....I am sitting in my car outside my house while Grace sleeps in her car seat! I cannot carry her up the stairs in the house to bed anymore due to my enormous belly growing incredibly quickly! So when she falls asleep in the car I hang out with her and surf the net. I came across the link for our blog and will start to update this on a more regular basis now.
There is something important I need to share here and that is about our babies. On May 26th, 2009 we went for our ultrasound to find out that we have two wonderful boys. One of our boys, whom we have named Luke Alexander, is very happy and healthy and our other little boy, Samuel (Sam) Oliver, is probably very happy, but not so healthy.
Sam has a congenital birth defect called Anencephaly which is not compatible with life. This essentially means that his skull has not formed and therefore has not created the ideal environment for a brain to form either. An Anencephalic baby can grow and develop pretty normally in utero, but will not survive very long after he is born. We have been told that he will probably leave us before he is 48 hours old.
Here is the definition of bitter-sweet right here and how do you deal with that? How can you plan a nursery and a funeral at the same time? So what happens now? These are the millions of questions we asked ourselves a month ago when we found out about our little boy.
Since then I have been on many websites and have found wonderful support in the local area and on the web. We are firstly fortunate to know so many wonderful people who are there for us and will be there for us in the next few months. I have found a couple of groups/resources on facebook that have been very welcoming and supportive. There is a great deal of imformation out there, it is just a case of knowing where to look.
Our Midwife was there for Grace's pre-natal care and birth and she was at the ultrasound when we were told the news and has been, and still is, a fantastic support to us. I am going to continue under her care for as long as possible and she even said it may be possible for her to be at the birth, I hope so.
Dartmouth Hitchcock Medical Center (DHMC) has also been fantastic. A couple of days after we found out about Sam I dropped in to see my IVF nurse to tell her the news and she immediately called people in the Maternal Fetal Department to see if my appointments had been taken care of for follow up. On Friday May 29th we were in for another ultrasound and to see the Genetic Counsellor and the Maternal Fetal Doctor. Sam's condition was re-confirmed and they took some wonderful pictures (see above).
Since then we have seen the Palliative Care team at DHMC and they will be helping us to come to terms with what is happening in our world right now and what will be happening after the birth.
Our next appointment to see everyone is on July 1st.
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They are both precious!!!ReplyDelete
Just came across your blog through another, and wanted to tell you I just lost my daughter Jillian, just 8 weeks ago on Monday, she also had Anencephaly. I am praying for you.ReplyDelete