The next morning, the labs looked good and on paper, the heart appeared to be the perfect match for Davis. Of course, we knew there was a chance the surgeon would look at the heart and decide it wasn't the right heart for Davis, and we wouldn't know that till the last minute. Tucker and I spent the day holding Davis and taking his 5 month pictures. We were excited, anxious, and dismayed all at the same time. One thing Tucker and I both struggled with was knowing that in order for Davis to live another baby had to die. That is a hard place to be. Praying for a heart felt like praying for a baby to die. Having nearly lost Davis several times, that's a thought we couldn't even fathom. Since the day Davis was placed on the list, we prayed for the amazing family that would give him a second chance at life.
Getting some play time in before surgery!
Snuggling with mommy.
Davis was taken back to the operating room at 7:15 pm. We were sent out to the waiting room for the night. We did our best to nap and try to get some rest, however our efforts were futile. Every so often someone would come out and give us an update. We knew the surgery wold take longer than a typical transplant due to the surgeons also having to remove the Berlin. There was some delay, because there was an accident where the donor heart was located. We were frustrated and anxious, but my thoughts immediately went to the donor family and what they must have been going through. Their sweet babe was enduring yet another procedure, giving life to several other babies. We could wait a little longer.
We were updated again when the surgeon arrived with the heart. Relief. Was this really happening? This heart was the answer to so many prayers. We thought it would fix everything. Unfortunately, when the heart was transplanted, it had difficulty beating again. Davis had to be put back on the bypass machine three times. The final time the surgeons decided to put Davis on ECMO, which is life support. Again devastation. After everything we have been through- the waiting, the crying, the pleading with God for his life- he still might not make it.
The doctors weren't sure initially what the problem was. Was it acute rejection? They didn't think so- it certainly would be rare that it would occur like that. Was the heart just damaged and tired from everything it had been through? They weren't sure, but everyone hoped for the latter. Fortunately, that was the case. Davis only spent three days on ECMO. Every day that passed, Davs' new heart became stronger and stronger. That was only the first step to recovery. He needed to be able to breathe on his own without assistance. It took Davis awhile for his lungs to get strong enough to be removed from the ventilator. After being extubated a couple of weeks, Davis was breathing room air without any assistance at all.
Soon after that, Davis was moved to the step down unit, CCU (Cardiac Care Unit). That meant he was finally doing well enough that he didn't need to be in the CVICU! He had made it! I can't tell you the excitement we felt! This also meant that we were one step closer to being discharged. Since then, that's exactly what we have been working towards. The only thing still keeping Davis in the hospital at this point, is feeding issues. Davis will not consistently take formula from a bottle. We know he has the skill; we know he can do it. One day he will latch every time the bottle is offered and suck the bottle dry, and the next day, he won't have anything to do with it. It's very frustrating. Due to this, it was determined that Davis would need a g-tube (gastrostomy tube). The g-tube will allow Davis to get the calories he needs to grow while we continue to work with him on feeding. It will also make administering his medications easier. Everything will be given in the tube, rather than having to worry about him spitting out the many medicines he needs.
Even more frustrating is the fact that this procedure has been pushed back twice. Davis has reflux, and we have been aware of that for quite some time. The day before he was first scheduled to have surgery (December 23), the stomach doctor wanted to determine if Davis did, in fact, have reflux, and if so, to what degree. If a child has reflux, a g-tube can make it worse, and they would need to do a bigger procedure called a fundoplication, where they wrap the stomach around the esophagus which prevents reflux from occurring. A ph probe would be able to give him that information. The only issue was that Davis needed to be off all his stomach meds (Zantac and Prilosec) for a WEEK! That meant we would be spending Christmas at the hospital. We were crushed. Immediately, we started making plans to have Hudson in Birmingham with us. We have the most amazing and supportive family, and they did EVERYTHING to make sure our Christmas was special. I can tell you, it was a Christmas we will NEVER forget! (I'll write another post about Christmas soon!)
Davis had the ph probe put in Monday morning and taken out Tuesday morning. The results are that he has severe reflux. That also meant he would need the fundo in addition to the g-tube. He was on the surgery schedule for Wednesday (December 30), when another doctor came in Tuesday afternoon to let us know that they couldn't do the surgery again, because Davis was on aspirin. Aspirin is a platelet inhibitor (blood thinner), and there is a risk of bleeding. He would need to be off aspirin for a WEEK! We were HOT! I swear I saw red. How in the world they missed that I'll never know. It's obvious that there was a miscommunication between our doctors and the stomach doctors. We hope and pray that this will be last delay. We are looking at it as positively as we can. It will give us both time to go home and spend time with Hudson, and Phyllis can finally go home and get some much needed rest. This additional time will also allow Davis to get off more of his medication, which is less that we will have to give after discharge. We are looking at the glass half full and counting our many blessings.
On Tuesday, we also found out that Davis has a heart murmur. This is being caused by a narrowing of the aorta where Davis' aorta and the donor aorta meet. This is causing the left side of his heart to work harder, and the muscle on that side is becoming thicker.The good news is, this can be corrected by catherization, They will put in a balloon that will open the aorta to where it needs to be. They also said this shouldn't delay us being able to be home in Auburn in 4-6 weeks after discharge. It's typically an out patient procedure, but because Davis is so little, they will want to keep him overnight to observe him.
At this moment, I believe we are fighting a spiritual battle. The Devil is throwing everything he's got at us just trying to get us to turn our backs on God. We will not let him win! We know God is still in control and fighting on our behalf! We will take Davis home again, and it's going to be soon! We thank God everyday for the wonderful family that chose to give life during their darkest hour. We thank God for the heart that is beating in Davis' chest. The first time I heard his new heart beating, I cried tears of joy, just like when I heard his heart beating at our first ultrasound. Thank you all for being with us on this journey and fighting this spiritual battle with us.
Everyone stopped by to cheer for Davis and wish him well!
We LOVE the doctors and nurses on the CVICU!
Headed to the OR!
We were updated again when the surgeon arrived with the heart. Relief. Was this really happening? This heart was the answer to so many prayers. We thought it would fix everything. Unfortunately, when the heart was transplanted, it had difficulty beating again. Davis had to be put back on the bypass machine three times. The final time the surgeons decided to put Davis on ECMO, which is life support. Again devastation. After everything we have been through- the waiting, the crying, the pleading with God for his life- he still might not make it.
The doctors weren't sure initially what the problem was. Was it acute rejection? They didn't think so- it certainly would be rare that it would occur like that. Was the heart just damaged and tired from everything it had been through? They weren't sure, but everyone hoped for the latter. Fortunately, that was the case. Davis only spent three days on ECMO. Every day that passed, Davs' new heart became stronger and stronger. That was only the first step to recovery. He needed to be able to breathe on his own without assistance. It took Davis awhile for his lungs to get strong enough to be removed from the ventilator. After being extubated a couple of weeks, Davis was breathing room air without any assistance at all.
Waking up post-transplant.
Davis' first smile post-transplant.
He saved it for mommy!
"Normal Heart"
Yipee!!!
They let us keep Davis' Berlin heart.
This device was Davis' heart for nearly 5 months.
Soon after that, Davis was moved to the step down unit, CCU (Cardiac Care Unit). That meant he was finally doing well enough that he didn't need to be in the CVICU! He had made it! I can't tell you the excitement we felt! This also meant that we were one step closer to being discharged. Since then, that's exactly what we have been working towards. The only thing still keeping Davis in the hospital at this point, is feeding issues. Davis will not consistently take formula from a bottle. We know he has the skill; we know he can do it. One day he will latch every time the bottle is offered and suck the bottle dry, and the next day, he won't have anything to do with it. It's very frustrating. Due to this, it was determined that Davis would need a g-tube (gastrostomy tube). The g-tube will allow Davis to get the calories he needs to grow while we continue to work with him on feeding. It will also make administering his medications easier. Everything will be given in the tube, rather than having to worry about him spitting out the many medicines he needs.
Even more frustrating is the fact that this procedure has been pushed back twice. Davis has reflux, and we have been aware of that for quite some time. The day before he was first scheduled to have surgery (December 23), the stomach doctor wanted to determine if Davis did, in fact, have reflux, and if so, to what degree. If a child has reflux, a g-tube can make it worse, and they would need to do a bigger procedure called a fundoplication, where they wrap the stomach around the esophagus which prevents reflux from occurring. A ph probe would be able to give him that information. The only issue was that Davis needed to be off all his stomach meds (Zantac and Prilosec) for a WEEK! That meant we would be spending Christmas at the hospital. We were crushed. Immediately, we started making plans to have Hudson in Birmingham with us. We have the most amazing and supportive family, and they did EVERYTHING to make sure our Christmas was special. I can tell you, it was a Christmas we will NEVER forget! (I'll write another post about Christmas soon!)
Davis had the ph probe put in Monday morning and taken out Tuesday morning. The results are that he has severe reflux. That also meant he would need the fundo in addition to the g-tube. He was on the surgery schedule for Wednesday (December 30), when another doctor came in Tuesday afternoon to let us know that they couldn't do the surgery again, because Davis was on aspirin. Aspirin is a platelet inhibitor (blood thinner), and there is a risk of bleeding. He would need to be off aspirin for a WEEK! We were HOT! I swear I saw red. How in the world they missed that I'll never know. It's obvious that there was a miscommunication between our doctors and the stomach doctors. We hope and pray that this will be last delay. We are looking at it as positively as we can. It will give us both time to go home and spend time with Hudson, and Phyllis can finally go home and get some much needed rest. This additional time will also allow Davis to get off more of his medication, which is less that we will have to give after discharge. We are looking at the glass half full and counting our many blessings.
On Tuesday, we also found out that Davis has a heart murmur. This is being caused by a narrowing of the aorta where Davis' aorta and the donor aorta meet. This is causing the left side of his heart to work harder, and the muscle on that side is becoming thicker.The good news is, this can be corrected by catherization, They will put in a balloon that will open the aorta to where it needs to be. They also said this shouldn't delay us being able to be home in Auburn in 4-6 weeks after discharge. It's typically an out patient procedure, but because Davis is so little, they will want to keep him overnight to observe him.
At this moment, I believe we are fighting a spiritual battle. The Devil is throwing everything he's got at us just trying to get us to turn our backs on God. We will not let him win! We know God is still in control and fighting on our behalf! We will take Davis home again, and it's going to be soon! We thank God everyday for the wonderful family that chose to give life during their darkest hour. We thank God for the heart that is beating in Davis' chest. The first time I heard his new heart beating, I cried tears of joy, just like when I heard his heart beating at our first ultrasound. Thank you all for being with us on this journey and fighting this spiritual battle with us.
I can't express the range of emotions I'm feeling right now after reading this amazing chronicle of this leg of your journey...there have been twists and turns , ups and downs , highs and lows... But through it all , you and Tucker have remained Faithful, enduring inexplicable medical events, sleepless nights, numerous trips back and forth from your home in Auburn and apartment in Birmingham, loss of time with each other for days on end, loss of time with you 2 year old Hudson, loss of work , ..... I can't even describe it all. The bottom line is that I admire this family and they have blessed me and numerous others with the way they have relied on God to carry them through this incredible , amazing miracle of life. To God be the Glory! Thank you Amanda and Tucker ..I love you !
ReplyDeleteAmanda, I know y'all are exhausted, sustained only by God's grace and mercy. I'm glad you realize the spiritual battle that it is. How are people able to cope without a relationship and complete dependence on God? We are continuing to pray with you without ceasing! What a testimony Davis has already. Love you!
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