someday, I'd love to go for a ride in one.

Welcome Samuel Joseph!

2010-09-05T22:50:00.000-07:00

You're sure to have noticed the complete lack of updates over the last few weeks. Life has been extremely busy, and keeping everyone updated has taken a back seat to other priorities. So... the most important news of the last few weeks:

Samuel Joseph was born on Friday, September 3, 2010 at 8:42am. He weighed in at 8lbs and 10oz and measured 20" long.

Wednesday afternoon, Tanya had her weekly pregnancy checkup and was told by her doctor "You're not making it through the weekend. And this baby's going to come quickly, so don't hesitate to come at the first sign of regular contractions."

Thursday evening, Tanya knew it was time. We've struggled with a middle name for a boy. Here, at the 11th hour, we still hadn't decided on one. Tanya had the kids packed up in the car, headed to a friend's house where they'd be staying the night. Along the way, she asks Paige "What do you think we should name the baby if it's Samuel?"

"Samuel Joe," says Paige.

Tanya told me, and we laughed at Paige's humorous ways. She always makes us laugh. Then, for some reason, the name seemed to work. Tanya had just finished reading a study about Joseph's story in the Bible. It's a great story of of God's faithfulness and of redemption. Samuel Joseph. And
it stuck. If it was to be a boy, his name would be Samuel Joseph. And that's exactly what happened. Paige officially named her youngest brother.

Everything from there went relatively quickly. We checked in to the hospital around 11:00pm. She got her epidural around 3:30am, water broke a little after 7:00, and Samuel arrived at 8:42am after only a few minutes of pushing. Tanya's epidural wore off around 8:00, and it was too late to give her another dose. Poor Tanya... she gave birth to Samuel with no pain management! I'm completely amazed by how strong she is. After waiting the mandatory 12 hours for a hearing test and blood work for Samuel, we were on our way home the same day!

Here are the first few photos of the little guy. In the hospital, and at home.

Paige: 4 years, Eli: 18 months, Samuel: 34 hours

Mic Check

2010-09-04T19:38:00.000-07:00

Thump, thump, thump.

{the squealing sound of feedback}

Is this thing on?

... more to come. Thanks for listening.

My Trip to Holland: A perspective from a mother

2010-07-17T22:06:00.001-07:00

A friend of mine shared this story with me, and it really gives you a great feeling of what we have gone and continue to go through. I thought I'd share, since so many of our readers can probably relate in some way or another.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo. David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

By: Emily Perl Kingsley

Happy Birthday Paige!

2010-07-01T07:24:00.000-07:00

4 years ago, we were blessed to be called parents with the arrival of Paige Elizabeth. Only other parents can understand how your life changes in an instant with the birth of a child. She brings all of us so much joy and happiness, and we see God doing amazing things in her life already. Happy Birthday Little Monster. We love you so much!!

July 1, 2006

1 year

2 years

3 years

4 years

Our Little Hero!

2010-06-23T11:24:00.000-07:00

Yesterday, I (Tanya) stepped outside for a brief moment to close the gate to the backyard. During that time, Eli began to have a reflux episode and was beginning to struggle to breath. Paige was inside and noticed, so she came out and said to me, "Mommy! Eli needs oxygen!!"

After getting Eli through his episode, I was very intentional in letting Paige know how proud I was of her. She got lots of praises and hugs, just to be sure she knew how much of a hero she was in helping Eli out. During this time, she says to me, "I saw he was choking and came and told you quickly!" She makes me more than proud!

Jason and I are so proud of the little hero that Paige is. She is always watching out for her brother. We are very thankful to how in-tune she is to Eli's care. She is our little nurse and is so responsible and loves to help us take care of Eli's needs. Yesterday's event made us realize even more what a special gift she is in our family and we are very thankful for her! She's really is Eli's Hero!

Wedehase on Safari!

2010-06-15T17:15:00.000-07:00

First, a warning. There are a lot of pictures in this post, and the blog doesn't really afford great management or control of photos, so things may be a little jumbled. We'll see what happens. Don't forget to click on each image to see it full screen.

This weekend, the Wedehase family went on safari. Safari West, that is. However, our first stop was in Fairfield, for a Jelly Belly factory tour! We got off to a late start, so we arrived at the hotel around 9:00pm. We unpacked. What a process this is for us now that we're germaphobes! Then we all went straight to bed. We'd be up for a long day on Sunday.

Sunday morning, first stop... the Jelly Belly factory! Paige was so excited to see how jelly beans were made, and to try all the wonderful flavors. It's hard to say exactly what Eli was doing in the picture below. We think maybe he's turning into a sun worshiper.

Once inside, we tried some samples. We pretty much had to force Paige to try a piece of fudge. We had been running so late, we ended up skipping breakfast, so she was in a pretty grumpy mood. Seeing the factory store with all the gifts and, more importantly, candy, she began to cheer up in a hurry. Here, she was amazed by all the gummy worms.

More colors! More candy! I want them all!

Paige and mommy start the tour. To the right, we weren't supposed to have cameras on the tour. With Paige being so cute, hanging onto mommy's neck, I decided to flex the rules a little. They weren't in production, so I don't think I've compromised any secrets in the background.

Safari!
First step: Check in and unpack. The tents were really wood framed buildings with canvas walls. Electricity, running water, and a full bathroom were standard. It was great! Our tent was directly across the path from the giraffe and crowned crane enclosure. We were serenaded by the sound of African wilderness all night. Here, the entire family sits at the front steps of our weekend home.

Paige had a great time exploring ("Daddy, let's go sploring!") and seeing all the animals, real and man-made.

Our precious little children. They love each other so much.

After dinner, we did some more "Sploring." We found baby "falingos," monkeys, and all sorts of other animals. We even saw a baby giraffe that was born that very day! Otto, that was his name, was already taller than daddy. Here, the wild Paige monster is held back by some black bamboo, just like we have at home. While we were out exploring, mommy was getting big hugs from baby brother Eli. He's becoming quite a cuddly little boy.

Paige and daddy roasted marshmallows at the campfire. We've had lots of practice with this at home. We've roasted s'meeps so many times over this last winter, so she's a real pro. What's a s'meep, you ask? It's like s'mores, but it's made with Peeps, those little, yellow, sugar coated marshmallow chickies we all have to endure for Easter. They're horrible treats, as packaged, but it turns out they're AWESOME in a s'meep. The sugar coating caramelizes and offers a wonderful crunch over the top of the gooey marshmallow goodness. The orange ones are the best. But I digress....

Next to our tent was a small pond with Lemur Island in the middle. 4 ring-tailed lemurs slept only feet away from our tent, and we had a great time watching their morning and evening activities. Paige took a walk around the pond and found another really cool giraffe sculpture. And of course, she's become anything but shy in front of the camera.

Safari, Day 2
Breakfast time in the dining room, then off to our departure point. We rode in large, off road safari trucks. Here, Paige poses on the truck. No, she wasn't upset. The sun was in her eyes, and she was doing the best she could to keep those eyes open.

To the left: Dozer was a friendly giraffe! He wanted to have an up-close look at Eli. As we traveled through our safari, we came across many animals. We saw rhinoceros, wildebeest, cape buffalo, oryx, addax, ostrich, elan, red river hogs, warthogs, and so many more. To the right: Eli and I on safari, with impalas in the background. We learned they can leap 10 feet vertically and 34 feet horizontally in a single bound!

For days, Paige wouldn't stop talking about the zebras. They had a dazzle of 16 zebras, and we were lucky enough to have come upon them all in the same place. And, while zebras are notoriously skittish and tend to flee at a moment's notice, these 16 zebras all maintained their position as we approached. Some were only an arm's length from the truck.

After our tour, we had lunch, and headed out. Before we left, Paige wanted to climb a huge, lumpy tree. Once up there, she made silly faces for the camera.

We took Highway 101 home, so we could swing by the Golden Gate bridge. There's a great photo spot just on the north end of the bridge. Unfortunately, we passed by it just as we recognized it (it's unmarked). So we made an adventure of the trip across the bridge itself. Then we made our way through San Francisco, though we never left the car. We even took the kids up the HUGE hills and down Lombard Street, since we were so close. Unfortunately, we don't have any pictures of any of this.

Great getaway? YOU BET! Priceless.

The Many Faces of Eli

2010-05-31T22:11:00.000-07:00

Since it had been so long since we'd taken pictures with Eli, we decided to have a mini photo shoot today. He's always laughing and always smiling, it's just so easy to get a good picture. Here, we'd like to share a few of the faces of Eli, and ask that you continue to pray for positive results from his next cath lab, June 7th.

Living with No Regrets; From the Heart of a Heart Mommy

2010-04-27T09:04:00.000-07:00

This past winter has been a challenging one in many ways. As you all know, we have been living as shut-ins since September. We have chosen to do this to keep Eli healthy. I’m so proud to say that since then, Eli has NOT been sick once! When you stop to think about it, it really is a miracle. Most pediatricians will tell you that kids will get an average of 10-12 colds a year. Eli had one in August, and none since! WOW!! We receive some relief in knowing that our hard work is really paying off.

While living as shut-ins, I know that we have offended many, hurt others, and broken some hearts. We have said "No" to visitors more than we could have ever wanted. We've even suffered permanently broken relationships because of family who do not understand our measures. Trust me, there is nothing worse than telling the kids’ grandparents they can’t come see their critically ill grandson. Jason and I haven’t been to a social function since September. No birthday parties, no Christmas parties, no church, no family gatherings….nothing! It has been so incredibly difficult not to be a part of the social world. I have learned to do most of my shopping online. Grocery shopping, Costco runs, and picking up prescriptions have all been added to Jason’s list. The only places the kids and I go are to doctor appointments.

The hardest part of all of this is seeing Paige miss out on so much in her developmental years. She hasn’t seen many of her friends in months... so long, many are forgotten. She's can't even tell us what color hair they have, any more. She doesn’t get to go to the park, the zoo, or AWANA. She doesn’t go to the grocery store. A fun outing for her is CHCC for one of Eli’s doctor appointments. How fun can that possibly be for a 3 year old? We so badly want to enroll her into gymnastics, but can’t. She should be in pre-school, but can't. She should be freely playing with her friends. Instead she can’t, “in case they have germs.” And she knows it. Paige has a great imagination and loves to play with her brother. She watches over him like the wonderful big sister that she is. She is an amazing kid, and we are so very thankful that she has an easy going, curious, fun, loving character. It certainly makes dealing with our situation so much easier.

I know many have wondered why we've taken such extreme measures. "Why can’t you come to church?" "Why can’t Paige play with her friends if they have been healthy?" "Why can’t the grandparents come see their grandkids? It’s only a short while." Trust me, we’ve heard them all. We’ve often asked ourselves the same question. But we always come back to the same realization. What if? What if a visitor has a cold or flu virus that isn’t infecting him/her, but infects Eli? Just because you're not sick, doesn't mean you're not a carrier.What if Tanya gets sick with a simple cold? Who will care for the kids? Jason has to work. Due to babysitting limitations, Paige actually had to stay with a friend once, and only once. She got sick, and was quarantined with grandparents and friends without kids for two weeks! What if Eli were to get sick a few weeks before his next cath lab? Will that make him fail yet again, meaning there is NO chance at surgery? As parents we have to weigh all of these options. Every single time we're asked if someone can come visit, or if Paige can go to a party, or we are offered dinner, we consider all our options. The only answer has always been the same answer. We cannot compromise. We have to live our lives with no regrets for Eli’s care. I don’t want to fail the next cath lab having a “what if” in the back of my mind. I have to give Eli the BEST CHANCE POSSIBLE to be a candidate for his next surgery.

If you are one of those people who may have been offended in the process of us living with no regrets, please look at our situation from our point of view. If you think you understand, multiply that burden by 100. It has not been easy for us. But so far, we have no regrets for what we have done. And we will continue to live this way, until we feel it’s no longer necessary.

Making Daddy Proud

2010-04-19T07:50:00.001-07:00

A few weeks ago I (Tanya) was listening to Blue Man Group while tidying up the house. Last week after dinner, Paige asked to dance to the "boom boom" music. I had to think what she might be talking about, and figured she must be referring to Blue Man. I found our DVD of their concert and played it so she could see the characters, but also the fun instruments they play. All four of us were rocking out to a very loud in-home concert of Blue Man Group. Paige started dancing around, eventually leading to head banging. Eli laid on the floor watching intently, and often laughing at his silly sister. Both of the kids enjoy listening and moving to rhythmic music, following Daddy's drumming and rocker footsteps.

Huge progress

2010-03-27T10:12:00.000-07:00

Eli is proving to be a Wedehase child, following in Paige's footsteps. When they decide they want to do something, they do it 110%. Ever since Eli's pacer was installed, we've noticed a huge improvement in his energy levels, which has helped in his development. He is getting stronger, almost enough to sit up on his own. He is balancing and correcting himself, reaching for toys, and pulling himself up from leaning back against something. He'll be up on his own in no time.
His verbal communication is getting so much better too. He was so quiet and stoic for so long, we were getting concerned of possible cognitive delays because he just wasn't picking it up. Lately, he's been babbling a ton more. He says ba-ba, and just yesterday began saying da-da-da very clearly. It's very much music to our ears. He is also showing us that he understands what we are saying. If we ask him a question, he'll often shake his head no as a response. Often we do it to be silly, but he seems to be getting it.
Eli is also showing more interest in foods. He sits with us in his highchair while we eat our meals, and he is constantly watching us eat, and even smacking his lips. Most of his feeds are still through the g-tube, but he is getting one chance at the bottle a day. Lately he has also been getting one serving of beginning foods. We started with rice cereal, then sweet potatoes. We'll eventually add in bananas and other foods to vary his diet. He takes in 10 or so bites before he's had enough, then the rest goes into his g-tube. The biggest thing for Eli is that he doesn't get a food aversion, so we are encouraged he is taking anything by mouth.

Eli saw his cardiologist this week. It's the first office visit since his pacer was installed. Dr. Heragu was pleased with his growth and development. He didn't make any changes to his medications or diet, since everything is working well as is. We also discussed when to do the next Cath Lab. Eli's allergies have been making him slightly congested in the nose, so Dr. Heragu was hesitant to test him with even the slightest congestion. Eli just started taking Claritin again, so we are hoping it'll clear up his nose. Since we are looking at his lung pressures, any little thing can affect the numbers. Dr. Heragu wants to see us again in 6 weeks, and we'll probably set up a Cath Lab sometime after that.

We are giddy little parents here. These big strides are so encouraging for us.

After His Bath

2010-03-13T20:23:00.000-08:00

Here's one for the grandparents. Eli after his bath, au naturale. No wires, no tubes. Just one cute, happy, little growing boy!

March videos

2010-03-12T20:46:00.000-08:00

Here are a couple videos from this week, at home. Eli loves to laugh, and Paige loves mommy.

Spring is in the air

2010-03-01T15:53:00.000-08:00

It's March, already! The whole family spent the weekend outdoors getting ready for everything to come back from its winter sleep. Pulling weeds, trimming trees, mowing the lawn, fertilizing everything, and even starting the vegetable garden because Lowe's already had stuff in stock. It might be a little early, but we're so anxious for spring, we planted them anyway. Tomatoes and artichokes, so far. There's still room for zucchini and one more vegetable, unless we don't do the giant pumpkins this year... then we'll have lots of space!

We almost forgot to bring out the camera, so there aren't a lot of pictures. But here's our Super #1 Helper, Paige, helping to clean up the weeds. She loves to help!

Birthdays and Behavioral Changes

2010-02-19T21:19:00.000-08:00

Congratulations, Eli, on your first birthday! We celebrated quietly at home, opening gifts from friends and family. We later caught up with some of the grandparents in our usual fashion, our dearly appreciated Skype and a webcam.

We're noticing drastic changes in Eli's demeanor and activity. Certainly, this is related to his pacer and improved cardiac output, but we think it might also be due the reduction of one of his medicines, Reglan (metaclopramide). This drug is used to speed the processing of his feeds, allowing us to push as many nutrients through him as possible. It's also a bit of a controversial drug, in that some of the potential side effects can be pretty intense. Many of these side effects are based around confusion, a mental "fog," and a depressed mood. Unfortunately, we've just had to surrender to those possibilities because getting more food into him has been so important, to maximize his physical growth and strength. Without the Reglan, it was very common for Eli to retch many times per day. This would turn into a choking event, and we'd watch his heart rate plummet as it starved for oxygen. Several times per day, it really was as terrible as it sounds.

Lately, we've been able to both increase his feeds and, at the same time, decrease his Reglan. He's now getting 60% of the Reglan he was getting, and we're working our way toward total elimination, if we can. We haven't seen Eli retch in a couple weeks, and only a couple times since his pacer implantation. We've asked Dr. MacDonald if there could be any correlation. He explained they were theoretically possible, but far-fetched at best. Whatever the case, Eli is clearly more alert and active lately.

He's also much more mobile than ever before. He's figured out how to roll himself around and find himself on the other side of the room. We've had to add an extension hose to his oxygen feed, to allow him a longer "leash." He's moving across the floor to grab for toys or satisfy curiosities. He's learning how to get himself into trouble... and we LOVE it!

Here are a few photos from him first birthday.

Home again, with a catch

2010-02-03T18:02:00.000-08:00

We made it back home today. Eli has slept terribly at the hospital, never more than 15 minutes at a time. When we started heading home, he was sacked out in the car in very short order. We brought him, fed him, and he slept for 3 hours. There's just nothing like your own bed, huh?

Paige has spent the last few days staying at a few different friends' houses. Today, she picked up a low grade fever. She's feeling fine, and just like we thought, it hasn't slowed her down at all... but it means she can't be near Eli for a while. She'll be staying with Nanna & Nanno until Monday night. Maybe we'll get to be an entire family unit soon!

On a different note, Eli is a notoriously difficult "poke." It's extremely difficult to get IVs in him, partially because he's been stuck so many times in his life, it's hard to find a clean spot. We've actually reached the point where the phlebotomists aren't allows to poke him any more, they always call in a PICU nurse. One area they've never touched is his head, where the veins are HUGE, shallow, and plentiful. As one nurse stated "His head's like a gold mine!" The downside is they have to shave his hair to get to them. Poor little guy! :)

Here he is at home, tonight.

Checkpoints & Quitting Points

2010-01-30T22:06:00.000-08:00

We’d like to draw a bit of a mental picture for you, if we could. Tanya and I once hiked Half Dome. Along the way, there is a path called the Mist Trail, earning its name because it passes along the bottom of a waterfall, where heavy winds and mist are constantly bombarding you. Very careful and calculated footing is required here so you don’t fall. Unfortunately, this means your eyes are always on the ground, rather than looking around to enjoy the view. Immediately following is a climb, very much like giant stairs. Some steps are as high as your waist. It’s very tedious and strenuous, especially with a 45lb backpack. It’s not until you reach the top, a checkpoint of sorts, that you lift your eyes and look around and behind you. Looking back at those steps, you’re amazed at how much progress you’ve just made, and how many steps there actually were. It’s totally different than when you’re looking at them one-at-a-time. We “couldn’t see the forest for the trees” to use another analogy.

We’ve done the same thing, figuratively, with Eli. Very soon, Eli will be one year old. As this realization hit us, it was very much like achieving that checkpoint. We’ve started to look back at all the steps and trials we’ve just climbed. Wow, there were a lot! But, standing on every one of those steps are all our friends and family, who have helped us make it over each of those steps. You have all pulled us up each step and helped carry our packs much more than you realize. We’ve been through so much with him, it all starts to blur together, and some even forgotten. In the last week, I’ve gone through our entire blog, our journal, to re-gather up some of the memories that have fallen from our grasp. Just like with the Mist Trail, I find myself thinking “Wow, that’s a lot!” Talk about putting things in perspective.

So, let’s continue hiking, shall we?

Eli had his pacer installed a week ago, and we came home 4 days later. We’ve taken care of his medical needs at home; breathing treatments and pain relief medications. Yesterday, he was supposed to have a follow-up appointment with his surgeon, but he wouldn’t tolerate sitting up in his car seat. Dr. MacDonald rescheduled it for today. Once again, he wouldn’t tolerate sitting up. Dr. MacDonald insisted we find a way to get him up so he could see him, first hand, because this wasn’t normal.

On the trip up to the hospital, Tanya noticed fluid swelling around Eli’s pacer site. This is extremely bad news, and has the potential to be the worst possible news. If there’s an infection around his pacer, he will have to go back into surgery to have it removed, then kept in the hospital for multiple weeks to heal from both the infection and the surgery, then another surgery to have another one re-installed. This blog and our lives have been filled with so many medical explanations and procedures, it’s easy not to flinch at them any longer. But if you take a minute to pause to consider what’s really happening here… it’s so frustrating (such a simple word feels so incredibly inadequate). One minor infection may cause two additional open heart surgeries. The possibilities were enough to finally, FINALLY break Tanya and I down to nothing. We’ve heard so many “You’re so strongs,” but everyone has a break point, and we’ve now seen ours.

Today, I finally cried for the first time since Eli was born. In fact, the first time in many years. We had “that talk” with the doctors, at our prompting. I asked Dr. MacDonald when, in his experience, he has seen most parents finally ask if they’re doing the right thing by fighting so hard for their child’s life. At what point have we poked, pricked, cut and abused his body enough, and it’s time to say “That’s enough?” Is it time to admit we can’t win this battle? Is it time to take him home and let nature take its course?

….

I wish I could put into words what it feels like to reach this point.

….

The extremely abbreviated version of Dr. MacDonald’s reply was “That’s a parent’s decision, not mine. I will support any decision you make. However, I’ve seen a lot worse than this, and kids living relatively normal lives on the other side of the battles.” It was what we needed to hear from someone who sees hundreds of these situations, and completely understands every potential medical hurdle in front of us.

1 Corinthians 10:13 No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.

When we started this blog a year ago, it was partially because we couldn’t find one for ourselves, as we entered this journey. We wanted to know how it affected parents’ and siblings’ lives. We wanted to know about the non-medical parts of the journey, not just about the surgeries and charts. We never found it. We felt led to journal everything here, for families who travel this road behind us. A true look at the real life side of this road. We knew this would require significant transparency on our part, and that’s what this post is about. We began to prepare ourselves to choose to let Eli die.

__________________

The previous was written on Thursday. I’ve decided to keep in intact. Fast forward 3 days to today.

We sat around in waiting rooms for radiology and the lab as Eli’s mood continued to degrade. Insurance red tape is probably killing more people than we want to talk about, but it is not my intent to turn this blog into a political one. We went back to the cardiology clinic, and they admitted us straight into PICU. The X-rays, ultrasounds, blood draws and EKGs were all done within 30 minutes. His white blood count was not elevated, nor did he have an abnormal temperature. These both pointed away from infection, but we had to be absolutely certain. They aspirated the fluid out from the pacer area. It wasn’t puss, nor clear fluid. It was all blood. While that sounds a little shocking, it’s not nearly as bad as it sounds. In fact, we’re all VERY excited to see it wasn’t puss. Puss would mean he’d have that pacer taken out immediately. They called this a hematoma, possibly a broken vessel caused as the pacer settled in, but no concern was shown for specifics. They wrapped him up for a little pressure on the area, and called it “good.”

The blood went to the lab for tests. They found no “bugs.” Everything appears to be OK, but we’re waiting 5 days on bacteria tests, to be 100% certain. We desperately want these cultures to come back negative, because they could still mean pacer removal… but things are looking very positive, otherwise.

Eli remained a little irritable for a couple days, possibly due to a small rash around his feeding tube site, or possibly due to where ever that blood was coming from. Today, he finally made some huge strides. When Tanya walked into the room, he turned his head toward the door, saw her, and smiled as big as ever! She spent the morning playing with him, holding him, watching him smile and hearing him laugh again. In her words “We have our little boy back! I haven’t seen him this happy since before the pacer was installed.”

Please pray for no infection. Please thank God for continuing to use Eli for His glory.

Smiling

2010-01-24T11:26:00.000-08:00

Smiles today!

Pacemaker Recovery

2010-01-23T15:44:00.001-08:00

Last night, Eli was in the same medical state as the night of his surgery. He was still on sedatives, heavy diuretics, had significant edema (fluid swelling) and his canula was still feeding a full 6L/hr of air. As we left for the night, we began emotionally bracing for a very long stay, realizing an additional week or two might be realistic.

This morning, we decided to head home for the morning to spend time with Paige. It was a great morning of hugs, kisses and laughter. We've missed her so badly, and it was obvious she was missing us, too. She's been having lots of fun with grandmas, but it's been 5 days since we've seen her in person. We ate lunch together, read books together, and had lots of real-life contact with our favorite little girl. As we tucked her in for her nap, we explained we were heading back to the hospital and maybe we could talk to her "on the computer" (webcam/Skype). She started to cry a little, but we made it through. As I write this, we're waiting for her to wake up from her nap so we can show her Eli. Yesterday when we talked to her on the phone, her first question was "How is Eli doing?" She's an awesome big sister.

Now, we're sitting in Eli's room again. We're so excited to let you all know, he made huge strides today while we were gone! He's only had one sedative dose today, and they're trying to hold those back as much as possible. He's on all the same medications as home, now. He's on standard feeds, just like at home, and his air is all the way down to 2L/hour! High flow only goes down to 1L/hour, so he'll be back to "normal" shortly, if he stays on this schedule!

He was awake and alert when we got here. He grabbed at our faces and very obviously interested in us more than anything else. He's still a little groggy, but you could see hints of a smile when we played with him.

Here he is, within the last hour.

Pacemaker Installed

2010-01-21T19:02:00.000-08:00

Eli had his pacemaker installed yesterday. Surgery went very well! He's in the PICU recovering now, while we're at the Ronald McDonald House enduring a little down time during shift change.

What did yesterday look like for the non-patients? Well... we woke up at 4am, after staying up past midnight because we couldn't sleep. We made some of the strongest coffee we've ever made. We really love our new coffee maker! It's the thermal mug type, so there's no burner under the pot and the coffee never tastes burnt. It's just so much smoother. Anyway... then we hit the road with our little red head.

5:30- Arrive. Sign in.
5:45- Go through all the normal pre-op stuff: Weight, height, when did you feed last, etc.
6:15- Got our pre-op room. New nurse asked all the same questions.
6:45- Met with anesthesiologist, Dr. Greaves. Asked all the same questions again.
7:00- Met with surgeon, Dr. MacDonald. This is the same surgeon who did his first surgery. We admire/respect him immensely. He told us it would be 2 hours after entering the OR before he was needed because they'll be setting up arterial lines, IVs, etc. He was noticeably relaxed. He had just come in from his morning swim. 2 miles!
7:30- We prayed over our little boy, and they wheeled him out. He smiled at us.
7:31- We stayed in the room a while, cried and held each other. It was so much harder to let him go this time. For his first surgery, he was 40 hours old, and we'd never even held him. He's 11 months now, and we've laughed with him in our home.
7:45- Breakfast in the cafeteria. CHCC's cafeteria is really great, for a cafeteria.
8:00- Searching to find a comfortable place to "crash" for a few hours. The basement has a couple areas that are very light on traffic and very far away from the main entrance, where all the people with coughs/colds wait. Once we settle in, Tanya naps while I burn up the batteries on the laptop.
9:30- First phone call. All the lines are in, incision started. Everything's well.
10:00- Restless and laptop batteries are low. We stroll casually through the halls.
10:45- PICU waiting room is too crowded. NICU waiting room has no Internet access, but we watch the last half of "California's Gold" with Huell Howser. If you don't know who he is, you should! Unintentional stand-up comedy.
11:00- Settle into an admin corridor, directly above the main entrance. Maintenance staff is working on ladders above the ceiling. Fire alarm goes off. This happened during his last surgery, too. I feel like I'm at work again. Listening to their radios, we find out it came from the construction area. Again. I have a little empathy for them. :)
11:30- Second call. "We're all done! Meet us in recovery." Recovery? Does that mean they extubated?
12:00- Third call. "Sorry, he's fighting extubation a little, so he'll go straight to PICU instead." That's what we thought was supposed to happen the whole time.
12:15- Meet with Dr. MacDonald. Everything went well. No problems!
1:00- Finally get in to see our little boy. He looks so tired. Still sedated and intubated, but wiggling around, and keeps rubbing at the breathing tube.
1:30- We watch them extubate him. Pretty simple, but he's stuffed up. They hold a mask over his face for a few seconds until... he cries! Hooray!
3:00- They step him up from a regular canula to a high-flow canula. He has some upper airway swelling and could use a little assistance sucking that air in.
4:00- We leave to get food. We force ourselves to leave the campus and go to Macaroni Grill. Dr. MacDonald encourages us to do so. Honey balsamic chicken for me, chicken parmagiana for Tanya.
5:30- Check in to Ronald McDonald House. The (lack of) Hospitality Team is so incredibly inefficient. Rock music is playing over the speakers through the hall way. It's a little disheartening that it appears they've lost their focus as to why they're there. I know it's a work environment for them, but it's supposed to be a temporary landing pad for parents in crisis. A peaceful "safe" place. Oh well, we're all human. Just get me my key, we don't need the tour, again.
5:45- Walk back over to sit with Eli.
7:00- Shift change. We have to leave for an hour. Just then, a friend calls to offer company. He meets us in the cafeteria and we drink hot chocolates and enjoy friendship.
8:00- Back to Eli's room. We're beginning to be able to calm him now. I rub my fingers over his eye brows to keep him resting. He had become agitated while we were out. All his kicking nearly pulled out his arterial line (his only IV, and also used to constantly read blood pressure). A little mommy-sedatives helped to keep the medical sedatives to a minimum.
10:00- Getting ready to head to bed. It's been a long day. Just as we do so, Eli quickly turns WAY blue. His oxygen saturation monitor isn't working, either, so we don't know where he is. The nurse begins scrambling to figure out what's wrong. 2 more nurses come in and start figuring out what's wrong with the saturation probe. Respiratory therapist comes in and starts tweaking his air feed, blasting him with straight oxygen. He's pink again, but that was a scary 45 seconds, and they still don't know what's wrong with the probe. Electronics-tech-daddy sees the probe doesn't appear to be getting power and asks them to check where it's plugged into the main monitor. Tada!
10:15- Nerves settled back down... try to head out again. Eli is sleeping peacefully. Why the little event? We don't know.
11:00- I'm not sure what happened at 11. We never quite saw the clock reach that point.

Today, Eli continues to make progress. His swelling is already decreasing and his breathing troubles are beginning to ease. His cardiologist, Dr. Heragu, came in and verified Eli's pacer is doing what it should, and the vendor, Medtronic, trained us on the monitor we'll be taking home so we can download the information out of his pacer and send it to them via phone line. We'll do this once per month.

Here's Eli's latest. Last night, after surgery. He only has one IV, the red line coming up over his belly. The rest are EKG stickies and his pacifier tether.

Pacemaker Rescheduled

2010-01-12T21:33:00.000-08:00

We have received a one-week delay for Eli's pacemaker installation. Red tape is awesome. Apparently, our insurance doesn't think our surgeon is on their approved list, and the red tape involved may not be complete by tomorrow's intended surgery, so in our surgeon's words "Today, or a week from today won't make a hill of beans of a difference for Eli. Let's just wait until next week, rather than overload you with all sorts of medical bills so you can fight insurance to prove they need to pay them, anyway."

So... next week. Same schedule. Tuesday pre-op labs, Wednesday surgery.

Pacemaker Implantation

2010-01-11T16:32:00.001-08:00

Eli was on a 24-hour heart monitor recently. It verified what was already assumed: his heart's electrical system isn't functioning properly. His heart's chambers are out of sync with each other, making his already compromised heart much less efficient than it should be. In addition, his heart rate is always much lower than it should be, dangerously low at night. Typically, kids at his age should have a heart rate averaging 120-160 bpm, but he averages about 80 bpm and only reached 110bpm when extremely angry. In very heavy sleep, his heart rate will even fall into the mid 50 beats per minute area.

Wednesday, Eli is having a pacemaker installed. This is a permanent alteration, and will be with him the rest of his life. It will help synchronize his heart's chambers and bring his heart rate to a safer level.

We're expecting a 2-night stay at Children's Hospital, and hopefully back home by the end of the week, should everything go well. We'll share more details as we know them. Please continue to pray as faithfully as you always have.

Christmas Photos

2009-12-26T19:54:00.000-08:00

This Christmas was obviously a quiet one at home for us. With our need to keep Eli safe, it really limits our options. A couple weeks ago, we were able to see Christmas Tree Lane, since it didn't require us leaving the car. We have also had tremendous support from two of our dearest friends, who have taken our precautionary practices upon themselves, so they are able to be at least one piece of "social" for us. There's simply no way we could communicate how humbling and great this is for us, nor offer enough thanks.

Here are some glimpses into our Christmas this year, Eli's first. He continues to be such a happy, smiley boy, and continues to bring us so much joy. With Paige now three years old, we've begun to forge our own holiday traditions. Paige helped make candies. Below, she dips pretzel sticks in caramel before also dipping them in chocolate then crushed almonds. Yummm!!! Randy and Laurie brought Paige a few games for Christmas. Paige really looks forward to seeing them, and they're so great at having the time and patience to enter her world and play with her. Here, Paige is beating Randy at a game of Ants in the Pants.

Also below, Paige now helps decorate the tree. And, Santa brought her the blue fork and spoon she asked for. Eli is all smiles, as usual, and completely captivated by the blue light on his first Christmas present.

10 months!

2009-12-18T17:25:00.001-08:00

Wow! Eli is 10 months old, now. Saturday, the 19th, he'll have been home from the hospital 6 months, and the following day is 10 months from his first heart surgery. To us it seems like eternities ago. This year has been a big haze and fog to us. Yet at the same time, it all seems like yesterday.

Since coming home, Eli has made great strides developmentally. When he came home, he was 9 pounds and could barely hold up his head. He was essentially a newborn in a 4 month old body. In fact, one of the therapists who works with Eli doesn't "count" the months he was in the hospital when she evaluates him developmentally. She sees Eli as a 6 month old, not 10 months.

Eli is growing stronger by the day. His head control is strong. He'll sit supported for short periods, sometimes pulling away from the back support and balancing himself. Just recently he started bearing a little weight on his legs. Eli likes to grab for things next to him while laying on his back. He has the ability to roll over, just chooses not to. He not fond of tummy time. Mommy was very relieved when he figured out how to put his pacifier in his mouth on his own, especially in the middle of the night.

Eating presents a different challenge. He is mostly fed through his g-tube. We give him the opportunity to drink from a bottle at least once a day, but often he'll only drink an ounce or two before he tires out. Our surgeon gave us a great analogy that helps us understand Eli's feeding. Eli's body is working so hard to maintain his heart, it's like he is constantly running a marathon. When you add in feeding, it's like eating a large meal while running that marathon. It's just too much. For that reason, we don't push him too hard. Eli has been able to explore with a few solid foods. His been given rice cereal, sweet potatoes, plums, and bananas. He'll take a few bites from the spoon, play with it, and eventually swallow it. It's certainly a foreign thing to him. He's not sure what to do with it.

One thing Eli has never lacked in is his socialiblity. When he was in the hospital, he got tons of attention from the nurses, therapists, doctors, and volunteers. He loves to be talked to, and will smile at any movement or sound. He has earned the name Captain Smiles, and wears it well. He adores his sister, Paige. She loves entertaining him and making him happy when he is upset. She is the only one who can do silly things and make Eli truly laugh. They share a great bond.

Eli is fairing well so far this winter season. Becoming shut-ins has not been easy on us, but it is proving to be protecting Eli, so that makes it all worth it. Please continue to pray. Eli is running a race against time. We pray daily for the miracle Eli needs to have to be a candidate for his next surgery.

Modeling with Paige

2009-11-29T14:41:00.001-08:00

Montana de Oro, just before sundown.

After a 1/2 mile hike down to the oceanic cliffs of Montana de Oro for some family photos, Paige first warmed up the camera on one of the grassy hills. I'm just an amazingly proud daddy, that's all. I love this little girl!

November Photos

2009-11-21T15:11:00.000-08:00

Being an unusually warm day, and probably the last of the year, we decided to make the trek to Woodward Park a couple weeks ago for their annual cultural event in the Japanese Gardens. Fall colors were in full splendor and very few people were present. Afterward, we had a picnic lunch and Paige and daddy climbed over the rocks near the stream, and went "sploring" to find new stuff. Paige loves exploring.

Also, this week was Eli's 9 month anniversary. We figured he was due for another photo session. Eli's pictures were taken this afternoon.

Halloween 2009

2009-11-02T20:44:00.001-08:00

We had a very quiet Halloween at home this year. Paige got to wear her Cinderella dress, complete with tiara and wand. She got her hair curled and even wore some of Mommy's makeup. To complete the theme, Eli was Gus the mouse. Here are a few pics of them all dressed up.

Jason acquired a green thumb and grew some giant pumpkins in the backyard. In his first year, he harvested a 68 pounder and a 70 pounder! It'll be interesting to see what he will grow next year, with all the things he learned from his rookie year. He also had fun carving the pumpkins. His are his works of art:

How can we help?

2009-10-23T18:11:00.001-07:00

Over the last few months, you’ve all been so very supportive. It would be impossible to count up all the offers for help you’ve given. And you all know how poorly we’ve been able to receive help. The problem is that we usually just don’t know what would help us. Or, more recently, our needs for quarantine have isolated us from being able to receive help. This week, we’ve discovered an area where we could use your help.

The further we make our way through this journey, we become more drained and lose sight of any goal. It feels a bit like a fog of war. We can’t see what’s ahead of us, and we’re forgetting why we’re out here. We are only able to put our heads down and continue marching., watching only our feet as they put down one step at a time. We trust, with all our heart, that God has a master plan at work. We also feel that’s such an abused cliché, often used to blanket all sorts of confusions, but it’s something we’ve latched onto for a year now. It’s been a year since we learned about what was to come with Eli.

We’d like to call on you to help remind us of the victories that have come through Eli’s story. Victories on any level from causing a smile or tear, to changing a life, to anything in between. Quick thoughts to full stories, we need them all. We still remember some of them. Stories of faiths renewed, stories of parents re-evaluating how they’ve taken their own children for granted, stories of families and children praying together for Eli. All these sorts of things give us strength to continue fighting.

In the Bible, there is a story about Moses, and his role in the battle of the Amalekites (Exodus 17). His job was to hold up his hands. When his hands were up, the Isrealites would be victorious. As he lowered them, they’d suffer loss. When he could no longer lift them, Aaron and Hur came along side him and held his hands up for him. We need your help holding up our hands.

We know there are many more following this blog than have ever written. We know there are some of you we’ve never met, who are following us faithfully. It would mean so much to us for you to communicate any encouragement to us. We’ve tried to share our lives as best we can, could you share yours? We’d love for you to share your stories here, so others can also be encouraged, but we recognize there are many reasons you may prefer not to do this. Lots of us don’t like speaking publicly. Many of us don’t want to spend the time to deal with the technology issues related to posting here. For whatever reason, we offer the alternative of emailing us directly at twedehase@yahoo.com

Thank you for continuing to walk with us. We eagerly await for your stories, and appreciate you taking them time to write them.

Fall Pictures

2009-10-15T20:24:00.000-07:00

Eli likes both sweet potatoes and grandma Ruth. Paige is both an artist and a super hero. We just thought we'd share some of our autumn, so far.

Cath Lab 2 Report

2009-10-13T17:00:00.001-07:00

Yesterday was Eli's second chance to see if he is eligible for the next phase of his surgery journey, the Glenn. We need blood pressure in the lungs to be low enough before we can proceed. He failed this test in July, so we gave him some time to grow into his anatomy, then tried it again.

Eli's lungs are still not sufficient. He still has pulmonary hypertension, the blood pressure in the lungs is too high. We need the blood pressure in the lungs to be 1/3rd (33%) of what it is in the rest of the body. At the first test, it was roughly 58%, but measurements were hard to obtain because his numbers were so erratic at that time. For yesterday's test, everything was much more stable, but pulmonary pressure was still in the 44% area. The positive side is that he's made signifcant progress, cutting the gap in half. He is, indeed, growing into his anatomy.

This test also verified, with certainty, what we have for months thought to be the case. During his first surgery, the band around Eli's pulmonary artery was not installed tightly enough. This band is used to reduce bloodflow from the heart into the lungs. It obviously has direct influence over the blood pressure in his lungs. It is adjusted by watching blood oxygen levels as it is tightened. Hind sight tells us that Eli's blood flow and direction is so chaotic, the numbers they used to adjust the band were not accurate. Technically, they could tighten the band, but this would require surgery, opening him all the way up to tighten the band. The alternative is to wait, and let him grow. The band will stay the same size, and he will grow larger, making the band relatively smaller. This is obviously a MUCH less invasive path, and the obvious choice.

So what now? Now, we wait and grow some more. We'll test again in a few months, but any specific timeline has not been established. Our cardiology appointments have been reduced to every 2 or 3 months, rather than monthly. Eli doesn't have any pressing issues at this time, so there's no need for such close monitoring. Our job is to keep him healthy, because any cold/flu would still be extremely bad for his sensitive lungs. We will continue to stay shut-ins through this nasty winter. Christmas and the holidays will be quiet and a little lonely for us this year. We look forward to a return to social life sometime next year.

So to the positive notes. The procedure itself went very well. We didn't even need to stay the night! Eli was... sit down before this hits you... AHEAD of schedule! They let him go home with us after a few hours in the recovery unit. This was such a huge relief because it meant that not only could we sleep in our own beds, but Eli would not be cared for by a nurse who was also caring for 3-6 other sick patients.

In addition, he was also sent home with a slight fever, which they don't normally do. While the fever is now gone, it was very encouraging to be told that he was being sent home with us because we've cared for him so well and understand everything better than other parents. The doctor made it clear to us that he trusted us with Eli's sensitive care, which is why we were sent home before we should have been. Earlier that day, his anesthsiologist asked us some specific detailed questions about Eli, which Tanya was able to answer. As he walked away, we heard him tell the other team members, "It sure is nice to work with parents who just know." Later, in recovery, we heard the charge nurse say "Just ask the parents. They're experts with Eli."

Am I bragging? Yes. I have an awesome wife, and Eli has an extraordinary advocate. Tanya's never second best at anything she wants to do, and Eli's care is a perfect example. I am extremely proud of her, and glad to have her as my partner through this journey.

Please pray for continued health for us all, especially Eli. Pray for protection from what has already been identified as a terrible flu season. And pray for Eli to grow, grow, grow! We continue to be humbled by everyone's outpouring of support, and could never thank you enough.

Cath Lab, Take 2

2009-10-01T21:14:00.000-07:00

In July, Eli failed his heart cath. Blood pressure was too high in his lungs. The plan of action was to give Eli a chance to "grow out of it." We were told to expect 3-6 months after the failed cath lab before we tested again. 2 weeks ago, his cardiologist used an echocardiogram (advanced ultrasound) to get a rough idea of how his lungs might be progressing, in regard to the high blood pressure. While not nearly as accurate as a full cath lab excursion, the echo still offers decent insight. After the echo, our cardiologist informed us Eli's numbers were indeed moving in the right direction.

Our cardiologist is the ultimate pessimist. He has a habit of immediately jumping to ultimate terrible possibilities, and doesn't seem to be able to acknowledge the optimistic. As an example, we once told him that we were running a HEPA filter 24/7, and he replied by offering that even HEPA filters aren't proven to be anything more than marketing. I wanted to suggest that if he would lick the dirty filter we brought to the next visit, I'd believe him. But, I held my smart mouth. When Eli had issues with unstable body temperatures, he immediately jumped to possible spinal tap testing, while every other medical professional showed little concern. When he saw the amount of diuretic Eli was receiving, he warned us it could cause deafness. As we spoke with other medical professionals, we were told this is true, given in ultra high doses via IV, but we should have no worries with his dose, and taken orally.

Now, we don't intend to villify our cardiologist. We just had to help define the lenses through which he looks. So, when he came to us today after studying Eli's echo more closely, we recognized for him to define his numbers as "encouraging" to be an extremely positive thing. So... what now? He wants to do another cath lab in less than 2 weeks.

Wait. What?! Like... 2 weeks?! Not February, but October? As our heads spun and we were caught by the headlights. We were made aware of just how unprepared we are for this.

There are a couple additional factors to this decision. Primarily, we'd also like to stay in front of any chest cold or flu. Since either of these could ultimately create a very short end to Eli's life, our cardiologist feels Eli's echo numbers look good enough to test now, and dodge handling the viruses floating around this winter in his current state. We get the impression it's a little "seat of your pants" and the window of opportunity may be narrow, so it all helps define testing now as a risk worth taking.

Should Eli's lungs again show to be insufficient, we understand our cardiologist's next step to be compassionate care. We take Eli home, and make him comfortable for as long as we have him. We trust that clearly defines the importance of passing this test... in two weeks.

We are obviously heavily distressed. We have one last chance at a live-or-die test in two weeks. We feel so inadequate when we realize it takes something this severe to bring us to our knees in prayer, but that's the reality. It's easy enough to continue to pray, but we become comfortable and complacent with our circumstances and forget to plead to God, with everything we have, for Eli's health and continued life.

That's where we are now. Can you please receive the full severity of Eli's condition, and every time you remember, join us in begging God for Eli to be able to grow into a little boy, an adolescent, a young man and into full maturity as his life continues to glorify God for many years?

Matthew 7:7,8. ⁷"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. ⁸For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened.

John 14:13. ^13"And I will do whatever you ask in my name, so that the Son may bring glory to the Father."

Matthew 21:22. ²²"If you believe, you will receive whatever you ask for in prayer."

Jeremiah 29:11-13. ¹¹ For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. ¹² In those days when you pray, I will listen. ¹³ If you look for me wholeheartedly, you will find me.

Since before Eli was born, we've prayed for a miracle the doctors couldn't explain. This remains our prayer.

Defining Boundaries

2009-09-13T12:56:00.000-07:00

Last week, we made a post about how fragile Eli's health is. We noted concerns about coming across bluntly. Today, we were reminded that while you all say "Oh, I understand," the reality is that you don't. Please stop telling us you do. Please let me explain how grim the situation is, and please do your best to understand it. Eli's outward appearance is no indicator of his health. He looks great, yet he's always one step away from the ICU. We can no longer afford to have any concern for peoples' feelings being hurt by our strict measures.

If you think you might be sick, stay away.

If you have "just a tickle" in your throat, you are a lethal threat to Eli. Stay away.

If it's "Just a little nothing," stay away.

If you passed a friend in the grocery store who has a slight cough, stay away.

If you've been around someone who's been sick, you're a carrier. Stay away.

If you've been around someone who's been around someone else who was sick... stay away.

This week, we had to ask Eli's physical therapist not to come in the house because she thought she may have been around a sick kid last week. She said she felt fine, but also admitted that doesn't mean she may not still be contaminated. She now doesn't enter the house without rubber gloves and a surgical mask over her mouth.

This is a serious message, and we need you to understand and respect it. We are entering into flu season. The flu will kill Eli. Today was Eli's last church trip for a very long time, and we only did it because it was outside in the park. Paige cannot be a part of AWANA. Paige cannot take part in play dates with friends. Paige cannot go to preschool. We can't sign Paige up for gymnastics, no matter how much we'd like to. We were forced to miss a birthday party for a dear friend yesterday, because we just can't take any risks. We have been forced to isolate even our very selves, so that we don't become carriers. When Paige got sick, we didn't see her for a week, as she couldn't be home. One evening, I put serious consideration into getting hotel room here in town, because I was concerned about being a carrier, as well. My mom flew into town from the Seattle area over a week ago, but hasn't seen Eli yet, for fear of contamination. We demand this level of care and concern.

Every day when we come home from work, our first step is to use the hand sanitizer at the front door. Then, proceed DIRECTLY to the shower without touching anything, shower with antibacterial soap, then change into new clean clothes. We have a HEPA filter running 24/7.

We are now in lock down. We will be shut-ins through the fall and winter. I will say it once again, Eli is always one step away from the ICU. He will be seen only when necessary. We CANNOT have another close call like we did a couple weeks ago. His mortality cannot afford it.

We pray the severity of the situation translates well. Yes, it is intended to scare you. That's the same edge we live on every day. Eli's cardiologist has all but verbally admitted he doesn't expect Eli to make it through this season, but he's hinted at it very strongly.

Please pray we make it through this winter.

Little Sister Sarah: Goodbye & Thank You

2009-09-12T13:36:00.000-07:00

A week ago, my little sister passed away in her sleep. Sarah was 30 years old. The last week has obviously come with much reflection.

Growing up, Sarah and I had our typical brother/sister quarrels. That's what kids do. But we also had lots of fun together. When we were probably aged 6 and 3, we used to play a game called "truck." She'd sit on the couch with her legs straight out, and I'd grab her feet and pull as hard as I could to get her off the couch. She’d land straight down on her rear, and I’d proven my strength. She was never able to pull me off the couch. I remember her betting me I couldn’t hit her finger with my drumstick. I quickly won that bet, and we never did that again. I remember our parents having to put a piece of tape in the center of the backseat of the car to mark a barrier neither sibling could cross, as we traveled cross-country for 2 weeks. To this day, I still say she crossed to my side on occasion.

We both grew up musicians, thankful years later for the piano lessons forced upon us both. She was always a better pianist than I. She went on to play violin, flute and saxophone, but her real love eventually became the bass guitar. I remember sitting in as drummer for her band, as she and friends rehearsed a live rendition of “Spider Webs” by No Doubt for the high school talent show. I still remember countless hours of listening to her playing her bass in her room to all of her favorite heavy metal bands. She had a particular (and understandable, I might add) love for Metallica. We both “cut our teeth,” so to speak, on Metallica’s music. We even played together, at times.

We both saw our first live concerts together. Van Halen and Def Leppard, two different shows. We also saw Collective Soul and a few other shows together. We were both equally floored to learn we were related to “Head,” the guitarist for Korn. Meeting him at his parents’ house was like meeting a childhood hero for her. She’d later go on to see Korn several more times, once getting VIP passes that she bragged about for weeks.

When Tanya and I married, Sarah was so excited to have a sister. She loved Tanya as though she’d been a sister since birth. It wasn’t until this week that I would recognize this as probably her greatest strength, accepting others. More on that, later.

When Sarah became a part of the professional world, she shined yet again. In her short time as a writer for the Reedley Exponent newspaper, she showed her award-winning writing skills to be as abundant as her musical ability. She was very proud of this, having saved several of her pieces as personal keepsakes.

In more recent years, our siblinghood matured into a spiritual relationship. Sarah began to see the new peace, joy and life I had through faith in Jesus. I will always distinctly remember her asking me “If God chooses who to make happy, why hasn’t he chosen me to be happy like you and Tanya?” That was a tough question, but became the opening of the door to her very own salvation, which came a little later. We were so excited to give Sarah her own Bible for Christmas in 2004. Only a few years later did the evidence of those planted seeds maturing come into view. In the last couple of years, Sarah was more outspoken about her faith, and specifically in a Savior Jesus. When she moved back to our area, she began attending church regularly with us. Paige enjoyed being able to wake Sarah every Sunday morning by jumping on top of her, putting her face 6 inches in front of Sarah’s, and asking very loudly, “Auntie Sarah! Are you awake?!” The answer was almost always “Well, I am now,” with a big smile.

Auntie Sarah was very vocal about her love for Paige and Eli. Eli played a huge part in Sarah overcoming her anxiety. While he was still in the hospital, Sarah built up the mental toughness to break so many barriers that had recently burdened her. 1. She drove on the freeway. 2. She did it at night. 3. She allowed herself to be a passenger in a car. 4. She rode in an elevator to an upper level in the hospital. She often shared the story about when Paige asked “Daddy, why are we going so slow?” because I actually maintained the speed limit, bringing Sarah up to the hospital to see Eli. Sarah immediately burst into laughter at the well-received distraction, as she tried with all her might to hold back tears of anxiety. The corridor to Eli’s section of the hospital was very long, and was solid windows on one side. As Sarah ran her hand along the wall on the opposite side of the corridor, she asked “Why do these corridors have to be so long?”

I will always remember her saying with such strong conviction “I will NOT allow my anxiety to keep me away from my precious nephew. I’m GOING to see him.”

This became an obvious turning point in Sarah’s life. Only weeks later would she quit her Bakersfield job, and move back up to Fresno, to see family she hadn’t seen in 4 years. Her newly found joy in her victory from Bakersfield and all that time in her life represented was apparent to all. She moved in with our aunt and uncle, her bedroom on the second floor. Only days before she passed, she leaned over the loft railing, declaring to our aunt, “Look! It doesn’t bother me any more!.” She would share in social networking circles “I’d forgotten what joy felt like. I’m happier now than I’ve ever been.” Sarah was in a better place mentally and emotionally than she’d ever been in her life.

I’ll always remember having lunch with her only a few weeks ago, while she was still in Bakersfield. She told me “You know, I’m 30 years old, and I’m tired of living like this. I’m an adult now. It’s time for me to start moving forward. I don’t want to be this person any more. I want to be with family. I want to be with Eli and Paige.” She spoke of plans including going back to school to get her nursing degree.

Just as everything started looking up… she was gone.

Reading her friends share their own stories about Sarah, I’ve begun to have my own realizations. I’m disappointed that it took her death and seeing through other people’s eyes for me to examine Sarah’s life closely enough to recognize its real worth. If I were to single out just one piece of Sarah that I will always remember, it will be her acceptance and love. Sarah accepted anyone, just as they were. She was genuine, empathetic, loving and completely accepting. She would take people into her heart whose values completely differed from her own, and she would love them.

I have found myself wondering what sort of woman she would have been at 40, or 50, or 60 years old. I think she might have been a little eccentric, certainly joyful, and still armed with a wit as sharp as a tack. While I certainly miss her deeply, I take great comfort in knowing she knew Jesus before she died, and is already spending the rest of eternity with Him. I am also so greatly appreciative of what she has taught me, a true love for anyone, no matter their story. I am a better person because of her. All of us are.

Return to Morro Bay and Clean Air

2009-09-09T13:02:00.000-07:00

We had the opportunity for another long weekend in Morro Bay last weekend. While, surprisingly, not a very relaxing weekend for us, there were some high points and new discoveries with Eli's health.

We took the kids to the Santa Barbara Zoo and met up with my aunt Dani and cousin Bennett. Bennett is a genius 8-year-old who served as a great tour guide. Paige latched onto Dani, and they walked hand-in-hand all day. This was Eli's first trip to any zoo. It's just been too hot this summer to take him to Fresno's Chaffee Zoo, yet. Paige wanted to make sure we saw the "elphlants" first.

We also got to spend the weekend with our closest friends Randy and Laurie, who were in as desperate need of a getaway as we were. When we told Paige they were coming, she said "Oh! I'm not shy to Randy and Laurie and Randy's a punk kid." We don't know where the latter started, but it's been a fun joke for Paige for quite some time. Randy did a great job teaching Paige how to build sand castles on the beach. We all shared some of the best laughter any of us has had in a VERY LONG time. Tears rolling down your cheeks kind of laughter.

Eli responded very well to the clean air, more than ever before. For three days, he only required oxygen while sleeping. Even that was at a lower level than ever. Our last day out, we even worked up the courage to remove his canula altogether, and he traveled through Morro Bay, up and down Embarcadero Blvd and to the beach with a completely naked face all day. We've now been home two full days, and are still able to go without oxygen while he's awake. We don't know if this is a good sign, or any indication of his health, but it's certainly helping us see him as a real boy, not a medical patient. He's also getting much bigger very quickly. He's well past 13lbs, now.

We talked to Dr. Fields about the clean air and oxygen support. Could clean air alone make such a difference? We know we live in some of the dirtiest air in the nation, but could it make that much of a difference? Could this revelation open any doors to further understanding of his condition? Dr. Fields was also intrigued, and we're going to experiment in the area of allergies. We'd like to see if perhaps all the junk in the air is irritating Eli's lungs more than most, causing them to tense up. Could this also effect his pulmonary hypertension? Most certainly so, yes. We are starting Eli on a daily dose of Claritin, of all things, and we'll see what happens. The only real way to know if it's going to make a difference is to simply try it, and note his progress.

As I type this at home, I'm looking over to his monitor. He's off of air, and all his numbers are exactly where we'd like them to be. We pray we may have just discovered another piece of the puzzle.

A note about Facebook

2009-09-09T12:36:00.000-07:00

Here's just a quick note to those of you who don't have the problem addiction with Facebook like we do. Tanya and I spend a lot of time on Facebook, and many of the minor updates or quick niceties only get posted there because we forget to share them here, as well. We've decided to make an active effort to change that, so please be patient as we make the transition to dual posting. And to those of you also on Facebook, you should get used to reading everything twice.

Witnessing a Miracle

2009-09-01T21:25:00.000-07:00

We had quite the scare 2 nights ago. Eli's condition continued to worsen. His breathing looked like a severe asthma attack, gasping and choking for each breath, then coughing with each exhalation. Excruciating to watch, we called our pediatrician to verify taking Eli to the ER was the proper choice. He agreed. We expected a trip back into the ICU and intubation to control breathing. We began to pack some clothes, knowing we were staying the night.

Out of shear desperation, we decided it was time to pray. Literally fall to our hands and knees over Eli, and beg God to spare his life. As we prayed, Eli stopped wheezing, and started singing! When we opened our eyes, he was looking right at us with a huge smile, and breathing smoothly. We had to turn down his oxygen feed, because he was bumping off the high end of where we want his blood oxygen saturation to be! In a matter of seconds was a complete turnaround in his health.

We never left the house that night. As I began to process the experience, I became a little frustrated with myself. I wrote that night:

I wish my own maturity and discipline didn't require such drastic measures. For a second time, I recognize the need to be bold and vocal with my faith. This isn't comfortable for me. Praise be to Jesus, who has given me everything I have, and taken away what I don't need.

Very shortly after all this had happened, I got a phone call from Pastor Jim. He informed me there was a business meeting at the church that night, and at the exact minute we were praying, the 50+ members at the meeting decided to pray for Eli, as well! I was beginning to see the evidence of God's direct intervention that night. It took friends' realizations for me to completely open my eyes to the fact that we had just witnessed a real-life, Biblical-style, body healing miracle.

I later shared a realization with one of those friends, "I can't believe how blind we are to God's work. We read stories of miraculous instantaneous healing in the Bible, and wonder why God doesn't work that way any more." In our hearts, we know he does, but living strictly by faith can be so challenging at time. That night, we experienced it for ourselves, firsthand. Not someone else's inspiring, slightly unbelievable story, but our own.

-----

Fast forward back to today. Eli's in much better condition, now. He's still a little mucky down in there, and occasional coughs are productive. He's still getting loaded up with medicines pretty heavily. He gets nasal spray on occasion to relieve sinus pressure, and saline drops and suction to help remove the snot. We're using a nebulizer to give him budesonide (a steroid to help dry out the fluids) and Xopenex (a bronchial dilator), but have pulled back on the Xopenex, lately. All these drugs sure dry him out. We get a kick out of the video below, because you can see the effects of his dry mouth, he sucks on his lips. It makes us laugh.

Paige is staying with friends one more night. She'll come home tomorrow. It looks like she's over her cold, and her voice is coming back. We've missed her desperately, but are SO THANKFUL for those who have risked (and given up) their own health in order to protect Eli. Home life will be a little different for us now. Antibecterial soaps, wipes and sanitizing gel are now standard procedure. At work, I isolate myself from people as much as possible. I don't let anyone ride in my vehicle any more. We're hearing about so many friends who are getting sick, all over the nation. 'Tis the season, I guess. We've decided to hunker down, become shut-ins, and try to make it through this fall and winter as unscathed as possible. We'll write more on that, at another time.

For now, praise our Lord, Savior, Healer and Provider Jesus for giving us such a bold miracle in such simple terms that even we could see it. Here's Eli, tonight:

Giving the Doctor a Look-See

2009-08-30T09:41:00.001-07:00

Eli's cold continues to worsen. He's constantly coughing and wheezing. Each breath is so snotty it makes me want to blow my own nose. One of the benefits of our new pediatrician is having his cell number. We called him, and he offered to meet us at his office today.

I hate to beat a head horse, but the severity of the situation doesn't always seem to register. When we receive comments like "You can't live your life worrying about every little sniffle," or "At least it's just a head cold," it's very difficult to hear, and so extremely insensitive. A little sniffle or "just a head cold" is literally life threatening to Eli. He's that fragile, especially when it comes to pulmonary function. Please recognize what a dark road we're traveling right now. I'm sorry to be so direct and rude, but while nearly everyone has been great support, some tiny, well-intended dagger wounds have really begun to fester.

Please pray that he maintains his strength to fight this.
Please pray that this isn't doing further damage to his lungs, which have already failed one cath lab test.

As I type this, he continues his raspy cough. And smiles.

UPDATE: Our pediatrician gave us a bunch of respiratory drugs and a nebulizer. We also got a prescription for antibiotics. We're making every effort we can to stay in front of pneumonia. Eli's reacting well to the treatments, but there's definitely some junk built up inside those lungs already.

Singing Eli

2009-08-29T15:08:00.000-07:00

Eli is becoming very vocal and sings often. We've also noticed that he sings more when Paige is not around. Maybe it's because he can actually get a word in! This video was taken today. He is singing and smiling through his congestion and cough. What a happy boy!

Fighting a Head Cold

2009-08-28T22:08:00.000-07:00

Last week, I (Jason) picked up a small head cold. It was nothing notable, it never even slowed me down. I never really developed a runny nose, and never coughed more than about 4-5 times. A couple days ago, it became apparent Paige had picked it up, as well. Although it's also not slowing her down a step, she definitely has a runny nose, a small cough, and has what we call "her funny voice."

We've been making every effort we can to isolate Eli from all of this, but how can you in a 1300 sq/ft home? We tried sequestering her in her room with movies (Thank you Nanna for the portable DVD player). Then we asked for help from friends willing to take a mildly sick child into their home. Thank you so much to those who've already helped. This weekend, Paige is staying with Nanna for the whole weekend, and this is an incredible gift to us, and especially Eli.

I'm writing because Eli is starting to show signs of being effected by this cold. His cough is a little wet, and his breathing is a little... snotty. All of Eli's immediate health concerns are based around the capability of his lungs. If this cough makes it into his lungs, it is very realistic to expect he may make it back into the ICU.

Please pray for protection and healing for Eli, and especially his lungs.

As a side note, we've come to recognize how rarely the blog is updated any longer. We're going to make efforts to resolve that.

Morro Bay 2009

2009-08-10T21:32:00.000-07:00

This weekend, the four of us got the spend the weekend camping in Nanna and Nanno's trailer at El Chorro campground, just south of Morro Bay. A 3 day/2 night getaway was long overdue. We decided to make this entry a photo book. Family dinners, swings, 8:00am s'mores, downtown shopping, watching a sunset on the beach, and so much more.

This was the best weekend we've ever had with Eli. That boy loves the coast! He barely slept all weekend, and never fussed, either. Just like Paige, if there's something to see, he'll take it in. He smiled more than we've ever seen him smile. He required less oxygen support than he's ever needed. Often times, we even had to turn his air off.

Lights and Tunnels

2009-07-14T18:58:00.000-07:00

Eli had his cath lab procedure yesterday afternoon. We are happy to report that his recovery was quick and he is already home. The reason for the procedure was to measure blood pressure inside the heart and lungs, to know whether Eli’s lungs would be sufficient enough to make him eligible for the next heart surgery, the Glenn.

Here’s a little refresher course on his cardiac anatomy. Our hearts function in something like a figure-8 fashion (or 4-cycle engine). Blood flow is heart>lungs>heart>body. Eli’s left ventricle, which pumps to the body, is too small (hypoplastic left heart. Hypo= small, plastic= construction), so the solution is to step away from figure-8 and think more along the lines of a single lap through the body (or 2-cycle engine). Here’s a visual of our anatomy, and what his needs to be (click to enlarge).Hopefully, you can see that, for Eli, the heart pumps through the entire body, then the blood flows passively through the lungs and drains back into the heart. For this to work, the vascular system inside the lungs needs to be very open and free, otherwise the heart will not be able to push blood through the lungs after already making a trip through the entire body. Hence, the cath lab procedure: to test if the lungs are “free” enough, sufficient enough, for this to work.

With completely broken hearts of our own, we have learned that his lungs are not sufficient.

As things currently stand, Eli is not a candidate for the Glenn procedure. This leaves us with two options. One option is an entire heart/lung transplant. This would relocate our entire lives to Stanford, should a matching double-donor be found in time. Eli would be dependent on anti-rejection drugs, and be forced to live in a bubble (figuratively) the rest of his life. We believe it is extremely realistic to expect that to be a relatively short life, regardless. Tanya and I have already ruled this option out. The hardships it creates on each one of us, and the complete lack of a quality of life for Eli just makes this a path not worth traveling, in our eyes.

The second option is, for lack of better term, controversial. Eli would be started on a drug called Sildenafil to treat pulmonary arterial hypertension. That is, it would dilate the arteries in the lungs, allowing them to flow more freely. The debate comes in whether this is a long term solution, or not. The reality for us is that it’s the ONLY solution we might have.

Eli’s already been through the first stage heart surgery, which is intended as a hold-over until he’s stronger and ready for the second stage. Eli is tolerating his current cardiac status longer/better than most, so we have an unusually longer period of time before the Glenn is required. As we understand it, we will be able to use this time to try this drug for a while, and take another run at yesterday’s procedure a few weeks from now. Should conditions remain the same at that time, we will surrender to the path of compassionate care: taking him home and enjoying him while we have him.

So, now we are headed down a tunnel with only one door. We hope and pray, with the darkest outlook we’ve ever had, that the door will be open this next time, when we get there.

Plead/pray/beg God that our original prayer still holds worth: That Eli would show the doctors a miracle they couldn't explain.
Continue prayer that God is glorified through this journey.
Pray for the clarity and understanding for us. We believe this journey was orchestrated to change us, mature us... something. Since that doesn't seem to have happened, we don't understand what's God's doing. We trust Him completely, but can't believe the possibility this story is already coming to an end, yet.

Cath Lab Procedure

2009-07-13T01:01:00.001-07:00

First, we need to apologize. We've totally dropped the ball, and haven't let everyone know Eli has another procedure this morning (Monday). So here's an update begging for the continued prayer support you've all given so faithfully up to this point.

Today, Eli goes into the cath lab and they're going to send a probe up into his lungs to measure blood pressure and flow inside the lungs directly. This is a general anaesthesia procedure with intubation, and standard practice is to keep the patient overnight in the hospital, afterward. The doctors have already teased that, with Eli, it will probably be a couple days, given his history. And... they're not really joking. That's probably realistic. This test is to make sure Eli's lungs are even going to be capable of handling his stage 2 heart surgery, called the "Glenn." We're hoping and praying, with all that we have left in us, that his lungs will be OK. If not... his story turns very grim.

We've typically used the blog to mobilize prayer, but have totally dropped the ball, lately. Life's been such a tornado, as we adjust to Eli's needs at home: keeping track of his meds, sleeping, eating, transport, doctor's appointments (he's had 8 in the last 3 weeks), general attention, and so on, all while maintaining Paige's normal life, at the same time. As a side note, Paige has been an amazing big sister, helping whenever she can. She's so proud of having a little brother, she always introduces him to everyone wherever we go.

Please pray for his lungs to be sufficient, and his recovery to be speedy. Please also pray that he doesn't "catch" anything during his return visit to the hospital.

A New Pediatrician

2009-06-25T16:40:00.001-07:00

We went through a few pediatricians with Paige until we found one we liked. When Eli was born, we looked into getting him in-line, as well. Come to find out, Dr. Fraley is retiring. Bummer!

So the search was on again. There was another doctor at the same office who came with good recommendation from the cardiology team at CHCC. He was the kind of doctor who enjoyed a challenging child (perfect), and even had specialty training in cardiac conditions! It seemed like a perfect match. We met him Monday, but we just didn't click. We realized it was very possible he was caught a little off-guard by Eli and his mountains of paperwork and medical history. It sounded like he was expecting a standard "well visit, meet the patient" kind of visit. We decided we'd give him another chance. However, we started to hear repeated recommendations for another doctor, Don Fields of Yosemite Pediatrics. He was so well praised, we decided to give him a chance. This has turned out to be a great decision!

First impressions of Dr. Fields office were of a very welcoming, new building. Fresh, modern colors, rich woods and a very open, airy environment. Of course, ergonomics don't decide a doctor, but it was refreshing. The staff was genuine, nice, and helpful. As soon as they saw Eli, they brought us back into the "Baby Room," telling us they were expecting sick kids any minute, and that it would be a good idea to isolate Eli.

We transferred into a normal room. and Dr. Fields came in almost immediately, laptop in hand for his paperless office. He sat with us for quite some time, asking lots of questions about Eli's medical history, and creating many new questions we'd never before heard. He made observations no one else has made, as well. The most notable of these was in regards to Eli's temperature. For some time now, Eli's had low-grade fevers. He's been poked and prodded so many times to figure out what's wrong, but nothing ever comes back positive. Dr. Fields made some detailed explanations (I'll spare you) about how he thought it could be a problem with the temperature regulating portion of his brain! He told us "Anytime anyone sees abnormal temperatures, they immediately jump to the conclusion of a fever or infection. Why hasn't anyone does a CT scan of his brain, to see if he has any other physiological defects?" So he'll be scheduling that for us himself.

We mentioned who his doctors were at CHCC, so he said he'd head over there this evening and sit down with all of them and catch up! We asked if all of Eli's transport needs qualify us for a handicap placard, so he's sending all the paperwork into the DMV for us. We asked about a PG&E break for his medical needs, so he's sending in all the paperwork for us. He gives all his patients his personal cell and pager numbers. He has on-site X-ray.

Are we impressed? An emphatic "Yes!" to say the least. It seems too good to be true, so the cynic and skeptic in me are waiting for the other shoe to drop. Until then, we're more comfortable and excited than we've ever been about a pediatrician!

His Web site could use some attention, but here he is:
http://www.yosemitepediatrics.com

Returning Update: Not returning

2009-06-23T17:09:00.000-07:00

Whew, that was close! The surgeon who originally did Eli's fundoplication and G-tube went out of his way this afternoon, and visited us in the emergency room. He scanned through Eli's records, checked him out, and genuinely "took time out" for us.

Eli's problems appear to be irritation on the inside of his G-tube, where the "mushroom" balloon that keeps the tube place is rubbing the inner wall of his stomach. This isn't completely unexpected, but not very common, either. After X-rays, blood work, and dye traces, they've sent him back home. We'll be increasing the medicine that controls stomach acid, and adding a numbing agent to the area before each feed until that area settles down.

Dr. Allshouse is an amazing man. We're lucky to have someone of his caliber available to us.

Thank you all for all your immediate support.

Matthew 18:20- For where two or three come together in my name, there am I with them.

Returning

2009-06-23T13:14:00.001-07:00

Just a quick note, and request for support.

We've brought Eli back to CHCC because he's having problems feeding. Our own assessment is that stuff is going in, but not coming back out. It hurts him so bad to eat, we hasn't eaten since his 3am feeding. We hope it's not C-diff complications. Nothing's been verified yet, but we expect he will be re-admitted today.

The last 24 hours have been extremely difficult for Tanya and I. Neither of us has slept, Eli hasn't stopped screaming. He still mixes in some great big smiles, but they get cut short with abdominal pains. This is the toughest time we've had yet, with Eli and our own care. We're both running on adrenaline, alone. And we miss Paige, dearly.

Please pray for Eli's health.
Please pray for our sanity.
Please pray for Paige's stability.

Homecoming

2009-06-21T17:38:00.000-07:00

In one of the most momentous chapter changes of his life, Eli has made it home!

Only 2 weeks after we were told he wouldn't be headed home before his second surgery, this very event actually happened. Ironically, Paige's visit to the ER was while we were dealing with Eli's discharge, only a couple hallways down the way! We didn't expect him home before October, following recovery of his second surgery. Only 6 days ago, he was in the PICU. He's made it into the step-down unit on several occasions, only to get sick every time, and escalated back into the PICU. We've begged the doctors not to send him into the step-down unit, which is a floor filled with sick kids, but lacks the isolation and control of the PICU, but this just wasn't possible. Discharge directly out of the PICU just isn't something they do.

So we changed our tactics, and took an extremely aggressive, active role in his care. Praise to Tanya for being there many, many hours this last week to care for Eli, so the nurses didn't have/get to. Praise to her for managing anyone who walked through his door, and their santitation practices. Praise to her for convincing the doctors we could do everything they're doing, at home! So they sent us home with all his meds (down to 9 of them, 6 by the end of the month), some oxygen bottles, and a monitor.

He's been home since Friday evening, and everything's gone really well. Doctors orders are extremely limited/controlled visitation. He's still very fragile, and any sickness will send him back to the hospital. This morning, we took a big risk, trusting God would bless our intentions and keep him healthy. Today, there were baby dedications at church. Our church represents a couple hundred people who have been supporting us so dearly, and blessing us. We trusted God would honor our desire to bless them with a chance to finally meet the boy they've been praying for, and have seen only through photos shared here. The fact that today is also Father's Day only made it that much more poignant for me.

As we begin this new chapter, we need to clearly reiterate that we're going to have to limit visitation to a very small, select few. We hope this doesn't create animosity or offend anyone, but we need to limit him to as little exposure to potential hazards as possible.

Please pray that he continues to stay healthy, grows stronger, and continues to be used by God to bring glory to his name.

Let's All Go to the Hospital!

2009-06-19T21:32:00.000-07:00

We've often commented on how difficult it is to manage two children, when they can't be in the same place at the same time. Today, we found this inconvenience to be a fair trade off to having them both in the hospital. We'll take "healthy" any day. Paige got to visit the emergency room this morning!

She was sitting on her booster chair, at the kitchen table. She decided to push off of the table with her feet, and the chair fell backward. She bumps and cries, but it looks like she'll be alright. She's a bona-fide toddler with scraped and bruised knees to prove it. Then she starts vomiting, and she NEVER does this. In fact, this is the first time in her entire life. I immediately had concerns for head trauma. Her pupils dilated appropriately and she was still talking. She was just a little quiet and clingy. She ended up vomiting three times before the ER visit was over.

The docs assessed her, and weren't extremely worried. She walked without any problems, and all the other symptoms were absent, as well. They gave her a medicine to help control vomiting and a popsicle. By halfway through the popsicle, she was talking so much we had to quiet her down. She told all the nurses about how we were going to see Eli, and all about his condition.

That was this morning. We just put her to bed, and she's acting completely normal. The last time she sat at the dinner table, she made a comment about how she's not going to kick the table any more.

4 month update

2009-06-17T21:38:00.000-07:00

Eli will be 4 months old tomorrow! He was doing well, so they sent him back down from the PICU to the step-down unit. Once again, he immediately got sick while down there. He'll get through this, but it's just annoying that every time he heads down into the step-down unit, he gets sick, and sent back into the PICU. Every single time. 4 for 4.

Eli now has a C-diff infection. He was running a low grade fever, but that's already broken. His is mild, so please don't think the worst if you follow that link. The short version is that C-diff is a bacteria we all carry, but we have other bacteria in our bodies that help keep it in check. In cases like Eli's, he's been filled with so many antibiotics that his bacterial balances are a little off, and the c-diff was able to multiply beyond normal levels. What's this mean for him? He had a couple runny diapers, and possibly some stomach pain, but he's still on a light dose of sedative, so he's acting completely normal. But it sent him back up into the PICU.

He's also back on a nasal cannula for a very light dose of oxygen. His oxygen dose of 1/4 liter per hour shows how little this really is. It's just a little boost to his regular breathing, but he needs it.

Lately, his compliments have started to shift from how cute he is (we still get that daily), to what a great demeanor he has. One doctor told us that, typically, cardiac babies don't like to be held a lot, and are a little standoff-ish. Eli, on the other hand, is always immediately aware and captivated by anyone who walks in the room. He'll wake up, turn his head toward you, and watch everything you do. And he loves to be held. He falls asleep on us all the time now. Smiles are also commonplace. In fact... today, I was able to make him smile so big and so much, we even heard tiny sounds of laughter out of him!

His second surgery isn't nearly as pressing as previously thought, either. This surgery, the Glenn, is typically scheduled by the patient's health, as they begin to outgrow the first surgery. Eli's cardiopulmonary functions are still doing well, so the surgeon isn't chomping at the bit as hard as he used to. For now, we're in sort of a cruise control, waiting for Eli to grow stronger and healthier.

Please pray that:

Eli's lungs mature and function more efficiently.
He is protected from all the sicknesses that float around hospitals.
He can tolerate larger feeds, so he can put on even more weight.

This is how it's supposed to be

2009-06-07T22:24:00.000-07:00

Yesterday, we finally got permission to unplug Eli from his monitors when we're holding him. For the first time ever, we're able to hold him freely. No more organizing and bundling up wires, and making sure we stay within arm's length of his bed. Now, we can roam freely with Eli in our arms. He's turning into a little boy! The last week has been miraculous for Eli. Only a week ago, he was still intubated, but this week he's really "turned a corner." It's so exciting to see him finally making forward progress.

We've already decided that he's going to take after his sister. Just like Paige, he likes to run behind schedule, but when he decides it's time to make something happen, it's a done deal in short order. We remember wondering if Paige would ever walk. Then one day, at 15 months, she just walked across the room, as if she knew how the whole time but was waiting for the right moment. Or her potty training... same thing. One day, that's it. Get rid of the diapers. Eli is showing to be the same. He finally got tired of laying in that bed, so he decided to heal and strengthen, all at once!

Here's our awesome little boy from yesterday.

Eli's smile

2009-06-05T07:07:00.000-07:00

We walked into Eli's room last night to find a WONDERFUL surprise! His naked face. This is the first time we were ever able to see his face without any tubing. No breathing tubes. No cannula. No feeding tubes. It was a beautiful sight! See for yourself:

Pleasing Progress

2009-06-03T07:15:00.000-07:00

Eli has had some encouraging progress this week. He was successfully extubated Sunday. He still remains on an oxygen cannula. But even the cannula flow has been weaned down in recent days.
Eli has also been placed on bolus feeds through his G-tube. Instead of being continuously fed a small amount, Eli is now getting a single large amount every 3 hours. Before his sugery, this led to acid reflux and severe drops in his oxygen saturation levels. The staff is monitoring him closely as they are feeding him. So far, he is tolerating his feeds well! This is great progress!
He is supposed to go into the Cath Lab sometime this week. This will give us the answers to what we will do during the next phase of Eli's surgery/healing.

Slow going

2009-05-29T06:46:00.000-07:00

Just a quick update on Eli's progress. He is SLOWLY recovering. He is still intubated and slightly sedated at this point. They did attempt to extubate him last Saturday, and he failed. They might attempt it again this weekend. He is being fed through his G-tube. He was started on a small feed and SLOWLY increasing it to his full feed amount. This is to be sure he tolerates and digests his food properly. He hasn't had anything in his tummy for a few months now, so it needs to be stretched out.

Please continue to pray for:

healthy strong lungs for Eli.
endurance for Jason, Tanya, and Paige.

Paige's Water Park

2009-05-21T08:03:00.000-07:00

We pulled out Paige's pool yesterday and created a water park with her swing set. At first, she was scared to go down the slide, but eventually did. There was no stopping her after that! In fact, first thing this morning she asked to put on her swimsuit to play in her pool. Free admission for any friends that want to join her at her new water park.

Fundoplication Results

2009-05-19T08:21:00.000-07:00

Surgery went fine. The only complications were half expected, and totally prepared for. The intent was to go in laparoscopically, so they inflate the abdomen with CO2. This pushes on the diaphragm, and puts some pretty decent pressure on Eli's lungs, and they didn't take that very well. Think of the lungs like a sponge... they were squeezed pretty hard, and couldn't do their job. So they had to deflate the abdomen and perform the surgery classically, with an incision. Otherwise, everything was as expected. One fundoplication, one G-tube.

The squeezing of the lungs caused a little trauma, so they're using the respirator to restretch those lungs back out. Eli will probably be intubated for a couple days so this can happen. As we left late last night, his numbers and bloodwork showed the lungs to be performing their job better than immediately after surgery, so he appears to be on the right track. This is good, as they'd obviously like him sedated for as short a period as possible.

Eli's next step is still a few weeks out, when they take him to the cath lab to measure blood pressures inside his lungs. This is how they'll be able to tell if he'll be ready for the Glenn procedure, where they route the superior vena cava (upper body return flow) directly into his lungs instead of to his heart. Here's just a quick recap:

Your typical cardio system has a flow pattern of: Heart>lungs>heart>body, repeat. The heart pumps blue blood to the lungs, it comes back to the heart red, then gets pumped out to the body red, and comes back blue. Repeat. Eli only has one pumping chamber, not two, so his blood flow will be altered to: Heart>body>lungs, repeat. Red blood will go from the heart into the whole body. On the blood's return path, it will make a passive journey through the lungs, turn red, and come back into his heart. Repeat. His blood's flow through the lungs will only be passive, not pumped like yours and mine, so the lungs have to be in good shape in order to still flow blood even though the blood pressure is now much lower.

And there's your anatomy lesson for the day! Thank you for continued prayer, continued support, and a continued outpouring of love on us. Today, we're headed to the zoo with Paige, then lunch with Nana, and the afternoon with our sedated little boy.

Public Prayer Follow Up

2009-05-17T22:39:00.000-07:00

Tanya and I just wanted to take a quick minute to thank so many of you for all the support you're giving us. The last count was over 100 people at the prayer walk this evening, in addition to all the notes of encouragement we got from people who weren't able to make it. For everyone to take a couple hours out of their day, drive 80 miles round trip, and pray in record heat (105 degrees today!) is more than we can really wrap our heads around. To so many of you who couldn't make it due to geography, illness, or other conflict, you mean the world to us, also.

Thank you, Pastor Jim, for assembling some sort of complete project out of the broken pieces of a puzzle I threw at you. Thank you everyone else for participating in an act of blind faith. Thank you, CHCC security team for making sure we weren't terrorists... multiple times! Ha!

Tomorrow morning, we're back at the hospital real early for Eli's rescheduled fundoplication and G-tube. With a little luck, they'll throw in a circumcision while he's knocked out. We're excited because his surgeon is Dr. Allshouse, the head of all pediatrics. His anesthesiologist is Dr. Seiden, the head of all medical staff. Both of those names carry a lot of respect with the nurses, and everyone tells us we're in the best hands possible.

Unlike during his first surgery, Internet access is now filtered at the hospital, and it makes posting to this blog very tedious, and using Facebook almost impossible. But we'll do our best to keep everyone updated.

To those of you who took pictures this evening, we'd love to have a copy of those. If you're able to forward any, my public email address is adpro_design@hotmail.com .

Talk to you all soon. We need to get some sleep tonight.

Public Prayer for Eli this Sunday at CHCC

2009-05-14T22:00:00.000-07:00

You've all been so great with your love and support, we can't even begin to put our appreciation into words. For everyone who's been tagging along, anyone who'd like to support us further, anyone at all who would like to pray with us for Eli, we feel led to dedicate some time to corporate prayer at the hospital itself.

Sunday @ 6:30pm
Prayer walk at Children's Hospital
Anyone who would like to come, is invited. There are a lot of you here. If you're reading this, this invitation includes you.

As Eli's health seems to continually decline, Tanya and I have been begging God for an understanding of why this is happening. We've attempted to dedicate this entire process to the glorification of our Creator, but it's easy to be bold with your faith around your friends. It has become crystal clear that Tanya and I need to mature to be less private and internal with our faith.

I have been reminded of Joshua 6, when, in faith, the Isrealites marched around Jericho. Similarly, we feel led to put together this time of prayer and public confession of our faith. We pray that you might find the time and desire to be there with us.

If you have any questions, we're glad to help. Let us know.

- Jason and Tanya

Storing up for winter

2009-05-12T16:55:00.001-07:00

Eli’s health took a little nose dive this morning. Nobody’s exactly sure why that happened, but as I write this, he’s back to normal. For some reason, he had a short stint of poor oxygenation. As we visit with him this afternoon, he smiles at us, and is as active as ever.

We had a bit of a tough conversation with Eli’s cardiologist this afternoon. It’s sort of hard to explain without going into extreme details, but I’ll do the best I can. Eli’s next cardiac surgery is supposed to be the Glenn, in which they route his upper body return blood flow directly into his lungs instead of his heart. There are beginning to be slight concerns that this won’t be possible, due to the development of his lungs. The veins in the lungs have to be extremely free and non-scarred or calloused for the Glenn to be an option. Given the fights he’s had in his short life, both Eli’s cardiologist and cardiac surgeon are concerned this might not be the case with Eli. They will be testing for this before his surgery to verify.

Should his lungs show significant damage or incapability, the door to the Glenn becomes closed, and we would be forced into looking at other options. We aren’t heading down that path yet, so we don’t know what all those options are, but we do know that it will make our struggles to date seem rather trivial.

Please understand clearly: This isn’t the case. It’s a possibility. We were just made aware of the possibility that this could get ugly.

In addition, I’ve recently been hit with several stories of complete failure before growth. From completely different areas of my life have come stories of lives shattered and people giving up before greener and greater pastures. I have a lot of fear for the implications of these stories.

Please pray that Eli’s lungs are sufficient.
Please pray for an outpouring of miracle healing like we’ve never before seen.
Please pray for Tanya and I to be more disciplined in prayer.

I feel the need to remind myself what was written in November, 3 months before Eli was even born:

There are many things that create a foundation. One of the foundational pieces of our life is our understanding of how God works. God is in control of all. Everything that happens, therefore, is orchestrated by God. God does things for his own glory. Therefore, anything that happens, anything that is, was intended to bring glory to God. Regardless of how terrible, unfair or just plain pointless something may look as you're facing it, its grand scheme value is in the glorification of God.

This is why we continue to live.

False alarm: No surgery today

2009-05-11T10:51:00.000-07:00

Just to keep everyone updated, there was no surgery today. Eli went down to holding, and we met with the anesthesiologist first. There had been confusion on the timeline for when Eli was deemed far enough beyond his cold to be ready for general anesthesia. All we've heard this whole time was "4 weeks." The question was whether 4 weeks started at diagnosis, being clear of the virus, or being clear of all symptoms of the cold. The anesthesiologist confirmed today that it was 4 weeks from being totally clear of all symptoms. That was only in the last couple of weeks.

The surgery is on hold until Eli is fully ready. We expect 1-2 weeks from now.

We continue to thank you for supporting us and praying with and for us.

Fundo Monday

2009-05-08T22:51:00.000-07:00

Eli is scheduled to go into surgery for his G-tube and fundoplication on Monday morning at 9:30. We don't have many details, except that they are going to attempt the surgery laproscopically. If Eli proves not able to handle the pressure from the CO2 they use to inflate the body, they will continue the surgery conventionally.

Please pray with us that:

Eli stays healthy through the weekend and is strong enough to endure the surgery
The doctors can assess Eli correctly in his readiness for the surgery
The surgery can be done laproscopically
Eli recovers and heals quickly
God's glory is fulfilled

A note about visitors:
While we would love your company during Eli's surgery, the hospital restrictions are going to keep you from coming into the hospital. Swine flu restrictions are still in place and only 2 primary care givers are allowed in the hospital, even for surgeries. We will do our best to keep everyone updated.

Family Photos

2009-05-03T22:27:00.001-07:00

There's not a lot to report. We just wanted to share some photos of Easter, when Paige was allowed to see Eli. And today, he smiled.

Fundoplication

2009-04-27T21:23:00.000-07:00

It's time for another technical detail and number heavy post. It's the only way to help you see the whole picture and understand what we're facing. There's a lot to digest here (no pun intended), but it's a necessary evil. First, some terminology.

NG: Nasogastric tube. Feeding tube into stomach.
NJ: Nasojejunal tube. Feeding tube past stomach, into small intestine.
G-tube: Gastric tube. External feeding tube through abdomen into stomach.
Fundoplication. Surgical alteration to remedy reflux.
Reflux. Acid reflux. Stomach fluids in the esophagus.
Bolus Feed. Feeding that is not via constant drip.

Eli needs 60ml of milk every three hours. Previously, he had been matured into this level of consumption. At one time, he actually took an entire 60ml from the bottle. Typically, he would only take about half, and the rest would be put into his NG, so all 60ml made it into his stomach. This is called a bolus feed. Then he got sick, and his NG was lowered into an NJ, bypassing the stomach and eliminating the chance of reflux. When fed via NJ, he goes from 60ml every 3 hours to 20ml/hr in a slow drip, a constant feed.

As he began working past his cold, they brought his feed tube back to an NG, and returned to bolus feeds, but at a lower rate, since his stomach hadn't had anything in it for 2 weeks. They started with 30ml bolus, and he did OK. They told us they'd do a gradual increase up to the 60ml full feed. When we returned the next day, he was back to an NJ and constant feed. They told us they increased his bolus feeds by 5ml every feed, until he was back at 60ml. That means they "gradually" increased his feeds from half to full over 18 hours. He had reflux issues, and couldn't handle the full feeds any more. Hence, the return to the NJ.

It struck Tanya and I as odd that they'd ramp him up so quickly. He's never done anything quickly his entire life, as you all well know. We start doing research and found that the number one cause for reflux is overfeeding. It seemed to us (now, we're obviously not doctors) that they needed that increase to be much more gradual. On the scale of weeks, not hours. The problem is that Eli would starve if only fed half feeds for a week.

To stop the reflux, they want to do a fundoplication, which is a permanent "tightening" of the sphincter at the top of the stomach, so he won't be able to reflux. This strikes both Tanya and I as a rather permanent solution to a temporary problem. The fundoplication is permanent, and has life-long side effects. Primarily, Eli would never be able to burp or vomit for the rest of his life. All babies have reflux, to some level, and they grow out of it. Typically, this happens between the first and second year, but almost every baby matures past it.

As we've grown accustomed, Eli's cardiac condition influences the immediacy for their concern. The primary concern with reflux is aspiration of the reflux... getting the fluid into his lungs. Eli's lungs are currently the most closely watch organ in his body. His heart defects and all his surgeries are based around oxygenation of the blood. Obviously that means the heart, but also the lungs. He is extremely sensitive to any lung damage, inflammation, or irritation. A common cold inflames the lungs, making them less effective, lowering his oxygenation. This is why a common cold sends him to the ICU. Also, aspirated reflux causes damage to the lungs, hindering their ability to oxygenate the blood. Our cardiac surgeon has made us aware, a severe reflux episode could be extremely detrimental to Eli. He's even seen cardiac kids die from reflux aspiration.

We have verified three options with Eli's pediatric surgeon (whose own child had a fundoplication 16 years ago).

Go through with the fundoplication. Remove risk of reflux. His recovery requires he stay at CHCC until second cardiac surgery in June/July.
Continue to feed him NJ indefinitely. Remove risk of reflux. This feeding routine requires he stay at CHCC until second cardiac surgery in June/July.
Change his feeding routine to a mix of NG and NJ. Feed 30ml into the NG, and 30 into the NJ. As his stomach is more ready, change that mix. Continue this until, eventually, his stomach works back to full feeds. Timeline unknown.

The doctors agree that options 2 and 3 would both help resolve the problem, but there is yet another complication. These assume his reflux condition doesn't change. If we were to forego the fundoplication, and he were to develop worsening reflux issues after his second surgery, he would not be ready for the fundoplication surgery until many weeks after his cardiac surgery. This would leave them with very few options to avoid the reflux. In addition, option 2 isn't really an appropriate option. It would require he stay there, because an NJ tube can't go home (an NG can). That means he'd be sitting in a hospital room, otherwise capable of going home, except for his eating routine.

And the final piece of influence.... There must be a 4 week wait between the fundoplication and the second cardiac surgery to allow for healing. With the doctors guessing this surgery to be in June/July, that doesn't give us a very big window to make sure we get the fundoplication taken care of. A decision needs to be made soon. They want to do it this week, if his lungs have cleared out the cold he had, and are ready for general anaesthesia.

So here's the big picture in review, simplified down. Eli isn't handling full feeds, he refluxes. They want to solve this with a fundoplication. They are taking the conservative "cover all your bases" approach. We like the idea of graduating him up to full feeds over time with a combination NG/NJ tube, but don't want to risk his health.

To be totally fair, every doctor we've spoken to supports the fundoplication. But this is their job, not their lives.

Please pray with us, as we're begging God for the wisdom to make the right choice for Eli. We're on our knees as much as ever with this decision.

Numberless

2009-04-19T22:20:00.000-07:00

When I entered Eli's room this evening, he was asleep. All his monitors assured me, he was very asleep. He always looks so peaceful when he sleeps. Tonight, the only pieces of technology he has attached to him are the little round stickers on his chest, and the tiny feeding tube in his nostril. His hands and feet are free to move, and they're showing few visual reminders of so many different tubes and wires he's had hooked to him for the last two months.

I sit and listen to him breathe. He has such a short breath, but he always does. You can see each breath as his little abdomen sucks in under the ribs. He's so small, you can actually see his chest bump with each heart beat, if he's still enough. The dosing unit for his milk feeds beeps, warning that it will be empty soon. The nurse heads off to prepare another dose. He's getting the good stuff now, boosted with even more calories than before, to help put some weight on our little boy.

He begins to wake up and starts looking around the room. I wonder what it feels like to look at a hospital ceiling and not know this isn't normal. This is the only place he's ever slept. It's been there every time he's ever woken up, his entire life. After a few moments, I pick him up and hold him in my arms. He continues to look around the room, and at me. He doesn't fuss, at all. For a change of pace, I put his chest against me with his head on my shoulder. He struggles a bit. This isn't an orientation with which he's familiar. But he doesn't argue. His monitors don't like this orientation, and they begin with protests of "No Signal." I can see he's absolutely fine, so I silence the alarms and talk to Eli.

As I cradle him in my arms, on his back again, he begins to communicate a little annoyance with me. He doesn't like something, but I can't tell what it is. I change his position, and he's quiet for a while. Tonight, he doesn't have a shirt on, but I'm completely gowned up and am wearing gloves. I've decided I want to touch him, with my own skin. I take off the gloves, sanitize generously, and hold him again, with my bare hands against his bare neck, back and feet. This is my little boy, and it feels nice to hold him human body to human body. I remember the first time I could touch his skin with anything more than a single finger. It was on his back, just like this, a couple weeks after his surgery. I placed my entire open hand across his exposed back and felt his warmth. But it's different tonight. Emotionally, he's graduated beyond a medical miracle to being my son. I desperately look forward to bringing him home and showing him the world. I can still feel a little raspiness in his lungs, as he fights his cold.

I have two very specific goals, based more around my own desires than anything else, but important to me nonetheless. I want to go to a Cubs game in Wrigley Field with Eli. The red billboard out front with scrolling marquee, the brick and the ivy, the 7th inning stretch (even though Harry Carey has long since passed), and the bleachers on top of the apartment buildings beyond left field. To me, this is what baseball is all about, and I absolutely love it. I also want to see the top of Half Dome with Eli. I've never seen it before. I've gotten close. I was in bad shape ten years ago when we tried, and even worse now. Who knows what a train wreck of fitness I'll be in another ten years. But if Eli's heart is capable of making it up there, we will make it to the top.

As the evening progresses, he's becoming more and more agitated. I don't seem to be able to calm him. We change his diaper and try wrapping him in his blankets a little better. Then it becomes obvious... he wants his pacifier or a bottle. He can't have a bottle right now because of his cold, they're feeding him directly into the intestines. I wonder if he has hunger feelings, since his stomach has had literally nothing in it for many days. His body is well fed, but what about his stomach, and the feelings it produces?

He's really worked up a nice, strong cry by this point. The nurse is off to locate a new pacifier, his seems to be missing. I rub his eyebrows while I talk to him. Paige always loved this, and so does Eli. His eyebrows are red like his hair, and a little wild out at the the ends. Tanya and I have laughed that they look like old man eyebrows. The nurse returns with a new pacifier and I offer it to Eli. He immediately takes it and is silent. The nurse gives him his medicines and vitamins, takes all his vitals, all with his complete cooperation.

He's been awake for the last hour, and is starting to fade off into sleep again. As the pacifier movement decreases, so do all the numbers on the monitors. He's fallen back to sleep, looking just as he did when I arrived earlier this evening. I say my goodbyes, wind up his mobile, and head home with the sound of "Lullaby" getting quieter as I head through the halls.

Paige & her park

2009-04-18T15:23:00.000-07:00

Last summer, we found a swing set on clearance, so we bought it. We've been working real hard on redesigning the backyard, so it wasn't until last week that we got the swing set built. Paige LOVES to swing, or "go to the park," as she calls it. Paige finally has her very own park, at home! She'd love to have friends over to play with her, that's for sure! Here are some pictures of her exploring her new park.

Running its course

2009-04-17T21:47:00.000-07:00

When Eli became sick last week, they immediately began testing to find out what he had. Thankfully, he was negative for RSV. However, he was positive for Parainfluenza Type 3. His symptoms are congestion and a cough. Because of his fragile state, his recovery has been delayed. We have to wait for the virus to run its course, since it cannot be treated with antibiotics.
In the beginning of his infection, Eli also showed signs of acid reflux. This is common for healthy babies and even more common for heart babies. For now, his feeding tube has been pushed down into his intestine (instead of his stomach) and he is on a continual drip feed. Once the virus is cleared, they will pull the feeding tube back to his stomach and attempt bolus feeds, or large feedings every 3 hours, just as before he got sick. We are hoping the reflux is minimal and can be treated with medications. If the reflux is beyond medication control, Eli may have to have a surgery to minimize it.
Current praises:

Eli is stronger and is slowly overcoming his flu virus
God has blessed us of 2 months with our baby boy

Current prayers:

The virus clears quickly
Acid reflux is minimal and can be treated with medications
Eli can gain sufficient weight to be brought home
Jason, Tanya and Paige have the endurance to continue on the race God has put them on.

Cough and congestion

2009-04-14T14:05:00.000-07:00

Eli caught his first cold. It started as a cough, and has now turned into severe congestion. For most of us, it's not too bad. For Eli it is. He already struggled enough to breathe, now he is all stuffed up. He has been on oxygen for the past 2 days, when he had been without it for a week. He is very sweaty and fussy, too. They have stopped giving him breast milk and are going to give him IV fluid to keep him hydrated. There is talk of having him intubated again so he can breathe easier, though it has not been done yet.

Please pray with us:

that the cold passes without going to his lungs and chest
that he can breathe on his own and not have to be intubated again
that his feeds can resume and he can begin to gain weight
for Jason and I that we are strong and encouraged by any progress, not discouraged by a "simple cold".

Baby steps

2009-04-09T09:55:00.000-07:00

Man. When we don't post, you all let us know! There really hasn't been too much to post lately.

We talked with Eli's doctor yesterday and he said we have basically 2 things we are working on to get him home. He needs to detox and eat. We are still weening him from Methadone and Valium. Whenever they cut his doses, he does show signs of withdrawl (sweaty, cranky, large pupils). Both doses are very small, but he is dependent on them. Cutting him cold turkey could send him into seizures. We must take it slow!
His doctor also thinks he is not eating as well as he should because of the drugs. They cause him to be very sleepy. When he is very sleepy, he doesn't have enough energy to eat. Eli is still offered the bottle at every feed. He'll usually drink anywhere from 10 mL to 25 mL before he poops out. The rest of the bottle is fed through his feeding tube. After the detox, Doc thinks he'll become a better eater.
There are a few housekeeping tests they are doing, just to be sure his body is working properly. They are running tests on his thyroid, adrenal gland, and tummy. These tests are just to make sure they are all working properly. He's been on a lot of drugs for his whole life, so they just want to be sure he is okay without the drugs.
It is still a matter of weeks before Eli actually gets to come home. We just need to take it slowly. As our doctors have constantly told us, "We have to take baby steps."

Eight Years Ago

2009-03-31T09:36:00.000-07:00

Alright, I have to steal the keyboard back for one post...

It was 8 years ago today that Jason and I walked down the aisle to vow before God our commitment to each other. I remember people asking me if I was nervous. And I remember very vividly being very calm, as I knew this was the man God brought for me to spend the rest of my life with. I'm certain that Jason felt the same.

Over the past 8 years, we have been through lots of things. Jason worked hard while I finished school. He supported me through my first years of teaching. When I had the spare time, he encouraged me to volunteer and work at the zoo. Now he works so hard to allow me to stay home with our kids. It's been a huge sacrifice for the entire family, but so worth it in the end.

Jason is the best daddy I could ever imagine to Paige and Eli. He loves to play with them, love on them, and grow them to know and serve God. There is no way these kids will grow up not knowing their Daddy loves them very much. As a mom and friend, it is amazing to watch Jason with his kids. I love to watch him play with Paige.

In this most recent storm we have endured, I can't imagine going through it with anyone else. Jason has been a rock and huge support for me through it all. As we have to make decisions and as we learn more about Eli's condition, I'm so glad we are in it together. Jason and I see so many things the same, we rarely have to discuss them in length to come to a conclusion and decision.

Reflecting on the past 8 years and what God has done in our lives, I know His work is in the middle of our marriage. Everything we have and will endure is to shape us to what God can use for His glory. Jason and I are in for the long haul. We have a vision for our marriage. We want to be 80 years old, walking on the beach holding hands, madly in love with eachother. The only way we can do that is by enduring the times we are in now. For better or worse.

Jason, I love you more today than I did 8 years ago. Thanks for being there to accept me as your wife as I walked down the aisle to you. I look forward to 50 more years with you, so we can be 80 and walking on the beach together.

Okay, you can have the keyboard back now...

Getting dressed and drinking milk

2009-03-29T22:09:00.000-07:00

Eli is doing very well, lately. He's been moved to the "less-intense" side of the ICU. His old room was in a set of rooms designated specifically for high-needs cardiac patients. Eli had to give up his room for someone with higher needs. He continues to build up his breathing strength, but he's been extubated for almost a week now. "He's on his own," as the nurses say.

He's also starting to take milk from a bottle. He's not great at it, but he's getting used to it. They give him as much as he'll take in 15 minutes, then feed him the rest through his feeding tube. The bottom end of the feeding tube, incidentally, has been raised from his intestines all the way up into his stomach. While he used to have a direct shot into his "gut," all his nutrition now comes through his stomach like the rest of us.

We've had the opportunity to change a few diapers. What an unusual blessing this is, to finally get to change a dirty diaper ourselves. Today, we even put some clothes on him!

The medical staff has always refused to give us times and dates, because Eli dictates them, they don't. So while we don't have actual numbers, it seems very fair that we should expect Eli home before Easter. This will raise a few new concerns we hadn't considered. Eli has to stay healthy. He has another surgery some time this summer, and to get sick before then could be a major set back.

This has led us to an unusual realization. We've tried very hard to keep everyone as updated as possible, through this blog. There are so many who are reading, and trying to stay informed, to let everyone know individually (letters, phone, whatever) would have been impossible. This blog has served as a wonderful piece of therapy for us, as well. The transparency we've been afforded has been great. In fact, we hadn't realized how tuned in most of you were until recently, when we started talking about holding Eli. We've been put into a really hard spot. We now recognize how closely you've all been following, and how attached you've become. So many have become excited about finally getting to meet Eli and hold him, and all those little things that make babies so great.

Having pulled you all in so closely, we're now forced to ask everyone to keep a bit of a distance, in a manner of speaking. There are two reasons behind this. First and foremost is Eli's continued health. The more who hold him, and love on him and everything else... the more chance he has of getting sick. In addition, he's still a little overwhelmed by human interaction. It doesn't take much to get him worked up. Then his heart rate increases, his breathing accelerates, and his blood/oxygen saturation begins to drop. You and we have red and blue blood, Eli has all purple. We're used to 97% oxygen saturation, he's used to 85%. When he gets worked up, it drops into the 60% area, and we've even seen it drop into the 40% when he's extremely worked up. When we get home, we're not going to have all these special monitors any more, and we're going to have to learn how to read him ourselves.

Between these needs, and his need to stay healthy, we're going to keep him a little isolated. We still intend to be in public, we're not turning into hermits. You should expect to see us at church every week, and at the grocery store, and so on. We don't want people to avoid us, by any means. We just hope we don't offend anyone when they ask to hold him. And this brings us to our second reason for some space... we need to figure out how to be a family, finally. What's going to happen with Paige, who's been a role model child with constant attention? What are sleeping arrangements going to be like? What will his needs be, and will Eli have special requirements?

To make a long story short (I'm not so good at that, am I?), we still need all of you. Please continue to call, write, and even visit us. But also please also give us some time to understand how to care for a very fragile little baby before we're as reckless with him as we were with Paige (I still laugh when I think of how much we used to scare some of our friends with how daring we were with her). There are always adjustments to be made with any new baby, his will just require more attention.

The pictures above are from today, when mommy was bottle feeding him.