Saturday, December 26, 2009

Christmas Photos

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.



Friday, December 18, 2009

10 months!

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.
video

Sunday, November 29, 2009

Modeling with Paige

Montana de Oro, just before sundown.

After a 1/2 mile hike down to the oceanic cliffs of Mo
ntana 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!







Saturday, November 21, 2009

November Photos

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.

Monday, November 2, 2009

Halloween 2009

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:




Friday, October 23, 2009

How can we help?

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.

Thursday, October 15, 2009

Fall Pictures

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.





Tuesday, October 13, 2009

Cath Lab 2 Report

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.

Thursday, October 1, 2009

Cath Lab, Take 2

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.

Sunday, September 13, 2009

Defining Boundaries

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.

Saturday, September 12, 2009

Little Sister Sarah: Goodbye & Thank You

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.

Wednesday, September 9, 2009

Return to Morro Bay and Clean Air

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

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.

Tuesday, September 1, 2009

Witnessing a Miracle

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:


video

Sunday, August 30, 2009

Giving the Doctor a Look-See

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.

Saturday, August 29, 2009

Singing Eli

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!
video

Friday, August 28, 2009

Fighting a Head Cold

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.

Monday, August 10, 2009

Morro Bay 2009

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.







Tuesday, July 14, 2009

Lights and Tunnels

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.

Monday, July 13, 2009

Cath Lab Procedure

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.

Thursday, June 25, 2009

A New Pediatrician

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

Tuesday, June 23, 2009

Returning Update: Not returning

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

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.

Sunday, June 21, 2009

Homecoming

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. W
e'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.



Friday, June 19, 2009

Let's All Go to the Hospital!

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.

Wednesday, June 17, 2009

4 month update

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.

Sunday, June 7, 2009

This is how it's supposed to be

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.

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