When I had my first daughter, Eliana, we were told that she would have down syndrome. Absolutely. The doctors felt so strongly that the genetic testing was a kind of formality so we would believe their diagnosis. We didn't have any testing done while I was pregnant because we believe life is sacred and it wasn't going to change our minds about how much we would love her. So we both nodded, but were excited to celebrate and welcome her into the world when "Dr. Downer" (names have been changed to protect the guilty) came in to tell us how horrible it is to have a child with down syndrome, and what challenges we would have with her from now through her adulthood. After hours with Dr. Downer, many other geneticists, physical therapists, residents and nurses in training came to see the down syndrome baby and talk with the parents. Our hospital experience was so horrible we couldn't wait to get out of there. We had a wonderful, yet sober, first few weeks with our sweet girl while we waited for tests to come back.
The results? Negative. No down syndrome. She has a duplication of chromosome 7, and come to find out so does my amazing husband! We call it super 7 now, because Eliana is so stinking smart! She has had her own challenges with needing surgeries and going to the hospital, and each of those times where very difficult as a parent to go through. I tell her story to some friends and it is hard for them to imagine how difficult it was for us as Eliana had surgery on her fingers and tonsils, and then some rough ER visits. I don't want to downplay that these were difficult, and it is always hard to watch your child suffer, and surgeries on 6 month olds are scary, and surgeries on almost 2 year olds are so hard as you watch them express their suffering even more. The tears I shed when she was admitted for a scary vertigo attack, and then when we were discharged and what does my little girl do first thing the next day? Stick a hanger down her throat! These were SO hard. These were huge steps in preparing us as parents, and preparing my daughter in empathy for what was ahead for our family.
When I found out I was pregnant with Jace, I was mostly concerned with our bonkers genetics tricking the doctors again, because I never wanted to encounter Dr. Downer and his entourage again! My midwife suggested a downs screen that is very accurate to just see if we could avoid the same birth situation.
I went in at 12 weeks, and listened to them talk about the test, how they measure the back of the baby's neck and do a blood test to see the baby's chances of having downs. I layed on the sonogram table and looked at the screen. My stomach dropped as I saw the sonographer's face and demeanor go from cheerful and chatty to downcast and quiet. I had seen the pictures of what they were looking for. I could tell my baby was going to fail the test. The measurement on the back of the neck looked big even to my untrained eye. That was when I asked timidly "does it look big to you?"
The doctor came and said that he was going to cancel the test. The baby had a huge cyst on the back of the neck that was probably not related to down syndrome necessarily, but it could be another problem. Suddenly I was just wishing for the experience of having a live baby, because my odds of miscarriage were greatly increased. I have had a miscarriage before at 13 weeks, and was so scared it might happen again.
Maternal fetal had me back every 2 weeks to monitor my baby, and we praised God as the cyst shrank. But the same day we found out our baby was a boy, we also discovered that he had something wrong with his heart. I just thought for sure it wasn't so bad, it couldn't be. We had the wrong diagnosis for my daughter, surely they were wrong. As we prayed and found out more, that our son had a form of hypoplastic left heart syndrome, I had to think through a lot. Am I in denial, or do I just really believe that God will heal him? Every echocardiogram showed new challenges, and I didn't know if I could try for a vbac, or if I would have to do another csection, if I could or couldn't hold him, feed him, if they would wisk him into open heart surgery... The list of unknowns kept getting bigger and bigger. Then I knew from my first birthing experience that there are always variables that you don't even know about in order to add them to your list of unknowns, even with a healthy baby.
We decided to give him the name Jace Levin after much research in names and their meanings. We wanted a name that was original with an appropriate meaning, and I think we did well! (Except apparently Jace is fairly popular now from duck dynasty...) Jace is a form of Jason and means healer in Greek, and Levin is a Hebrew name that means heart. Jace Levin, healer of the heart. We wanted so badly for God to miraculously heal Jace's heart, but (spoiler alert) it looks like God wants us to walk through this one.
Ok, so if you are like me, you have no idea why this looks crazy! I have said multiple times that if I went back to middle school now I could ace that heart test! So, the two big tubes going into what is labled RV (right ventricle) are his pulminary artery and aorta, and they shouldn't be going straight, but they should twist aroud each other. And instead of going into one ventricle, they should go into a right and left ventricle. In this picture you can see the left ventricle is small and open to the right, and there are 3 chambers instead of 4. What this means is that Jace was born with his heart mixing the oxygenated blood with the non-oxygenated blood. All through his body his blood is mixed, so he can look a little more blue at times. To fix this, his cardiologists were hoping that he would need just 2 surgeries, which is fortunate, most hypoplastic left heart syndrome kids need to have 3. They thought his first surgery would be at 6 months, then his last would be at 2-3 years old, and they would work on getting his heart to function by pumping blood to the body, and redirecting the blood to basically make a pit stop by the lungs to pick up oxygen on its way back to the heart. The biggest issue they anticipated for Jace was how well his heart would be able to pump blood to his lungs appropriately without damaging them by getting too much blood flow to his lungs. This is just the story from the womb, so this was all we knew at this point.
This is a blog about a strong little boy, who still has a long road ahead of him. My prayer is that through his story something would be healed in your heart, that you might be able to see miracles through adversity. That when you go through a deep dark scary valley, you could look beyond yourself and see that God uses everything we go through for HIS purpose, and we can still trust our amazingly good God.
The doctor came and said that he was going to cancel the test. The baby had a huge cyst on the back of the neck that was probably not related to down syndrome necessarily, but it could be another problem. Suddenly I was just wishing for the experience of having a live baby, because my odds of miscarriage were greatly increased. I have had a miscarriage before at 13 weeks, and was so scared it might happen again.
Maternal fetal had me back every 2 weeks to monitor my baby, and we praised God as the cyst shrank. But the same day we found out our baby was a boy, we also discovered that he had something wrong with his heart. I just thought for sure it wasn't so bad, it couldn't be. We had the wrong diagnosis for my daughter, surely they were wrong. As we prayed and found out more, that our son had a form of hypoplastic left heart syndrome, I had to think through a lot. Am I in denial, or do I just really believe that God will heal him? Every echocardiogram showed new challenges, and I didn't know if I could try for a vbac, or if I would have to do another csection, if I could or couldn't hold him, feed him, if they would wisk him into open heart surgery... The list of unknowns kept getting bigger and bigger. Then I knew from my first birthing experience that there are always variables that you don't even know about in order to add them to your list of unknowns, even with a healthy baby.
We decided to give him the name Jace Levin after much research in names and their meanings. We wanted a name that was original with an appropriate meaning, and I think we did well! (Except apparently Jace is fairly popular now from duck dynasty...) Jace is a form of Jason and means healer in Greek, and Levin is a Hebrew name that means heart. Jace Levin, healer of the heart. We wanted so badly for God to miraculously heal Jace's heart, but (spoiler alert) it looks like God wants us to walk through this one.
Jace's heart
Ok, so if you are like me, you have no idea why this looks crazy! I have said multiple times that if I went back to middle school now I could ace that heart test! So, the two big tubes going into what is labled RV (right ventricle) are his pulminary artery and aorta, and they shouldn't be going straight, but they should twist aroud each other. And instead of going into one ventricle, they should go into a right and left ventricle. In this picture you can see the left ventricle is small and open to the right, and there are 3 chambers instead of 4. What this means is that Jace was born with his heart mixing the oxygenated blood with the non-oxygenated blood. All through his body his blood is mixed, so he can look a little more blue at times. To fix this, his cardiologists were hoping that he would need just 2 surgeries, which is fortunate, most hypoplastic left heart syndrome kids need to have 3. They thought his first surgery would be at 6 months, then his last would be at 2-3 years old, and they would work on getting his heart to function by pumping blood to the body, and redirecting the blood to basically make a pit stop by the lungs to pick up oxygen on its way back to the heart. The biggest issue they anticipated for Jace was how well his heart would be able to pump blood to his lungs appropriately without damaging them by getting too much blood flow to his lungs. This is just the story from the womb, so this was all we knew at this point.
This is a blog about a strong little boy, who still has a long road ahead of him. My prayer is that through his story something would be healed in your heart, that you might be able to see miracles through adversity. That when you go through a deep dark scary valley, you could look beyond yourself and see that God uses everything we go through for HIS purpose, and we can still trust our amazingly good God.
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