She is Worth It

Quite honestly, the only thing that I hate about adoption is fundraising. I absolutely hate begging people for money. I hate it with a passion. It makes me cringe just thinking about it. And, sometimes, when I should be asking for help, I sit here quietly instead, worrying about what other people are going to think when I am constantly asking for money. And then, I received a letter from our daughter in China, and I realized that this isn't about me...it's about her. I knew right then that I needed to push my pride aside, and do what I needed to do to bring her home, even if that includes begging for money.  

       

Dear loving Baba and Mama, Hello!

Because I cannot write, my ayi at the orphanage is helping me to write this letter. I received the photo album and gift that you sent to me. I was very joyous. The red skirt is beautiful. I like it very much because my favorite color is red. I also like the necklace. Thank you baba and mama. I love you. 

I like to eat strawberries. Strawberries are also red. The sweet and sour taste is very good. I like to taste sweet and sour foods. I also like to eat lollipops. I liked eating the cookies that you sent. They tasted good.

I like the keyboard and piano, and I can play some simple songs. When I arrive in America I would like to play you a song, I hope you like it. I like singing, and I can sing lots of songs. I also like painting, building (with bricks/toys) and playing games with my friends. 

Baba and Mama, Didi (younger brothers), Meimei (younger sister), loving parents, grandparents, great grand parents, aunts and uncles, I miss you very much. I hope you can come to China soon to pick me up. I wish to have life with you. I look forward to being with you. I love you.

Love your "Her Name"

This is a plea from our daughter to please get to her...to please bring her home quickly so that she can have a life with us. She is now 13 years old, and what that means for her is that on the day she turns 14, she will age out of the orphanage system. She will no longer have a home. She will no longer have a chance to have a family. All hope of belonging will be lost for her forever. 

You see, this isn't about us needing more children. This isn't about us wanting to grow our family. This is about us answering a call. We, quite honestly, felt content with our children. We have five beautiful children, with four of them at home with us. Our days are filled with work, play, school, therapy, doctor's appointments, and a whole lot of laughter. There's always plenty to do, and we were content in just living our lives. BUT God....He started placing on our hearts the children who were still out there who desperately needed to know the love of a family. They needed to know the love of their Heavenly Father. They needed to know their worth. They needed to know how special they are. And the only way for them to know is for His people to be His hands and His feet. He places the lonely in families. And so, our hearts were broken once again. We knew that we needed to listen to His calling and open up our hearts again. And, that is when He filled our hearts with such an incredible love for Elliette. He gave us the desire to bring her into our family and make her our daughter forever, no matter the cost. 

But, to our human hearts, the cost is overwhelming. It feels like a mountain at times, standing between us and our daughter. We know that God called us to her. And we know that everything is possible with Him, but in our human minds, there are times when it seems impossible. Yes, we would love to have time to just save up for an adoption, but she doesn't have that time. The 147 million orphans around the world tonight don't have that kind of time. The children who are dying every day simply because they are orphans, and are denied adequate food and medical care, don't have that kind of time. So, then, what is the solution? I know that not everyone is called to adopt, but we can all do something. The solution is for us to all work together....those of us who can and who are being called to adopt, to open up our hearts to His children....and for those of us who aren't being called to adopt, to do what we can to help another family open up their hearts to one of His children.

Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world. James 1:27

So, where does that leave us? We are in desperate need of funds to answer God's call on our lives of bringing His daughter into our family. We will not get anything financially out of this. We do not qualify for Medicaid or SSI for any of our children. We do not qualify for any type of assistance, whatsoever. We have already incurred huge medical bills for one of our two boys that we brought home from Ukraine in October. He had open heart surgery in March, and he will need more in the future. We have paid countless co pays in the last year for our children, and we are willingly taking on the same with our daughter who has Cerebral Palsy. The adoption tax credit doesn't make any difference in our tax return. We have nothing to gain financially through adoption, but we have everything to gain by following God's call on our lives, and our daughter has everything to gain by finally having a place to belong. 

So far, we have personally written checks for several thousand dollars, but that is all that we personally have left. There are so many things that we could have spent that money on, but there is nothing of greater value than a child's life. I know that compared to the amount of funds that we need to bring our daughter home, several thousand dollars doesn't seem like much, but to us that is a huge amount of money.

So, now, I will push my pride aside, and shamelessly beg for money....not for me, but for our daughter who has waited so long for her chance for a family. If you can, would you please consider donating using the top right donate button on our blog? We need your help. We can't do it alone, but if we all work together, I know that we can make our daughter's dream of a family a reality. Every dollar is important!

I leave you with a video message to us from our daughter on her birthday...

Elliette's Birthday Message

It is a little hard to hear her, but this is what she said...

Daddy and Mommy, I love you!!

I love the gifts you mailed to me!

I hope you can pick me up as soon as possible!!

We love you with all of our hearts, too, and we are working as hard as we can to get to you as soon as possible, our sweet girl. At times, the journey to you may seem overwhelming, but we know that you are WORTH IT! You have always been worth it!

Happy 13th Birthday

Our daughter has been living in the same orphanage now for over 10 years, and has watched countless children leave her orphanage to join their forever families. For 10 years, she has wondered why they never chose her. For 10 years, she has probably wondered why she wasn't good enough. The picture that was in her file was from when she was about 7 years old. You can see that her face was still filled with so much joy and hope for the future even though she had been waiting for a family of her own for over 4 years. 

But, something happened in the years since that adorable picture was taken. She became older, and wiser, and yet, she still seemed to be passed over time and time again. I can only imagine how that made her feel. I can not imagine the pain that she endured year after year, desperately wanting a family, and yet never being chosen. I was able to see some updated pictures of her several months ago. I have never shared them because they broke my heart. The years of rejection seemed to show on her face. I could see how absolutely beautiful she was, but the hope and joy just wasn't there anymore. Perhaps she had resigned herself to the fact that she would never know what it meant to belong.

But, last Monday, was her 13th birthday. I wonder if she even knew it was her birthday. Why would she? It was likely just a day like any other day for all of these years. I doubt that she had been celebrated in the 10 years that she lived in the orphanage. But, this year, her birthday was different. This year, her birthday was filled with hope for the future. This year, she knew she had a family coming for her. This year she had a family who planned a party for her even though they were on the other side of the world. This year, she was celebrated. This year will be the last birthday she will ever celebrate without her family by her side. This year, joy and hope for the future has returned to her face.

Happy 13th Birthday, our sweet girl! We love you SO MUCH!. I pray that our love will hold your heart until the day that we can hold you in our arms. You are beautiful. You are loved. You are special. You are wanted. You belong. You are chosen. And, you are WORTH it!

The Journey Continues

      The boys have now been home almost seven months. They have adjusted well and they are thriving. Every day I am amazed at how much joy they have brought to our family. When we first brought the boys home, I remember reading about many issues that people were facing after adopting an older child, and I remember thinking how thankful I was that we had adopted our boys at such a young age. The boys were adjusting well. The bonding was easy. We loved our boys and our boys loved us. I remember saying that I would NEVER, ever adopt a school-aged child.

     Apparently God found great humor in the plans I had for my life. Shortly after saying that, he started breaking my heart for the older children....the children who were least likely to be chosen. After all, it is pretty easy to fall in love with a cute baby or toddler. But, who was going to love the older children...those who so desperately wanted a family? The ones who have been waiting for years? Those that have been passed over time and time again? God began filling my heart with love for these children. In my head, these thoughts of adopting an older child terrified me, but in my heart, I told God that if this is what He wanted us to do, then I would do it.

     For months we prayed. Was this what He was calling us to do? After all, we were doing our part in the orphan crisis, right? We had just brought home our two boys. Certainly there were other families who could step up. We can't save them all, right? But I didn't feel like it was enough. There were still children out there without families. We could love one more, couldn't we?

     This was something we could not get out of our minds. Our hearts were broken for these children. There were a few girls who really broke our hearts. We had been praying for direction for months. We had a list of girls that really had our hearts. We were torn. How do you choose a child? I did the only thing I knew to do, and that was to pray. And God answered. I was honestly surprised by the girl that God put in my heart. She was on our list, but she is not the girl that I would have chosen on my own. She was the oldest child on our list. She didn't have much money in her fund on Reece's Rainbow, and there were no reduced fees or grants for her. That would be a huge risk for us since we didn't have the funds just sitting around. But, as soon as I requested her file to look at, God started working in my heart. He filled my heart with such an incredible love for her. I can't even describe it. She was the one we felt needed us the most and the one we thought would be least likely to be chosen because of her age and lack of funds. Even before seeing her file, I knew she was the one we were meant to adopt. I was ready to commit to her then. At that point there was nothing in her file that could have made me change my mind or make me love her less. We waited 3 agonizing days for her file. During that time, we talked about her often. We imagined her in our family. I would break down in tears wondering if she knew just how special she was. I wondered if she had ever been told how beautiful she was. I wondered if anyone ever told her how proud they were of her. Thoughts of her consumed my mind. We knew we had to bring her home, and we knew that many people would probably think we were crazy. In fact, there was a time not so far in the past that I would have thought the same thing. But, here we are, starting the process to adopt again, just 6 months after bringing our boys home, but this time there won't be any cute babies for us, but there will be a super special older girl. By the time we bring her home, she will be thirteen years old. Yes, in my head, that is pretty scary, but in my heart, I am filled with great peace knowing it is what we have been called to do. We love her already and we are SO, SO EXCITED to bring her home!

     Here is our beautiful daughter...our sweet Elliette. Unfortunately, her picture is about 5 years old. She desperately wants a family and in her country she will age out next year, meaning that she would be too old to ever be adopted. Because she was born with Cerebral Palsy, she would be left in a culture without a future. For years she has waited for a family. She has said with tears in her eyes how much she wants a mommy and a daddy. Well, hold on sweet girl, God has answered your cry and we are working hard to bring you home!

 I love the Lord, for He heard my voice; He heard my cry for mercy. Because He turned His ear to me, I will call on Him as long as I live. Psalm 116:1-2

     If you feel led, we will be raising funds for our adoption of Elliette. You can click on the paypal link at the top right of the blog. We can't wait to bring her home, but we know that we cannot do it without God's help and your help. Thank you for helping make Elliette on less orphan!

One Year Closer

One year ago today began the hardest day of our entire lives. Just the week before, we were admitted to Boston Children's Hospital after a routine procedure and bloodwork. We thought that we would just be there for a few days for a quick tune up. We always went to the Cardiac ICU due to Isaac's complexity and because he was on a ventilator.

 Isaac in his Kid Kart about to leave home for his last outpatient appointment

About 2 days into the admission, I noticed that Isaac's abdomen was suddenly becoming larger and his feeds were backing up (which they never did). After some tests were run, the doctors decided that Isaac needed an emergency exploratory abdominal surgery. Without the surgery, they believed that Isaac would die in a matter of hours, but, neither the surgeon or cardiologist thought that he would survive the surgery. Many "typical" children did not survive this type of surgery, and Isaac was extremely complex. I can still remember them taking him to the OR as I begged them to take care of my baby. I could not even imagine losing my baby boy during surgery. I have to say that this was the most difficult wait of any surgery. The odds were so stacked against him and it was extremely likely that he would not survive. I did the only thing that I knew to do, and that was to rely on God and pray like I had never prayed before. When the surgeon came out after Isaac's surgery, and Isaac was still alive, I cannot even begin to tell you the immense relief and joy that I felt at that moment. They had found that Isaac's intestines had twisted, and they were able to repair it. Due to swelling, it was common procedure to leave the abdomen open after this type of surgery with the intestines on the outside of the body in a mesh type of pouch and then covered with bandages. The surgeon explained that he was still not out of the woods and that there would be more surgeries involved, but I was just so relieved and thankful that he was alive.

That night, as I was trying to get a little sleep in his room, I could hear one of the senior fellows, Henry in the room, and I knew something wasn't right. I immediately got up to find that Isaac's labs were showing that his liver was shutting down which was causing him to have bleeding issues. He was needing constant transfusions of all types due to this. This was a major blow having another organ failure thrown into the mix, but the hope was that the liver could potentially just be in shock due to the surgery, and we would support Isaac the best that we could and wait it out. During the next few days, Isaac was needing increased support. On top of his liver not working, his kidneys were also not working. Instead of improving, he was continuing to get worse. He looked very rough. If you ever hear a cardiac mom who has been through a few open heart surgeries say that their child looks rough, that is a very bad thing. I knew that things were looking very, very, very bad. He was the most swollen he had ever been. His skin was breaking down everywhere. His color had changed. He was yellow, and red, and purple. He was in such rough shape. His body looked 100x worse than it ever had. But even in the midst of this, I continued to have faith that even this was not too hard for God.

 A couple days in, they brought in a regular bed to move Isaac into instead of his crib. Although I was happy to be able to lay down with Isaac and snuggle with him, I knew what this meant. After having spent so much time in the Cardiac ICU with Isaac in the past, I knew they were doing this because they were convinced that he was dying. And spend time with him is what I did. We snuggled together. I slept in his bed. We read stories. I helped take care of him, including helping change the bandages on his intestines. We listened to music. I sang to him. I prayed with him. I didn't leave his room. I didn't shower, eat, or drink. I was probably the greasiest and stinkiest parent ever, having not showered for 5 days, but I didn't care. It was just too risky to leave him for any amount of time. I wanted to spend every second with him. 

Each day he continued to get worse, and it was finally time that they decided they needed to wash out his abdomen and take a look at his intestines to see what part them were still alive and that they could save. If there were parts that were dead, they would have to cut those parts out. Because of his liver not working, this was extremely risky. It was very likely that this could kill him, but once again, it had to be done. They were going to do this at bedside in his room with the surgeon and Cardiac ICU staff. I cannot tell you how hard it was to walk away from him and hoping that this was not the last time that I saw him alive. I just couldn't leave him. Finally, one of Isaac's team nurses, Stephanie, walked us out. She assured me that she loved Isaac and would do everything she could to look out for him.

It wasn't too long before Stephanie came back out to get us, and thus began the worst 24 hours of our lives.Once in the room, the surgeon informed us that all of his intestines were dead. There was nothing that they could save. I even asked about a intestine transplant, but his intestines were so bad that there was not a way to take them out while keeping him alive. There was now no more that they could do for him. They desperately wanted to help him, but they couldn't. I cannot tell you how hard that is to hear. As a parent, you want to do everything you can for your child, but there was nothing more that I could do or that the doctors could do. It was all too much to grasp.

How in the world were we going to tell Abi and Koah? They loved their brother so much!

  

 

I didn't think I could tell them, nor did I want to leave Isaac's side for fear of something happening to him while I was gone. Jason and Kate (Childlife Specialist), along with my mom, took the children to one of the playrooms so they could explain to Abi and Koah what was going on. It did not go well at all. Koah was having a very rough time, so they came and got me. When I walked into that playroom, the image that I saw of Koah is forever burned into my memory. He was holding out his arm and wailing Isaac, Isaac, over and over again. He was taking it so hard. He said he was the worst brother ever because Isaac had saved his life, but he couldn't save Isaac's. He just wanted to hold Isaac again and read to him.

Although we knew that the circumstances looked terrible, I continued to have faith that God could still fix this. So we continued to pray. Even though, medically speaking it was impossible for him to survive, I knew that for me personally, I could not withdraw life support. I knew that it was something that I personally could not live with, and thankfully, no one even mentioned that as something that I should consider (I am not saying it is wrong, it is just something that I know that I could not emotionally handle). We did choose not to do chest compressions due to his open abdomen, but we chose to still use code drugs if needed. I know this may not make any sense to some of you, but it was what made sense to us. I needed to feel like I gave Isaac every chance at life, however impossible it may have seemed. I did not want him to suffer, and he didn't, but at the same time, I needed to know that I gave him every chance possible. I couldn't handle one more "what if?".

Once all of the family that was coming that night flew in, they let me hold Isaac for the first time since his surgery. We all spent time with Isaac that night together in his room. After the rest of the family left, Koah stayed behind with Jason and I. They let Koah hold him and also read to him like he wanted. As Koah left for the night, I can still remember him turning around as I was holding Isaac and saying "Goodnight Isaac. I love you. See you tomorrow" as he said to him everynight.

About three hours later, as I was holding Isaac in my arms in his bed, and Jason was standing right beside us, Isaac's blood pressure and heart rate started dipping. The cardiac team came in and started administering medications. Up until this point, I was still praying and believing God for a miracle, but at this exact moment, I felt in my heart that I was about to lose my son. I kept telling them that I wasn't ready yet. We didn't expect this to happen so soon. How can you ever be ready to lose your son? While they continued to push medications, I pulled Isaac close to me and started talking in his ear. I told him how much I loved him. I told him how proud I was of him. I told him about heaven and how beautiful it was. I told him that God was going to take care of him now, but that one day I would see him again. That time with him is so precious to me. Although there was so much going on in his room, it was as if it was just the two of us. I can still feel Dr. Allan put her hand on my shoulder to let me know his heart had stopped. We had lost our baby boy to heaven. I just held him as Jason and I cried together.

They told me that I could hold him for as long as I wanted. They probably didn't realize that I would have held him forever. I held him all night long. The next morning, we had many visitors. I cannot tell you how incredibly supportive Boston Children's was. They had become our second family. They not only loved Isaac, but they sincerely cared about us. I didn't find this out until later, but once they knew that there was nothing left they could do for Isaac, they had a meeting with many people to try to come up with a plan on what they could do to support us during this time. There were so many people there who loved our son. And support us they did. They allowed me to continue to hold him during the morning. I held him for 12 straight hours while sitting in his bed. Then they let me bathe him and get him dressed. I was finally able to hold and carry my son for the first time ever without being attached to anything. I had dreamed of that day.....I just thought it would be while he was alive. 

 

The chaplain arranged a special service downstairs for us. I carried my son in my arms downstairs and Jason and I were able to hold him during the beautiful service that Chaplain Michele had planned for us. After the service, the family left the room so that just Jason and I could spend some more time with Isaac before having to hand him over to the morgue. 

I asked for a rocking chair, and our wonderful nurse, Mike, was able to find one for me and bring it into the room. I rocked him, and sang to him, and danced with him. There were so many things I told him. I knew that he wasn't really there, that it was just his body, but that was all that I had left of him. I remember saying to him "If I miss you this much already, and you're still in my arms, how am I going to do this"? As heartbreaking as it was, those are moments that I will treasure forever. And as weird or different as it may seem, I needed those moments to help me through my grief. I am so thankful that they gave me that time with him.

The time finally came to hand my baby over to the morgue. I knew it was just his body, but there was something that just felt so wrong about leaving him there. While Isaac was in the hospital, Jason and I felt strongly that we should have someone with Isaac at all times, as much as possible. We slept in his room. We took full responsibility for his care, so handing him over (even if it was just his body), just felt so wrong.

It has now been one year since we lost Isaac to heaven, and the pain is still there. We will always miss him. He is such a huge part of our family and we are who we are today because we were given the privilege of loving him. 

One of the hardest things for me in the beginning, besides having to learn to live without my son, was I felt that I had in some way let Isaac down, and let me tell you, that is the absolute worst feeling in the world. I was his Mommy, his full time caregiver. I was supposed to protect him, and I tried with every fiber of my being. I struggled with thinking that I could have done something to prevent his death. I started second guessing every medical decision ever made. I remember telling Isaac over and over again "I'm so sorry, Isaaac....I'm so sorry". My job, as his mom, was to protect him. I wanted nothing more than to watch him grow up. I took the responsibility of being his mom very seriously.  I took complete charge of his care and took care of him 24 hours a day. I managed his home vent, suctioning, meds every 2-4 hours (about 30 meds a day and I could have told you his dosage and frequency by heart), feeds, trach and g-j tube care, twice a day weights, keeping track of his ins and outs (which included weighing his diapers). I didn't want anyone else to do it, because I felt like I knew him more than anyone else and I wanted the full responsibility of his care. I knew what his norms were. I knew what  meds did and didn't work for him. I knew what his labs should be. I knew what a good blood gas and good Chem 10 (or CMP) were for him. I knew when to call the doctor. I was overly protective of him because I needed to be. Whenever he went to the hospital for any reason, even just an outpatient appointment, I had him put on reverse contact precautions to protect him. I was fully involved in all decisions with his doctors. I was extremely involved in his care and in the decision making. So, when I lost him, I felt that I was to blame. I second guessed every decision I had made for him. I should have done this.....I should have said no to that.......what if we had done this........I should have pushed to have this sooner.......I should have known........and the list could go on and on. No matter how many times one of the doctors would tell me that there was nothing I could have done, it didn't matter. I remember Dr. Allan telling me that when Isaac was discharged, that they started counting down the hours until he would be back, but then the hours turned to days, the days to weeks, and the weeks to months. She said that I had done a better job taking care of him than they had (obviously it was God and them that had brought him to the point where he could be discharged), but I still felt responsible for losing him. I had let my son down. I failed at my duty to keep him alive. I wanted nothing more than to watch him grow up, but I had somehow let him down. That was the absolute most difficult part of the grieving process for me. And to be completely honest, I still have moments like that were the "what ifs" come in. I have to believe that Isaac's days were written long before he ever took his first breath. I have to believe that God knew exactly when He was going to call Isaac back home, and that is quite honestly the only thing that gives me peace when the "what ifs" come. 

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

It has now been a year since I held Isaac for the last time while he was still alive here on this earth. So much has happened in that year. It has been one of the hardest years, but it has also been one of the most beautiful years. There isn't a day that goes by that I don't miss my baby boy. But there also isn't a day that goes by when I am not so thankful for the time that we had with him no matter how short it may have been and for the incredible lessons that he taught us about love, life, value, worth, strength, and courage. I am so blessed to have been his mommy, and although his life on this earth may be over, I am so thankful that his legacy continues on.

And when I stop to think about it, although last year was the absolute worst day of our lives, it was the most beautiful day in our son's life.

We love you forever, Isaac. We are one year closer to being reunited with you.

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