I think by now you all know that our third daughter has arrived. Sophie Michelle was born on Wednesday, July 28th at 2:12pm, 7lbs, 12oz, 21in. She is beautiful and we adore her already. Her first two days have been hectic though. She was delivered with no problems and did very well for her first several hours. Yet, she started having seizures later that evening and after a whirlwind day yesterday, she is now in the NICU at Fairfax Hospital. This wasn't completely unexpected as you all know that she was diagnosed with two cardiac tumors during the pregnancy. These tumors are associated with Tuberous Sclerosis, a genetic condition, and were monitored closely throughout the pregnancy. The tumors themselves have never caused problems. They have grown in size, as expected, but her heart has always been strong and without defect. They are expected to regress on their own as time goes on and are not a major problem. What they are is an indicator of possible Tuberous Sclerosis. The good news during the pregnancy was that in doing higher level ultrasound the doctors did not find any more tumors on in her body, making Tuberous Sclerosis less likely, but still a possibility as it is a condition that exists on a broad spectrum with a wide range of indicators. So we proceeded with the pregnancy with a best case scenario, trusting that our baby was in God's hands and that we would be prepared to deal with whatever came once she was born.
The seizures she's having further indicate that she might have Tuberous Sclerosis. Right now she is being succesfully medicated for them and undergoing a lot of testing to hopefully give us an answer in the next couple days. She's had/will have an echocardiogram, kidney ultrasound, MRI, eye exam, and bloodwork for genetic testing. The MRI and ultrasound will look more closely for additional tumors and the other tests will help put all the pieces together to hopefully give her a diagnosis. She is stable though and you wouldn't know in just looking at her that this sweet, healthy looking baby is dealing with some problems.
We are exhausted. I was discharged from Fauquier Hospital just over 12 hours after her birth. I have learned that there is a reason they keep you for a couple days after having a baby since being up and around, traveling by car, and handing all this information is overwheming physically and emotionally. But, we are hanging in there. Mike is amazing and is holding us all up in so many ways. He and I have much faith that this situation is what God has given us for a reason and that we have been prepared as a couple and as parents to handle whatever comes our way. The doctors and nurses we have encountered so far have been incredible and for that we are very grateful. The hardest part of all this is the helpless feeling as parents that there is really nothing we can do but be with Sophie when we can and trust her doctors and God that she will come through this in the way that it is meant for her.
We have felt such an outpouring of love, support, and prayers from our family, friends, church family, and even those who we don't know that are praying for us. The emails, Facebook messages, texts, and voicemails mean so much and I only wish I could respond to them more, but know you all understand that life is just too hectic right now. We are now staying at Mike's parents house, where Kayla and Madelyn are too. They are happily distracted playing with their four cousins who are here which is a blessing for them and peace of mind for us. We can be there for Sophie knowing that our older girls are well cared for and happy, yet still spend time with them when we aren't at the hospital and know they are closeby at all times. We have many other family members that have offered to care for them, if needed, and that is such a blessing as well.
So that's where we are with things right now. I will try to update by email when we have new information. We are hoping to get a lot more answers today based on the testing. The goal right now is to get her seizures stable enough that they can be medicated at home and to get her on a regular feeding schedule. Right now she's receiving most of her nourishment by IV fluid, but I have started pumping and will hopefully get back to nursing some in the next day or so. We are hoping that she will be able to come home sometime next week so we can get back to a normal routine. She'll still have to be monitored through doctor appointments for some time though.
Please pray for all of us and know how thankful we are for all of you.
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