Hi All,
We had our second fetal echo and medical meeting last Friday. I wish I could be giving better news but we were overwhelmed with so much new information that we are still trying to digest. I will try my best to convey what we learned. Winnie's heart is more complex than we thought. She still has the thicker walls on the right ventricle, hole, and a narrowing aortic valve. The hole is causing oxygenated and deoxygenated blood to mix, not making it to its proper channels and the narrowing of her valve will cause turbulence for the blood getting to the lungs. If we decide to intervene after birth she would would have to be taken to the NICU immediately and started on an intensive medication through an IV to try and get the blood to go where its supposed to go. They would then wait to make sure she's stable and then move onto a different intervention. This intervention would mean she could be in the NICU for several months. Though every trisomy 18 baby is different, the last baby they did this treatment with was in the NICU for 8-9 months. Aside from her heart our little girl has some cards stacked up against her because of trisomy 18. Her small size, she is 2 lbs 10 oz and projected to weigh 3.5 lbs when she is born, impacts her body regulation. She will have difficulty regulating her temperature, blood pressure, blood sugar, and calorie intake. Another symptom of trisomy 18 is having a small lower jaw and they are seeing this on the ultrasounds. The reason having a small lower jaw is an issue is because her tongue will still be average size but will be enlarged because her jaw is smaller. This causes issues with her ability to eat and breathe. Trisomy 18 also causes severe cognitive delays and effects the base of the brain which controls automatic responses. Her brain could forget to tell her to breath and she could have episodes of holding her breath.
The other part of our meeting was discussing the different paths we can take when she is born. The team really listened to us and what we value and our priorities when it comes to proving the best quality of life for our Winnie girl. The two different options are comfort care or intervention care. For intervention care, as I mentioned she would be taken to the NICU as soon as she is born to get started on the medication for her heart. Right now we don't know what other interventions she might need and we wont know until she is born. The other option is comfort care. Comfort care means they would take Winnie's lead and provide what she needs but in a noninvasive way, this could be giving oxygen or feeding her. There is a possibility of still being able to bring her home on comfort care and we would work with an outpatient team who would come to us once of twice a week to evaluate her.
To say the least it was a very overwhelming day for us. There is still a possibility that she could pass away in utero or during delivery. We will never know how much time we will get with her but we are so hopeful that we will be able to meet her and hopefully have family meet her as well. I wish I could keep her safe in my belly forever but we also just want to meet and be with our Winnie girl.
The plan is to still induce me at 37 weeks which is the first week of May. We do not have an exact day scheduled yet but plan to have it picked by this week.
We appreciate the continued support and prayers from our family and friends.
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| A 3D of our sweet sweet Winnie |
A, C, & W
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