Max's Heart

I get asked frequently about Max's heart and what they did during his surgery. So, for those of you who are interested, here is all the info that you ever wanted to know about Max's heart (probably way more than you wanted to know).

According to the info that we received from the orphanage director, Max's heart defect was diagnosed in utero. His mother was advised to travel to Kyiv, Ukraine to see a specialist, but she did not. I am not convinced that she didn't want to see a specialist, but rather that she could not go. Access to good (I am using that term very relatively) medical care there is not so simple. In order for her to see the specialist, she would have had to take a 15-16 hour train ride one way just to get there. She likely could not afford to see the specialist.

When Max was born, he was born very sick. He had his first open heart surgery at 11 days old. After recovering from surgery, he was sent from the hospital to the orphanage when he was about 2 1/2 months old.

 

Then, last summer, he was sent back to the hospital in heart failure. He was transferred about 2 1/2 hours away to a different hospital where he had his 2nd open heart surgery. You can see how blue he was here in this picture taken by another family who was there adopting from the same orphanage. This was shortly before he was taken to the hospital in heart failure.

After his 2nd open heart surgery, he was transferred back to the orphanage, but this time to a small room in the infirmary where he spent almost 24 hours a day in his crib. We met him about 2 months later.

When we first met him, we were told that he had Tetralogy of Fallot, which is the most common cyanotic heart defect. Usually, that requires one open heart surgery done before the age of 6 months. He had already had two. And just looking at him, I could tell he was still very cyanotic. His lips were blue. His fingers were blue. His coloring was not that great. Once we got him home, we found out that he not only had Tetralogy of Fallot, but he also had Pulmonary Atresia and Hypoplastic Branch Pulmonary Arteries. We went from a relatively simple diagnosis to a much more complex diagnosis.

If you care to know more about his particular heart defect, you can read about it here. If not, feel free to skip this part. Tetralogy of Fallot with Pulmonary Atresia is a severe variant of Tetralogy of Fallot and it includes a combination of five cardiac anatomic characteristics:

• ventricular septal defect(VSD—a hole between right and left ventricles)
• overriding aorta(moves toward right side of heart; located just over the ventricular septal defect)
• hypertrophy of the right ventricle(becomes abnormally enlarged because it’s attempting to compensate for the pulmonary obstruction)
• complete pulmonary obstruction(absent pulmonary valve; no connection between the right ventricle and the pulmonary artery)
• abnormal pulmonary arteries ( http://www.childrenshospital.org/az/Site515/mainpageS515P1.html ) 

 

Once his medical records were translated, we found out that the surgeries that he had in Ukraine were just palliative. They kept him alive, but didn't fix the problem. After his heart cath, I asked one of the cardiologists at Boston Children's Hospital why they didn't just repair his heart instead of doing the two palliative open heart surgeries. He said that it would have been too expensive for them to fix his heart, especially since he was an orphan. He told me that they could have repaired 100 VSDs just for the price of the conduit that they needed (because of his pulmonary atresia) to fix Max's heart. Wow! They could have done 100 open heart surgeries to repair 100 Ventricular Septal Defects (a hole between the lower 2 chambers of the heart) just for the price of one of the pieces that went into Max's repair. Now I can see why they didn't fix his heart (not that it makes it right). It is, quite honestly, amazing that they did any type of surgery for him when so many children do not get the surgery they need. But, at the same time, it shows me the seriousness of his defect at that moment. They would not have done surgery on him had he not been in immediate danger of dying. Yes, there are many children who need surgery in the orphanages of Ukraine and don't get it, but typically it is because the risk of dying isn't immediate. While postponing their heart surgery (or not doing the heart surgery at all) is definitely putting the child's life at risk and very likely shortening their lifespan, they are not likely to see the effects until long after the child has been transferred out of the baby house. This is terribly wrong and I wish that there was something we could do to get these children the medical care that they desperately need. I guess the best thing that we can do for them, besides praying for them, is to find them families before it is too late. It is hard to even think about what Max's fate would have been had he not been adopted. He would have likely never had a full repair done due to expense and lack of expertise.....he would have likely not received the medical care that he needed once he was transferred out of the baby house at the age of 4......he likely would not have even made it until then as he was already outgrowing the open heart surgery that he had done last year. I have been told more than once here at BCH that we literally saved his life, but I know that it wasn't us, but rather God who saved him. We are so thankful that despite our fears, we said "Yes!" to God and to Max.

 

So, what exactly did they do during this open heart surgery? The surgery took longer than any of us anticipated. From the time I laid him on the bed in Pre-Op as they were taking him back to the OR until the time that we could see him in the CICU was about 10 hours. It took a really long time to get through all of the scar tissue, but one of the biggest problems prior to going on bypass was that the central shunt (which was what Ukraine put in for his 2nd open heart surgery) was stuck to his sternum. From the time the first incision was made until he was put on bypass took almost 3 hours. Once on bypass, they were able to do a full repair. They took out the central shunt. They dissected and then patched both the right and left pulmonary arteries to make them bigger. They had to dissect the aorta to access the right pulmonary artery and then stitch it back. They patched his very large VSD. They placed a right ventricle to pulmonary artery conduit. For this conduit they used an 18mm pulmonary artery with a pulmonary valve taken from a cadaver. Once the repair was complete, they tested him off of bypass to make sure that his lungs could tolerate the repair without a fenestration (either a hole in the VSD patch or an ASD - a whole between the atrium, the top 2 chambers of the heart). He passed the test and no fenestration was needed. The nurse said that he came off of bypass like a champ, which is always good to hear! They were also able to fix the large bump on his chest that had formed because one of the wires holding his sternum together had come loose from his 2nd open heart surgery in Ukraine.

 

Max recovered very quickly from surgery. His oxygen sats went from the 70s prior to surgery to the high 90s. He was extubated the next day. He only spent 5 days in the Cardiac ICU before being transferred to the regular Cardiac Unit. He spent another 2 days there before discharge, although he wasn't cleared to fly home just yet. We had our follow-up cardiology appointment with Dr. Lang yesterday at BCH. Both he and Dr. Emani (our cardiac surgeon) are very pleased with the surgery and his progress and we have been cleared to fly home. We will be flying home today, just 12 days after his open heart surgery and only 15 days from the day that he was admitted!!!!!!

It will still take about 4 more weeks for Max to make a full recovery, and he is still on some medications for his heart. He will need to be followed closely by our wonderful cardiologist back home and our team here in Boston. Although he had a full repair, the homograph (the cadaver conduit) only lasts on average from 3-5 years before it will need to be replaced. Our cardiac surgeon here at BCH thinks that there is a possibility that the pulmonary valve from the conduit might be able to be replaced with a melody valve in the cath lab, but our cardiologist here at BCH thinks that it will likely require another open heart surgery before we can go that route. We also need to watch his aortic valve, his aorta, and he will also likely require some interventions in the cath lab in 1-3 years back here at Boston Children's and every so often to dilate his pulmonary arteries. But, for the moment, we will celebrate and enjoy Max's VERY successful surgery and quick recovery!

 

 

 

 I will praise You, O Lord, with my whole heart; I will tell of all Your marvelous works. Psalm 9:1

 

 

Purpose and Hope

Today, as Max and I sit in our hotel room near Boston Children's Hospital, I almost can't believe that we are here. Max had quite the long open heart surgery just 8 days ago. Just five months ago, we weren't sure if his heart would even be able to be repaired. There was a time, shortly after bringing him home from Ukraine, that we thought we might have to bury another son. I can vividly remember a conversation my husband and I had during this time. I can remember my husband telling me that if we did end up losing him that at least he would have known the love of a family. He was no longer confined to a crib. He was no longer living a life without knowing love, without knowing what it meant to belong, without knowing what it is to be held, to be snuggled, to be kissed, to be hugged, to hear I love you. He belonged now and he was deeply loved. Many children around the world never get to experience that.

I can't even tell you what if feels like to think you might lose another son. But we knew that God had called us to Max. He had prepared us for him. We didn't know what His plans were for Max, but we knew that we were committed to love him for however long God allowed us to keep him. Max deserved that much. He was worth any pain we might face. We just needed to trust Him.

And now, here I am with my son playing right in front of me. Not only is he alive. Not only were they able to do something for his heart, but they were able to do a full repair. He will need more intervention in the future, but we will likely get to watch our son live a long and healthy life.

We are so very thankful that Max has recovered so well and so quickly without a lot of complications, but we have not forgotten all of the children and their families who have not experienced the same outcome. Do you think that perhaps God loves Max more than He loved Isaac or the other children who couldn't stay or those who are struggling to survive? Absolutely NOT! We do not think for a second that somehow God loves Max more or that he is somehow more special than the others who are struggling or those who couldn't stay. I don't pretend to understand God's ways or why He allows certain things to happen, but what I do know is that God loves all of these children. He died for all of them. His ways are far beyond my comprehension. There are things that I will never understand this side of heaven. I don't understand why some children get to stay and others don't, especially when they were so loved and wanted. But, what I do know is that His ways are perfect even when I do not understand. I believe that everyone was born for a purpose. Max has yet to fulfill his purpose. Isaac already fulfilled his. He accomplished so much in his short life. Isaac's days were written before he took his first breath and God allowed him to fulfill the purpose he was created for and then He said "No more, Isaac. No more fighting so hard to live. No more struggling for every breath. Your work on earth is finished. You fulfilled your purpose and you did it well! It is now time for you to rest and enjoy all that I have for you."

Your eyes saw my unformed body; all the days ordained for me were written in Your book before one of them came to be.

Psalm 139:16

While we long for the day when we will all be reunited, we are enjoying today and the blessings that God has given us. We are excited to see the plans that God has for our family, for Max, for Koah, Abi, and Ryder. While we celebrate how well Max is doing, we have not forgotten those who are struggling, those who are no longer physically here with us, and those children who are yet to find their family. While we long for our son, Isaac, we are not left without hope, but rather, we are hopeful for the future. We are so very thankful for the hope that we have of one day being reunited with him because of the gift of God's own son.

For God so loved the world that He gave his one and only son, that whoever believes in Him shall not perish but have eternal life. John 3:16

 

Bittersweet

I wasn't sure how well I would handle being back here at Boston Children's Hospital after losing Isaac here less than a year ago. Although this is the place where I experienced the very worst day of my life, it is still a place with so many wonderful memories. Most of the memories here were great ones. Walking through those doors almost feels like home. We lived here for so long and made so many great friends. The doctors, nurses, staff, other heart moms, and heart babies/children became like family. Many people here have made a special point to stop by and see us and hear the story of our adoption and how Isaac's legacy continues. To see all of the familiar faces has been great.

Almost everywhere I turn, there are so many memories. I think of all of the incredible heart warriors that I have met here. I can still picture Rita and Ethan walking the halls. I can picture Rita with her Doritos and her baby doll. I can picture Ethan at the Christmas Tree Lighting. I can picture Chloe in her KidKart being pushed through the halls. I can picture Davin, Kayla, Izaak, Pierce, Fletcher, Gideon in his cools socks, Vallerie with her adorable chubby cheeks, Evi in her purple Christmas dress, and so many more.  I can picture Logan's mommy pushing him through the halls in his stroller. I can picture Lola with her cute sunglasses. I can still remember their rooms. Out of that list, only three of them are still physically here on this earth with us. There has been such loss in this place, and yet, it does not feel like a place full of sadness, but rather a place where joy and hope for the future still remains.

My mind has often wandered back to my time here with Isaac, but I have been holding it together...until today. On today's walk with Max, we walked substantially further. We walked past room 7 where Isaac spent 10 days for kidney failure last year around this time. We walked past room 20 where Isaac was first admitted when he was transferred here. We walked past room 21 where we held our baby boy in our arms for the very last time while he was still alive. We walked past room 24 in the bay, where Isaac spent his first couple of weeks after his third open heart surgery. That's the room where just he and I celebrated my birthday together.
 

 

And yet, I still held it together. That is until we walked past room 29. I started to tell Max about how that is where we lived with his brother for so many months. And the overwhelming grief hit me like a punch to the stomach and I lost it. I so wish I could have just walked into that room with Max, and Isaac would have been there again. We had so many great memories with him in that room. We celebrated Isaac's first birthday there.
 

 

 

We celebrated Abi's 4th birthday there.

We celebrated Thanksgiving and Christmas there.

 

 

 

 

We had so many great times together as a family in that room. I can still picture Abi pushing up her sleeves and washing her hands so she could rub her brother's head.

 

 

And I can still picture Koah reading and talking to Isaac.

 

 

 

We have so many wonderful memories within those four walls. Late nights of snuggling. Lots of reading, singing, snuggling, laughing, and being a family. And now the memories are all that I have left to last me a lifetime.

 

In a strange way, I feel really close to Isaac here. I am so thankful that Isaac's life was valued here and he was given a chance at life. Even until his very last breath, they fought for him. He was loved, he was valued, and he was wanted. We shared so much in this place, and I am truly grateful for those memories, but there are days when the memories just don't feel like enough. And there are days when it feels so unfair that we couldn't keep him when he was so desperately loved and wanted. Today was one of those days, and yet, I know that he IS loved, he IS valued, and he IS wanted by the very God who breathed life into him and Who held him in His arms the second he left mine. And so, even though I don't understand why, I will choose to trust Him. And I will be thankful for all of the many wonderful memories that we made here with Isaac and that we are now making here with Max.

 

"For My thoughts are not your thoughts, Nor are your ways My ways," says the LORD. Isaiah 55:8

 

 

Easier and Harder

I have now handed over one of my son's for heart surgery five times, and I can say that each time, some things have become harder and some have become easier. I can remember the first time like it was yesterday. Isaac was only 11 days old when he had his first open heart surgery. I can still remember seeing him for the very first time. Nothing could have ever prepared me for what my little 4 pound baby boy would look like. It was so overwhelming. I can still remember seeing his little heart beating under his skin as his sternum was still open. I can remember all of the tubes and wires. I can still hear the sound of the water bubbling in the chest tube drainage canister. It was too much to take in and it made me feel physically sick.

 

 

The second time, Isaac was 5 months old. I was definitely a little more prepared. The third time, was with my 7 1/2 year old son, Koah, and I was even more prepared. The fourth time, was Isaac's third open heart surgery. It was one that was extremely risky and was thought that it could likely take his life, but it was also his only chance at life. I can remember us finally being allowed back into the CICU in Boston and seeing him for the first time. We were so relieved once we did. To us, he looked great! The tubes and wires were no longer overwhelming. We were able to look past them and see just how great he looked.

 

 

This past Thursday, I handed over my third son for his third open heart surgery. This was his first open heart surgery since we adopted him. I thought that after having done this four times before that it would somehow be easier. Unfortunately, this is the part of the journey that never gets easier. I was able to carry him downstairs in my arms and hold him until the medication that anesthesia gave him took affect. Laying him on the bed and walking away from him was so incredibly difficult. It is always in the back of my mind that this could be the last time I ever see them alive. But I just had to trust that God knows what He is doing and He has it all under control. After all, He loves him even more than I do.

 

 

What I wasn't prepared for was how agonizing the waiting would be. It always is, but the waiting has become harder and harder the more that I have had to do it. I think that maybe ignorance is bliss. Sometimes it is easier when you don't really know all that can go wrong. Having lived for almost 15 months in the CICU, I am all too aware of the things that can go wrong. I have seen too many worst case scenarios. It certainly didn't help that Max's surgery took several hours longer than anticipated. At times, the worry was so overwhelming. There were times when I honestly thought that I could never, EVER do this again. But God! He was right there giving me the strength when I thought that I couldn't possibly take it any more.

 

Finally, more than 10 agonizing hours after handing my baby boy over, we were allowed to see him. And, oh the incredible relief!!!! He looked AMAZING! You may think when looking at his pictures that it must have been hard for me to see him that way. But, honestly, that is the part that has become easier in this process. Each and every time has become tremendously easier and easier. When I saw him, I was overwhelmed with joy and relief. I could see past the tubes and wires and see a little boy who now had a lifetime ahead of him. I could finally dream of watching MY SON grow up. I didn't feel sadness or despair, but instead joy, thankfulness, and hope for the future. 

 

 

Maybe "I just don't think I could do it", is holding you back. I would have never thought that I could do it either. But you don't have to in your own strength. Yes, the journey is sometimes hard. But, I promise you, it is worth it. I am so thankful that God put us in the right place at the right time. I am so thankful that we put our fears aside and said "YES!". My son, Max, had no hope for a good future where he was. He had no hope of not only a good life, but of a life period. The surgery that he had done this week would have never been done in his country. I am just so overwhelmed with what God has done for Max, and I am so thankful that He has allowed me to be a part of His amazing plan for my son.

 

 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Finding Truth

Today was one of those days that I wasn’t sure I wanted to know the truth. If I could avoid hearing the truth, I could go on living like everything was fine. If I didn’t hear it, I could pretend like it didn’t exist. I think we all do this in some way or another, either consciously or subconsciously, with our children, in our marriage, in day to day life, with the problems in the world, with the overwhelming orphan crisis. Maybe hearing the truth about any of these problems makes us too sad, so we just avoid the truth.  Maybe we avoid hearing the truth because it makes it easier to pretend that the problems don’t exist. Maybe we avoid hearing the truth because then we would be forced to do something about it. Today was one of those days that I wasn’t sure I was prepared for the truth. I know we needed to know the truth about what was really going on in Max’s heart, but I wasn’t sure that I was going to be ready to accept the truth.

It was a very long day for all of us. Our day started with going down to the Cardiac MRI/ Cath Lab. After getting Max ready, I was able to hold him until the medication kicked in and he fell asleep.

 

 

There were no problems with the anesthesia and he was then taken for a Cardiac MRI. Once the MRI was complete, I was able to go back and see him and stay with him until his Heart Cath. He was intubated, paralyzed, and sedated, but I was able to hold his hand, rub his head, and talk to him for almost 2 hours.

 

Then they took him back for the cath……this was our moment of truth. The cath is what we have been waiting for since we brought him home. It was the cath that was to tell us what the prognosis was going to look like for Max.

I talked to our cardiologist here at BCH yesterday asking him what he thought we would likely find in the cath. He thought that we would very likely find very scrawny pulmonary arteries. This has been the fear all along. If we did, in fact, find that, the prognosis for Max would not be so great. If they would be able to do anything for him, it would be a very long process with MANY, MANY open heart surgeries in addition to the two that he has already had. Of course, this was not what any of us wanted, but we were prepared to face whatever we needed to for our son. We have already been down the road of tiny pulmonary arteries with Isaac. We were prepared to walk that path again if that is where God was leading us. God doesn’t always call us to the easy, but He does promise to be right there every step of the way. We have done difficult before, to say the least, and we were preparing our hearts for the difficult journey again, if that is where He was leading us.

Max did very well during the cath. He remained stable. They were able to coil some collaterals to help take some of the extra work off of his heart. They were able to extubate him successfully. There were 2 different times after the cath, while he was still in recovery, where he dropped his oxygen sats very low. The first time he dropped into the high 30s. There was some discussion as to whether or not it was accurate, but I was pretty sure that it was as his heart rate correlated and it had a nice pleth. A short time later, he dropped again, so we were now all convinced that the first time was also accurate, so they put a nasal cannula on just to give him a little extra help. Both times he was able to recover on his own, but it was thought that he needed a little extra oxygen to help him in the meantime. He was supposed to lay flat for 6 hours after his cath, but they broke the rules a little and let me hold him for awhile as it was the only way to keep him calm in recovery.

We are now back on the Cardiac floor, but not the ICU. Max seems to be feeling much better. I even got some smiles and giggles from him tonight.  These pictures were all taken when he was supposed to be laying still, but thankfully we were able to have some more cuddle time before bed.

 

Now for the truth……..are you ready for it? Our cardiologist here at BCH came into recovery to go over the combined results of the MRI and Cath. The results were the absolute best we could have prayed for…..Thank You God! Our cardiologist here said that he went into the cath thinking “doom and gloom”(his words). He was thinking that we were looking at worst case scenario, but it turns out that we were actually looking at the opposite. According to him, we caught all of the breaks. His pulmonary arteries are a decent size all the way through except for just the origin of the right pulmonary artery, which they will fix in the surgery anyway. His pulmonary pressure were low.  He thinks that it is likely that they will be able to do a full repair on Thursday. It doesn’t mean that he won’t need any more open heart surgeries. He will definitely need more, but most likely not for another 3-5 years or longer. BUT, the BEST news is that we can now have hope that we will likely get to watch our son grow up! We know that there is ALWAYS hope with God. We have seen Him do the imposible in the past. We know that He can and He does, but we are so thankful that at this time, He has chosen to give us the very best news we could have possibly hoped for. We were committed to love Max with all of our hearts for as long as God would allow us to keep him, but to think that it might actually be a lifetime is so incredibly overwhelming right now! I couldn’t have asked for more!

I am so thankful that God chose us to walk this road with Max. I am so thankful for the good news that we received today. I know that this journey is far from over. I know that the open heart surgery is still risky. We have been on this heart journey long enough and enough times to know that there are no guarantees. I know that we have a long road ahead of us, but to know that there is physical evidence of the hope that is in our hearts has been so emotionally overwhelming today.

Therefore my heart is glad, and my glory rejoices; 

My flesh also shall rest in hope. Psalm 16:8-10

The Last First

I have had this list in my head of all of the firsts that I wanted Max to experience before his open heart surgery. The last first on the list was taking him to the beach at Sanibel. I know that experiencing the beach is not vitally important in the grand scheme of life. I don't know why this list in my head was so important to me. Perhaps these firsts are more important to me because there were many firsts that I never got to do with Isaac. It looked as if this was a first we weren't going to be able to accomplish for Max before his surgery. Then Boston called to say that they were going to need to postpone Max's surgery for a week. This meant that we would all have that week off together, as Max's surgery was originally scheduled during my husband's Spring Break from work. The rescheduling gave us the perfect opportunity to take the children to Sanibel/Captiva Island for a few days and check off that last first from the list.

Living in Florida, we have access to many beaches, but Sanibel and Captiva Islands are really special to me for many reasons. I have been going there since I was a child, and I have so many wonderful memories there growing up, and now as a parent. Probably the biggest reason that it is so special to me is that all of my children have been there, including Isaac the summer before he was born.

I had always dreamed of bringing Isaac back to the beach once he was born, but that was a first that he never got to experience. In some ways, it is hard being back there. I grieve for the son that is no longer physically with us, but I am also so thankful for these moments with our other incredible children.

All of the children really enjoyed their time at the beach. Koah loved chasing observing the birds and finding shells and sea creatures.

Abi loved playing in the sand and looking for shells.

But there was something really special about watching our little boys experiencing the beach for the very first time.

 

Ryder absolutely loved the sand. Unfortunately, he loved it too much and wanted to sit and eat all of it.

Max loved everything about the beach. He loved the water, the sand, the shells, and walking up and down the beach.

One of our traditions is to always take pictures on the beach. I couldn't help but think back to the pictures we took with Isaac at the beach the summer before he was born. That was the last time that we ever brought him to the beach. I also think back to one of our friends that we met in Boston, a little boy named Ethan. He was one of the most courageous people I have ever met and he had such a love for life. There is a picture of Ethan and his mommy that I absolutely love. It was taken on the very same beach where we took our pictures. But it was the very last time that Ethan was to be at the beach, too, as he is now in heaven with Isaac. I can't keep my mind from wandering and hoping and praying that this won't be both the first and the last time that we have Max at the beach. I really try not to dwell on it. I know that God is in control and I have faith that He will work all things together for good, but at the same time, we enjoy and cherish every moment as if it were the last.

My heart is overwhelmed, and I am so thankful that God chose to trust us with one of his special, special gifts. We will love and cherish every moment that God allows us to spend with our INCREDIBLE son, Max. We love you Max, and we look forward to many more beach trips with you and experiencing many more firsts with you. Our hope is in the very Creator of the universe who knew you and loved you before time began. He has never left you, nor will He ever. 

Be of good courage, and He shall strengthen your heart, 

all you that hope in the LORD. 

Psalm 31:24