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Maxwell Born/Lent to Us: Returned to God for work as an Angel: |
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Our mighty son Max, our first child, was diagnosed in utero, in late October, 2005 via Level 2 ultrasound, with Truncus Arteriosus, a very rare and significant heart defect. One statistic indicates that only 1 in every 10,000 babies has this problem. It’s not genetic, we have had no family history of congenital heart abnormalities, we were told that “it’s just one of those things that just happen” and they don’t know why.
The original plan was to correct this problem shortly after his birth, most likely within the first two months of his life. Max had a hole between his left and right ventricle which needed to be patched. He also was missing one of the two main arteries so a conduit was going to need to be inserted in place of the missing artery. His pediatric cardiologist explained that the success rate was about 90% and that Max had a lot of good things in his favor (i.e., he had all four chambers of his heart and it was otherwise functioning/beating as it should, it was the right size, etc. Typically, after a successful surgery, children are able to lead a relatively normal life.
At the time they diagnosed the Truncus, the doctor’s also feared that Max might have a chromosomal abnormality called DiGeorge Syndrome which would have lead to a whole host of other problems for our baby. We had an amniocentesis done within the 2 weeks following our ultrasound and thankfully found that Max had no chromosomal abnormalities!
We scheduled a c-section delivery, since Max was cozy in the breech position for the entire pregnancy, and we anxiously awaited the arrival of our little one. He was born at Northside Hospital in Atlanta, Georgia on Monday, January 23, 2006 to a very proud mommy and daddy! He was absolutely beautiful – such a blessing! He received a 9.9 out of 10 on his Apgar Test, which measured his overall condition at birth (10 is a perfect score). He had SO much dark hair, a colic like his mom and an adorable chin like his dad to name a few. He truly looked like a manly man! He started out doing very well, he was breathing on his own and his oxygenation levels were above what we had even hoped. The cardiologist confirmed that the condition was as we thought, with a twist. He did have Truncus Arteriosus, they still needed to insert a conduit and patch the hole between his ventricles but they also discovered that two pulmonary arteries that were supposed to connect had not connected. This would cause serious damage to his left lung if left untreated for a month or so.
A bed in the critical cardiac intensive care unit at Egleston Children’s Hospital opened and they moved him via ambulance (in his very stable condition). The doctors decided before making a decision about the timing of surgery, that they needed to do a heart catheterization to take pictures of all of the arteries and determine the best timing/route to go from there. The unexpected happened immediately following the catheterization and Max’s heart stopped. They had to resuscitate him and make a decision to as to whether or not to open him up then or to put him on a heart and lung machine. They chose the later and it is on that which he stayed for a few days. They were pleasantly surprised that the heart and lung machine appeared to really help and Max was even showing signs of wanting to breathe on his own. They highly medicated him in order to allow him the time to stabilize and gain his strength back in hope of him being able to have the corrective surgery by the end of that first week. They did however tell us that there was a possibility that he may need a heart transplant all together but that the catheterization showed that his two pulmonary arteries were separated to a greater degree than normal and that it may not even be possible.
SO much transpired in such a short amount of time, it’s hard to even begin to summarize everything. Needless to say, it was a roller coast of emotions, our days were filled with many highs and many lows. Max continued to be SUCH a fighter though and it was amazing how his strength continued to inspire his parents.
After the cath, they did a brain scan to make sure that when Max’s heart stopped beating, blood didn’t also form on the brain. We also had another scare. The doctor’s determined that one side of his heart was having to work too hard, it was filling one side with too much blood and something needed to be done. They decided they really needed to do another heart catheterization, one more intrusive and riskier than the day before. As you can imagine, after the traumatic result of the previous catheterization we were even more terrified since the risks were much higher, one of which included death. The hope was to purposefully create a new hole between the top two ventricles to alleviate the excess blood on one side and to force the heart to rest. This procedure was done by pulling a balloon through a small hole, making it bigger, and inserting a stent. We had to wait to see if the stint would actually do what they had hoped it would do but there was no guarantee that it would change anything. Fortunately, it allowed the heart to rest but unfortunately, it also created a small amount of fluid around the heart that had not been there, another something for them to monitor.
Max had daily chest x-rays and echocardiograms. He often showed many good things but also some distressing things. They were beginning to see more air in his lungs but one echo had showed that his heart was not pumping as strong as they wanted it to be, as strong as it needed to be. If he were to be forced off the heart and lung machine (which could happen for a variety of reasons), they did not feel that he could survive if his heart maintained the same level of pumping. Fluids were a concern and may have been causing the effect of the low level of pumping. They needed to get Max’s fluids to decrease and his urine output to increase. These things had to happen before he could get off the heart and lung machine. He needed to come off the heart and lung machine in order to do the surgery, so it was a domino effect that we needed.
They determined that Max did have a small amount of fluid in one area of his brain. They were initially not too alarmed by the amount and the neurologists indicated that it is actually sometimes found in some newborns that are completely healthy, but it was another something to monitor.
We were approached by the head of the CICU. He wanted to get us thinking about the possibility of needing a heart transplant – not because they had given up on the originally planned corrective surgery but because it is an extremely long and time sensitive process to even become a potential heart transplant candidate. The earlier we considered it the better as timing would be critical. As you can imagine, not something we really wanted to think about on top of everything else but something we needed to take into consideration.
The roller coaster ride continued. So much happened in a few hours of time. It felt like an entire lifetime of happenings would fit into one day. As I told one group of friends, it truly felt like we were starring in the midst of a movie or something.
We saw God work miracles in Max. He received a heart transplant in the early morning hours of Monday, January 30, 2006. It is very rare for baby hearts to come available, it is even rarer to find a compatible heart, especially in such a short amount of time. Max was “listed” on Saturday and 24 hours later we were told that they had a matching donor heart in the southeast region, an answer to SO many prayers. We receive the news at about 7:45 p.m. They prepped him for surgery around 10 p.m. and the surgeon flew somewhere in the southeast region to pick it up. He returned with the new heart around midnight and the surgery followed shortly thereafter. Somewhere between 6 a.m. and 7 a.m. the surgery was complete. As you know, another little baby had to die for Max to live, another mother had to have the courage to donate his heart to us – something for which we will forever be grateful – it allowed us another full week with our son.
Because Max’s pulmonary arteries were not normal, one was very small and they were father apart than normal, the surgery was more complex than most. They took extra arteries from the donor in order to reinforce Max’s pulmonary arteries.
Although the transplant route was not our first option, it became clear that it was his best and most realistic option. Our theory was that every day we had with Max was a gift and that there was no “burden” too great for us when it came to choosing life for our son.
The day following the transplant was difficult. We received news that Max’s numbers were not all where the doctor’s wanted them to be – his new heart was not getting oxygen to his body’s organs to the degree that they had hoped. As a result, they decided to put him back on the heart and lung machine with the goal of hoping to be able to take him off in a few days. It wasn’t what we wanted or had anticipated but it would allow his heart to rest while the rest of his body adjusted to his new heart in his body.
Two days later, they did another brain ultrasound and found that Max had blood on the brain again. As a result they decided they had to take him off the life supporting heart and lung machine. The reason being that a blood thinning drug is used in connection with the machine and they feared that the bleed on the head would only get worse and so they had no other alternative. Over a period of a couple hours they began to take him off the life support. Once they took him off there was going to be no turning back, putting him back on it would not be an option. As you can imagine, we were terrified of the unknown – they had told us that Max would possibly not make it through the night, especially since they determined that they were going to have to do another surgery to insert a catheter into another artery, one to allow them to insert a kidney dialysis machine. The machine would do a portion of what the heart and lung machine would do – assist Max’s kidneys in regaining their ability to function faster.
Max, our little champion, gave the fight of his life. He withstood getting off the heart and lung machine and his numbers were all good, much better than expected. They put him on an oscillator which is similar to a ventilator but much more powerful and puts less stress on the lungs. This allowed him to have some breathing support. The next two days his numbers were steady and were where they wanted them to be. They were even able to reduce the oscillator support to only 70%. The oxygenation in his blood had even improved, something they were really worried about the day before. They redid his echocardiogram and it appeared as though his heart function improved. They took another x-ray and his lungs appeared to have improved as well. His surgeon had told us that he was optimistic that both the heart and lung would recover. He now had some other concerns though.
The dialysis machine had started to clot (something that is apparently common) so they had to make a decision as to whether they would take him off it for a while or if they would change it out with a new one. They chose not to put him back on a new one because in order to do so it would entail more blood thinners getting into Max’s blood stream. They had done another brain ultrasound and found that there was more bleeding on the brain than the day before and they didn’t want to risk making it worse by exposing him to more blood thinners just yet.
The blood on the brain was a major concern, as was the fact that he had not been able to put out any urine since they took him off the dialysis machine. It was kind of a Catch 22, they needed him on the dialysis to make the urine but staying off the dialysis would help prevent additional bleeding on the brain.
They didn’t know if the bleeding on the brain was catastrophic or not. Evidently, some small babies are able to absorb the blood and/or heal from it entirely but it was still too early to determine if any major issues would be the result.
They did another echocardiogram and despite his solid and consistently good blood pressure and pulse numbers most of that day, his numbers were kind of all over the board that night. The echo showed that his heart was tightening and they were assuming that it might be a result of him not having extracted urine in the previous 5 or 6 hours. They didn’t want to put him back on the dialysis machine though if they didn’t have to so they started him on some diuretics in hope of him producing urine on his own.
Our strong boy did begin to produce urine on his own, not as quickly as they had hoped but he had begun to put out record numbers, giving us hope. They scheduled another catheterization to go in and take more pictures and to test the new heart to see if it was rejecting. It was in route to that catheterization that Max’s heart stopped beating again. The doctors and nurses rushed him back to the CICU and continued to try their best to resuscitate him, to save his life. Max fought for his life, he fought for his parents, but God had another plan for Max. Mommy and Daddy were by his side when he went to Heaven.
February 07, 2006
The Bible says that there is a time to live and a time to die. Although we don't yet know why, Maxwell's time to pass came around 1:35 p.m. yesterday, Monday, February 6, 2006. We are comforted in knowing that he is now safe in the arms of Jesus. He has been embraced by our grandparents and my uncle and we are confident that he is smiling with his new best friend, his heart donor.
We were blessed with the gift of 14 days with our beautiful son. We got to hold him, look into his precious blue eyes, feel the grip of his tiny hands around ours, kiss him, sing him his favorite lullabies and tell him over and over again how much we love him. I'm reminded of a line from a movie that resonates in my heart - 'The sadness now is part of the happiness then' - in other words, we wouldn't be so deeply saddened now if we hadn't been so happy with him then.
It's ironic that Max's illness was his heart because it was his heart that touched SO many lives - from family to friends to strangers that were praying for him across the country. We continue to be overwhelmed and grateful to everyone for their prayers, love, support, cards, gifts, food and words of encouragement. Thank you to the beautiful and selfless LeAnn, the 12 year old girl that is in line for a potential heart transplant - who added Max to her prayer list and asked me to come to her room because she had a gift for me and Max. To Joshua and T.J.'s mother who did the same. To Ryan and Kaleb's families - others that prayed for Max during their hardest times.
Max had a short life but he lived more than most. His life was so evidently not in vain. Yet another demonstration of this is the night that we had my sister's minister visiting with us. He came to comfort us and to pray with us for Max. That night, he also ended up praying with Ryan's father, our new friend. Because of Max, Ryan's dad came to know the Lord and was saved that night.
Max was our 'little warrior' and he had a HUGE army behind him. We will forever be grateful to Children's Hospital and all of his doctors and nurses who truly have become an extension of our family. Todd and I have always said that we moved to Atlanta from Chicago for the weather but we now know that it was God who led us to be by this hospital. They had SO much compassion and they wholly and completely fell in love with our son too. It takes a very special person to do what these doctors and nurses do each day and night. When asked they say that although they see the sad times, it's all worth it because if they weren't there they wouldn't also see the miracles either. We saw SOO many miracles in Max's life alone. We are praying for miracles in the lives of those families and children we met and in those families and children who are yet to arrive there.
Todd and I consented for the hospital to do an autopsy on Max. That way, perhaps, they can hopefully determine if it was Max's pulmonary arteries that failed, if his new heart was being rejected, or exactly what happened as we do not know. Our greatest hope is that they can help future children with problems similar to Max. Although Todd and I are experiencing a pain greater than we have ever known, we have been blessed with sharing a far greater infinite and unconditional love for our son Max. We will continue to celebrate Max's life and celebrate his birthday each year. We will raise our future children knowing all about their big brother. We will forever be proud of our beautiful, strong, fighting Miracle Max. Although Max's life with us was short, his life in heaven will be for all eternity and the Bible insures us that we can look forward to holding him in our arms again.
Love, Max's Mom and Dad
Maxwell
1/23/06 - 2/06/06
One Year Later – January, 2007
As we celebrate what would have been Max’s first birthday, we continue to celebrate his life and all of the lives that he touched in such a short amount of time. In many ways, this was a very long year but in many other ways, it seems like only yesterday that we were holding our precious son in our arms for the first time. We want to thank God for the strength and peace that could have only come from Him in the days since Max’s death. Although we miss Max more than we ever thought possible, we are comforted in knowing that his heart is whole, he is free of pain and he is in a breathtakingly beautiful new home. The autopsy didn’t actually tell us anything new, aside from the fact that some infection had set in after the transplant. We think his little body had just had all that it could take. We truly feel in our hearts that had he lived he probably would have been very sick and so God knew to take him but not before we fell madly and deeply in love with him. We have lots of pictures, lots of memories and boundless amounts of love for our Max, all of which we will treasure and hold in our heart until we see him again.
We thank God for Max, for our faith, our hope, our love and for Max’s little sister, Savannah Nicole-Faith, our heart healthy little girl, due in April of this year! Every good gift is from above! We know that Max is celebrating with us and will continue to watch over all of us in the days and years to come.
“But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.” Isaiah 40:31
