Peek-a-boo Paige!

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

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

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

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

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!

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

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

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

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???

Hello?

Heellloooo?

Is anyone there?

Congenital Heart Defect Awareness Week

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

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.