Hello Family and friends,
We wanted to create a space where we could update everyone on our sweet baby girl in one place.This will be a "brief" update of our journey so far. First, thank you for all of the support, love, and prayers. We feel so blessed to have so many people in our corner. The support is truly overwhelming and appreciated.
Our Journey began at my 20 week ultrasound on January 14th. This ultrasound is meant to check on the babies development and we also got to find out the gender. What was seen on the ultrasound was bilateral Choroid plexus' on the brain, this means there were cysts on her brain on each side. She was measuring small and her fists were clenched but we also got to find out we were having a baby girl!
The next few weeks can only be described as waves of information and emotions. We saw the maternal fetal medicine specialist who tried to get a better look at the heart but our girl is stubborn and does not like ultrasounds. They speculated that what they were seeing matched the diagnosis of Trisomy 18 which is a very rare but fatal chromosomal disorder. To know for sure we needed to do an amniocentesis which did confirm that she has Trisomy 18.We had to wait 10 days for these results. We were told that she was not likely to make it full term and that we could induce delivery when we wanted. They also told us that if she does make it to full term we would have minutes to hours with her. Our girl was not giving up so neither were we. When we got the amnio we also had another ultrasound to get a better look at her heart. The specialist could only see so much because once again our girl wanted nothing to do with letting them see her heart. But they did see abnormalities with the lining of her heart which concerned the doctor that she could be in heart failure. From there we made an appointment with the fetal echo ultrasound to really get a good look at her heart. In the weeks leading up the appointment we had to go to the doctor weekly to check to make sure her heart was still beating.
At the fetal echo ultrasound there were a couple of findings. 1. there is a narrowing of her aortic valve 2. her right ventricle has the thick lining and 3. she has a hole in her heart. The cardiologist made these sound like they were not super complex issues but they still would require open heart surgery. The heart surgery would not have to be right away but it all depends on how she comes out and if she can sustain on her own. We left that appointment feeling hopeful that we could possibly bring her home. Again we don't know what that would entail but having the hope is a big deal. The thing with trisomy 18 is that there is so much information but there is so much unknown in regards to our little one and unfortunately we will not know what to expect until she is born.
We know a whole lot of information but also know nothing at the same time.
Things we do not know:
- When she will need open heart surgery
-How her organs will function once she is born
-How long we have with her
Things we DO know:
-We will do whatever is necessary to make sure she has a good quality of life
-She is so very loved
-Winnie is a warrior
We meet with the Medical team in two weeks and will hopefully get a better idea of what delivery day will look like. For now the plan is to get ultra sounds weekly to check on my fluid count and that my placenta is working. At the moment we are planning on inducing at 37 weeks but could be as early as 35 weeks which would be the week of the 18th in April. Until then, Winifred Jesse Racusen is so loved and we are excited for the day we get to meet her.
Much Love,
A, C, & W
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