In a way, the past 5 weeks seem like 5 years, but in a way they have absolutely flown by! We have made incredible progress since Day 1. Clay was born on Monday, October 24th. I will never forget that morning—I left our home before dawn. The night air was so clear & the thin crescent moon shown so bright. I saw a shooting star flash across the sky before I got in the car. Although I wasn’t expecting to give birth that day, I hoped that star was a good omen. By 3 o’clock that afternoon I was in the operating room awaiting the arrival of our Clayton Cash. A C-section was not my choice birthing option but it was what doctors recommended would be safer for baby & me. With Eric right by my side, we listened as Clay made a tiny squeak when he took his first breath. I could feel the weight of him on my thighs as the doctors lay him there to cut the umbilical cord—this is the closest I would get to holding my baby for 26 days. Less than 24 hours later, Clay was put on ECMO, a heart & lung bypass machine. The doctors gave Clay of 10-20% chance of survival without it & a 50% chance of survival with it.
After a successful transition onto the life support machine, the doctors planned to do the hernia repair surgery the next day. We were told that our baby’s aortic arch in his heart was narrow, which raised concerns for the surgery. They placed Clay on prostaglandins to keep his ductus arteriosus open to relieve possible stress. Our pediatric surgeon also warned us that if they got in during surgery & could see no left lung development, they would forfeit their efforts and there would be nothing else they could do for our baby. Thank the Good Lord, this wasn’t the case! During surgery, the doctors put Clay’s colon, small intestines, spleen & part of his liver back into place and they patched the hole in his diaphragm muscle with something made from pig intestines. After surgery, they said they could see a ‘nub’ of his left lung.
For the next 6 days Clay remained on the ECMO machine, buying time for his lungs to develop & body to heal. The day after surgery, the doctors put a feeding tube into Clay’s stomach & began continuously feeding Clay 1mL/hour of my breast milk. As he proved to handle the small amount of milk, they gradually upped his feeds. I believe 10mL/hour was the most he received while on ECMO. At one point I think Eric & I counted at least 13 different medicines hooked up to Clay’s IV, not to mention the numerous blood transfusions and extra platelets given often. He would have a head ultra-sound done every day to check for bleeding in his brain. Heart ECHOs and chest x-rays were also done daily. Blood gas tests were done every 2 hours to check oxygen levels, carbon dioxide levels, electrolyte levels, etc. Spending time next to Clay’s bedside was stressful to say the least. Eric & I would talk to him and touch his little feet and watch his toes wiggle in response. Or we would place our finger in his hand and feel his little grip. Those small movements were what got us through!
Finally, on Monday, October 31st, the doctors began working Clay’s lungs. They slowly turned down the flow of the ECMO machine & turned up the ventilator. He was handling the slow transition well, so the doctor decided to do a ‘trial off’ of the ECMO machine the following day. That night, a good friend created a “Breathing for Baby Clay” Facebook event & over 500 people declared to breathe for our baby on that fateful day. No one will ever know how much that meant to us. Lying in the hospital sleep room with our sick little baby across the hall, all I could do was cry as we watched our Facebook newsfeed light up with people rallying together for us & Baby Clay.
The following day was such a success. Clay proved to handle the ‘trial off’ very well & was decannulated that afternoon. After 8 days on ECMO, our baby was off the life-support machine & doing the work on his own! Praise God! Thinking back, I am amazed at the strength Eric & I mustered up to get through these terrifying days—but I know without a doubt we were not alone. Our awesome God was with us every step of the way, along with the most amazing family & friends in the world.
The next day after coming off ECMO, we were moved back into the NICU, in a nursery with roommates! This environment was so much better than his previous one—I was able to pull up a chair and stay a while in the new room. I finally felt like I was able to bond with my little man and he was being so much more alert—I seen both his little eyes wide open for the first time! I also changed my first dirty diaper! This was such a great feeling, to feel like I was able to care for my baby.
At 10 days old, Clay had his chest tube removed, which was draining gunk from his repair site. He also had his catheter removed—which meant lots more dirty diapers for me to change!! J
After first coming off of ECMO, Clay’s left lung was still very underdeveloped. He was retaining a lot of fluid and that fluid was filling the empty space where the lung was supposed to be—making his left ‘nub’ collapse. While this obviously wasn’t good, his vitals remained relatively stable & he was even able to handle his ventilator rate being weaned from 45 to 40—which meant he was doing all the work with that right lung & was doing it well! Still, we prayed & prayed that his left lung would open up and expand like a balloon. I would visualize this in my head all day & all night.
We could tell how uncomfortable the fluid retention made Clay. He did not like lying on his back at all—he had to be lying right side up or else his oxygen saturation levels would drop. He just needed more space for that right lung to do the work. The doctors gave Clay a diuretic to help him urinate off all the extra fluid. This helped enormously. Once most of the fluid was gone, his left lung finally had room to do work. We got reports from both the doctor & the pediatric surgeon that his left lung had expanded more than they ever thought it would—Thank God!
After Clay was off dopamine (blood pressure med) the docs started weaning on the nitric oxide. The NO rate was set on 20 and over a period of 3 or 4 days, they had it cut to 8. Over the next couple of weeks, the docs also increased Clay’s feedings from 10 to 12, then up to 14, 16, 18…until he reached his full feed amount of 30mL/hour of continuous breast milk. I am so SO glad Clay is able to get my milk. Pumping every 3-4 hours, even in the middle of the night, can get old but I know that it is the best thing for Clay nutritiously. It’s also good for me emotionally because I know I am contributing to my baby’s health & nutrition—and the doc says that is the most important thing for Clay, so his body can grow & develop & strengthen. Clay has done exceptionally well with his feedings—CDH babies usually have an awful time with reflux. Clay does spit up every once in a while, but for the most part he does great!
So, for the next couple of weeks, docs continued to wean on the nitric oxide, the morphine & versed (sedatives) & his ventilator settings. Next, we tackled the milrinone, which is another med that was helping with pulmonary hypertension. He did excellent with all of these transitions! The docs also took Clay off of his prostaglandins with hopes that his ductus arteriosus would close—once the duct was closed, we would know how his body would respond to his narrow aortic arch and we could tell more accurately how the pressures in his heart would be. Doc said he was afraid this could be ‘life threatening’ to Clay. They also didn’t think the duct would close on its own—that it would need to be closed surgically. ECHOs were done every two or three days to monitor possible changes. Changes did happen: the large PDA (patent ductus arteriosus) went to a moderate PDA, then to a SMALL PDA!! And Clay was not noticing these changes at all! His vitals remained stable, his blood gases remained stable, his heart was not noticing the narrow aortic arch & the pressures were fine! While his PDA has yet to close completely, the doctor said he was no longer concerned with his heart after these ECHO results...nothing short of a miracle, I believe J
At 26 days old, Eric & I finally got to hold our little bundle of joy!! What a sweet, sweet day this was! Feeling my baby in my arms was indescribable. We are so blessed to call this special baby our child and we thank God so much for his blessings!
After weeks of weanings & transitions, Clay was finally off ALL of his IV drips (remember there were once 13!) and his ventilator settings were getting minimal. We knew things were getting down to the nitty gritty. The doctor met with us to discuss his plan: on Monday, November 28th, he wanted to try him off the ventilator & on CPAP…BIG big day!! The fact that this was even a possibility at 5 weeks old, after all he’s been through, was truly a miraculous to us…and quite surprising to the doctors too.
So, this past Monday they extubated Clay and put him on CPAP (continuous partial airway pressure). Eric & I were able to witness this transition. For just a minute, Clay was totally off everything and it was so awesome to see! But once they got his CPAP mask on, he was not happy about it and I don’t blame him at all. The cannulas going up his nose, continuously blowing air into his lungs would have to be uncomfortable! It was obvious right away that Clay missed the ventilator. His little body was working so hard to move air in and out of his lungs. A blood gas was taken an hour after being put on CPAP and his CO2 levels were high at 74. Still, they left him on for a couple more hours hoping he’d level out. But another blood gas was taken and his CO2 levels were even higher at 89. CO2 levels this high could make a baby really sick, so there was no other choice but to reintubate and put him back on the ventilator. While his lungs have expanded so much, his diaphragm muscle just wasn’t strong enough to move air in and out of his lungs like it should. Considering the left side of his diaphragm is nearly all patch, it’s no wonder he was having a hard time. Until his breathing muscles grow & strengthen, he’ll remain on the ventilator.
After this unsuccessful trial off the ventilator, the doctor & surgeons began to talk tracheostomy. And that is where we are today. Ready to start the next steps, we are so very thankful to God for the continued progress our baby has made. And we are so very thankful for all the prayers and concerns and emotional, financial & spiritual support you all have shown us…it means more to us than you all will EVER know! I hope to share updates on Baby Clay through this blog regularly, so I hope you’ll join us as we continue on this CDH journey! Love to all!!