So I know in the first posts I was still somewhat vague about Kelsie's condition and what we are dealing with. It is difficult to talk about, but my hope is that maybe by talking I can help another family who has to deal with the same thing. Right now, there's very little research to be found that's any help at all. Most of the information I have found has come from other parents' blogs. Kelsie has been diagnosed with an enlarged heart, which is somewhat common. But doctors also believe she has the most severe form of Potter/Potter's Syndrome which is called Bilateral (both sides) Renal (kidneys) Agenesis (lack of formation/malformation) -BRA. This form of Potter's is almost always fatal because the lack of kidneys causes the lack of fluid. The lack of fluid, even if dialysis and a kidney transplant were possible after birth, causes the lungs to be very underdeveloped. Most babies with Potter's who do make it to live delivery, usually do not live for longer than a few minutes to a few hours after birth due to basically being unable to get enough air. That being said, we had two choices at the time of diagnosis...continue on with the pregnancy and just wait things out...or terminate. A decision I never could have imagined I would have to make. Thankfully Dennis and I had talked about circumstances such as this before we ever decided to start a family and were in agreement from the beginning. It was not our decision. God had blessed us with this precious life. Although we don't understand why Kelsie faces the problems she does, and we hurt for her and for ourselves...her life is His life...not ours. Also, we have been very blessed with doctors who support us in our decision. Both my OB and the perinatologist told us that those were our options, but that if we decided we wanted to terminate, they would refer us to another doctor who would work with us. I am so thankful to have good Christian doctors who are working with me instead of pressuring me to do something that I could never do. Yes, it is incredibly hard to go through this pregnancy knowing that I might never get to meet my precious little girl...knowing that doctors are giving us basically a fatal prognosis. And I know a lot of people won't understand our decision. But for us, Kelsie is a gift. One of God's children. And her life matters, regardless of how long she is with us. She is a miracle and has been since the day she was concieved. God has a plan for her and for us...it's just really hard to see right now. But I know He has one. I just pray daily for the strength and grace to stay strong and make the right decisions regarding Kelsie's delivery and care. We spoke with one of the neonatologists at FGH this week. And while he was kind, he wasn't very encouraging. At the mention of Potter's, he automatically started talking about making Kelsie as comfortable as possible...a very hard thing to hear when you keep hoping and praying that someone will see something different and give you a better outlook. So for the moment, it's day by day, hour by hour. The plan at the moment is to make it as far as we can (hopefully about 38-39 weeks) and induce for a live birth. At birth the neonatologist will evaluate Kelsie and determine whether the doctors' diagnosis is correct or not. If they're wrong (the miracle we're praying for!), then he will do what he can to help her. But if they're not, he said we will not be forced to take drastic steps that will only cause her pain and won't help in the long run. He said they will be there to make sure that she is comfortable and not in any pain. Thankfully, he said that babies with Potter's do not seem to suffer any pain. And that is my prayer...that if we can't keep her, then the moments we have with her do not cause her any suffering.
We go in on the 23rd for a 4D u/s. Although I'm terrified of what more they might see, I am excited to be able to see my little girl better than we have so far. Will try to post pics if she cooperates. She seems to be a little like her mama and daddy...stubborn :) Until next time...
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