Disclaimer: I didn't proof read this post. I am going to go play with my girls instead. :-)
The Background:
I am firing up the blog again for an unexpected reason. As most of you know, we are expecting a sweet baby boy. Our son's name is Tyson Hugh Hooper and he is currently 29 weeks in utero. Most parents have only seen 2 ultrasounds of there little one at this point, but we are will acquainted with Ty. At our 20 week anatomy scan the ultrasound tech declared that there were "a couple views of the heart" that she couldn't get. I was a little concerned because she had spent so much of our time in the ultrasound room looking only at his heart, but this seemed to explain it. At our follow up appointment a couple weeks later I was hoping for a quick ultrasound and a healthy check up from my OB. When I hopped up on the table for the ultrasound the tech told me there were just a couple of images she needed of the heart and that it would only take a few minutes. I asked if my OB would get the scan results right away since I was headed there next. She assured me that she would fax them right up and so we could review them at my OB appointment. This put my mind at ease - no waiting to make sure everything checked out. Unfortunately, that is not exactly how things went down. After our "quick" ultrasound turned into a near hour long experience in which the tech barely spoke and took picture after pictures and measurement after measurement of our son's heart, my heart sunk. I just knew. I knew in my heart that his was not okay. My fear was confirmed when I arrived at the OBs office and was told that they wanted the MFM to look at my scans before the released the report and I wouldn't know anything for a couple of days. I was already crumbling, but trying so hard to have faith and keep it together. The reports came back way faster than expected and that afternoon the OB called to say we needed to come back for an echocardiogram with the MFM because they saw some things they didn't like on my scans. Still, it was stated that it might be "positional." We had to wait almost 2 more weeks for this appointment. At the echo it was confirmed that our baby's heart was a hot mess. He had 2 holes near the center of his heart, an aorta that was too small, something else that was too big, and a valve that they couldn't tell whether or not it was correct or not. We were in a daze, but faced with this and told that this type of heart defect is often found in conjunction with Downs Syndrome, we decided to have an amniocentesis. Our results wouldn't impact our decisions regarding the care of our baby so much, but Chris and I would be able to prepare if we knew ahead of time. This was just a few days before Christmas, so the wait for the results and the follow up with our team at Vanderbilt were a ways away. We had to celebrate Christmas and New Years not knowing exactly what our baby's diagnosis was. On January 2 our MFM called with the amnio results. No Downs Syndrome, but there was a chromosomal abnormality. Some Y chromosomes were missing and he was mosaic for this. We held it together for a while, praying and trying hard to trust God and his plan. After all, He designed this baby and chose us to be his parents. Google scared the (insert bad word of choice) out of both of us with worst case scenarios and suddenly the complex heart defect went to the back burner while we poured over studies and information (or lack thereof) about his chromosomal abnormalities. After a lot (and I mean A LOT) of praying and waiting, last Monday we finally got to meet with most of our medical team at Vanderbilt. We had a thorough ultrasound, met with an MFM about the findings on the ultrasound, met with a genetic counselor about the chromosomal abnormality, met with a social worker about dealing with all of this and ways to get help if needed, and then finally met with our cardiologist for another echo and an official diagnosis.
The Chromosomes:
Praise Jesus, the chromosomal abnormality does not appear to be life altering for our little guy. According to our genetic counselor, she said he should look and act like a boy. (We feared he might be ambiguous.) She had researched and only found 11 other cases of his specific genetic mutation, some of which had been terminated. Her evaluation of the situation was, that if we hadn't been poking around his chromosomes for an answer to the heart issue, we never would have known he had a thing different with his genes. He is, indeed, missing some Y chromosomes from some cells, but the cells that do have Y are mutated and include an extra portion of the male-making instructions. God is amazing. In my mind, this makes up for the missing Ys. Yes, I admit, we have a 3D pictures of our little boy's man parts on the fridge. :-) He is, indeed, and boy. She can't seem to find anything that would indicate any other issues for him other than the possibility of being sterile. We'll have some more genetic testing done when he is older so that he will be aware that he carries a mutated Y. He will need to know if he might pass it on to his children or if he can even have children. In the mean time, however, his funky Y chromosome is on the back burner. (Chris says he will be an x-man because he has a genetic mutation.... boys, lol.) The cardiologist says this may have caused his heart condition. The OB says this may have caused my miscarriage last year, if it was a boy. Those questions will remain unanswered for me and that is perfectly fine.
His Precious Heart:
In short, it's a hot mess.
Ty has a complex heart defect. He has been diagnosed, therefore, with Congenital Heart Disease.
Problem #1 - Coarctation of the Aorta. This means his aorta is narrow, so much so that our cardiologist fears that it might be fused shut. When Tyson is born, he will be immediately given IV medication to buy us a couple of days. All babies have an extra part in their heart that alters the way blood flows through their heart because they get oxegenated blood from their mothers. This medicine will keep that from sealing up after birth, like most infants, so that he can be in the outside world for a least a day or so before he has to undergo heart surgery. They will remove the narrow part of his aorta and sew the two ends together. Hopefully this will be done through an incision on the side of his chest. If his echo after birth shows that a larger portion of his aorta is fused, this surgery will become open heart and might require the use of other material to replace the part of his aorta that they have to remove. Either way, we have been told to expect a lengthy ICU stay after he is born, somewhere in the neighborhood of 4- 6 weeks for this repair. While they are in there, they will band a portion of his heart to help prefect congestive heart failure from this other defect while we await surgery number 2.
If all goes well, after 4-6 weeks, we will get to bring Ty home for a few weeks (6-8 probably) before we return for surgery number 2.
Problem # 2 - Antrioventricular Septal Defect (AVSD). Surgery two will address this defect. They will remove the band that is in place to hopefully delay congestive heart failure and proceed to work on the issues involved with AVSD. They will patch a hole between the top two chambers of his heart and patch another hole between the bottom two chambers. Then, they will take his too-large atrioventricular valve and separate it into two valves (it should have done this in early pregnancy, but his stayed as one large one instead of two smaller ones). This will be the "classic" open heart surgery through the chest and will keep us in the hospital for 3-4 weeks if all goes well.
THE GOOD NEWS:
First and foremost, God is good ALL of the time. He is with us and with our precious baby boy every step of this journey. There is purpose to everything and though we might not ever know how, God is using this situation for His glory.
Second, while in utero, our little man is fit as a fiddle! Because his oxygenated blood comes from me, he is oblivious that he is presenting such health challenges. He is developing as any 29 week old should and until shortly after birth will not be impacted by his little heart.
Third, we found out early! From my reading, it would seem this is a huge blessing. Some people take their babies home and don't find out until weeks or months later that their child has a CHD! Sometimes even after tragedy strikes. We are comforted to know that we have a great team at Vanderbilt that know what is wrong and how to fix it.
Last, although our guy will probably never be an Olympic athlete and may have a leaky valve, he should lead a happy, healthy, full length life. He will always have a cardiologist and follow up visits, but if all goes well, his repairs will grow with him. If we can get through the first year, we should be good to go.
We Need Your Help (and the help of your friends and family too!):
Because every parent wants to be with their child when they aren't well....
Because we have two other children to care for and to get to and from school and activities...
Because we need to maintain as much "normal" as we can for our girls...
Because we live a pretty good distance from our closest family and several of our friends...
We feel that it is a need for Chris to take FMLA time off while Tyson is in the hospital. This will result in a major loss of income. We will also be logging lots of miles back and forth to Nashville. We have already been incurring income loss and additional medical bills for the many tests and specialists we have already seen. I will start weekly trips to Nashville next week - to 100 Oaks for OB and Vanderbilt for MFM and Cardiologist visits.
We need financial help!
We have set a goal to raise $15,000 before Tyson is born so that as we begin to face time off work and medical bills, we can focus on Ty's needs and not worry about how to pay the bills. There is a paypal donate button at the top of this page. You can make a donation to our family's needs with any major credit card, bank account, or pay pal. We will be eternally grateful for each and every donation. We also ask that you share our story with your family and friends and ask them to donate as well. This is a heafty goal and we feel awkward raising funds for our own family, but we just don't see any other way.
Last, and most important...
Please pray for Ty and for our family as we go through all of this. We worry, of course. We worry about our girls and how this will turn their world upside down. We worry about Ava Grace even understanding what is going on and why she can't meet her baby brother. We worry about Ty and the battle he has to face just to survive. We try to turn all of these worries over to our Lord and trust that His plan and His will are so greater than our own. Please join us in praying for health, healing, and provision for our needs.
Thank you so much.
We will use this page for updates throughout this journey. We felt like it would be best to have one place to update everyone.
