I know I don't update this often due to the fact I don't have many appointments, and I'm still pregnant. The plan right now at Magee is to induce me at 39 weeks(so that is two weeks away). I noticed I didn't update the information on the pediatric surgeon either so I will start with that.
At about 34 weeks we talked to a pediatric surgeon at Children's hospital in Pittsburgh. Our hope was really brought up at the time, he stated he worked with babies who had this condition(MMIHS) and the prognosis wasn't as poor as literature stated.(A lot of the doctors base this disease off of the literature they read since they never seen it themselves). He stated what would happen during Janessa's first year of life, and how the transplant situation would work! He sounded very hopefully, and Caleb and I started to grow stronger over as what he said really enlightened our spirits, and our hopes.
Yesterday at Magee hospital I thought originally I was just getting a check up, and they were going to plan my inducement date, but it ended up after that I was talking with both a perintologist and neonatologist, and they gave me prognosis statuses of how Janessa most likely would turn out in the end. It really was a big hope killer as the neonatologist stated how she did not think Janessa was going to make it, and she explained different decision options with us.
First if the baby comes out breathing, and what not(she most likely will labor shouldn't affect the baby so much) if we wanted to do to do a comfort care plan or basically do the TPN plan to stabilize her. The comfort care plan was not to hook her up to TPN or anything and watch her day by day. Basically from my understanding of the disease, without TPN the baby will starve, and have chronic diarrhea, and most likely won't make it past two weeks. The other plan will prolong her life while she will be receiving nutrition through TPN, and she will be passing her urine and what not through catheters. How the neonatologists stated that procedure is what upset me, she basically stated the baby would be suffering, and in pain(seems odd if the job of the doctor is to make sure she is in less pain as possible through the procedures, like surgery, you don't get cut without being numb or what not).
Caleb and I made a decision on that this morning, and we are going to try the second method, if Janessa starts to go into a state where her organs are all shut down, and she is put on life support we will let her go freely, but why wouldn't we try if she can get the surgery one day(Hopefully).
I talked to many mother's recently with babies who have had conditions similar to this, or exactly like this. It has been a big help in our support, and what not to keep on fighting through this. We are hoping that Janessa will be a strong girl, and will hopefully be a candidate for a new organ. The mother's also stated that they could have their doctors who have been recently experienced in this talk to our doctors, but I want to wait until Janessa is born to see how this is.
In all honesty, all I can think of doing is leaving this in god's hands. If Janessa is suppose to be here, she will be here, but if not, it is an act of god, and for whatever reason it is his decision to take her to heaven. Please keep praying for her to have a chance with Caleb and I, I feel faith and hope are what will pull her through this!! I thank you all for praying, and thank you all for keeping her in your thoughts, it means the world to me. I'll surly update this as soon as I find out more information. Janessa is kicking right now, probably because I have the beatles on, she is so special to us, and we will always have faith, and hold on to her through the good and the bad.
Thank you all, especially the mothers who told me their stories, and helped me through such a difficult time.
- Marybeth
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