Our last two Doctor appointments we have been able to get 4D pics of our baby girl. It has been so great to be able to see her and feel a connection with her. It was also very helpful for me to see that she is a beautiful baby, just like her big sister Rose, and we are soooooo very excited to welcome her into our lives!!!
Here is a letter we wrote to our family to update them on my pregnancy. I thought I would share it with you all:)
Hey Family,Brian and I had what seemed like a million doctor appointments this past week and wanted you to be updated on whats going on. So, our baby girl is doing exceptionally well while I am pregnant with her. The heart Surgeon we met this week said that she is in the best incubator right now. Its better than any medical intervention could do. Brian and I believe that is because she is in a God made incubator, which He never makes mistakes:) That is why I need you all to pray that I will just be pregnant for the rest of my life...ok so that's not going to happen but I kind of wish it could. Our OB visit went well this week. So, if you didn't know whats going on, she has been diagnosed with Down syndrome and possibly 1 of 4 undetermined heart issues, which one of them will eventually be the correct diagnosis, it just might take until she is born and they can actually do the ultra sound on her instead of through me to be sure. Nothing new at our OB visit was found(for once) for us to stress about. We love our new High Risk OB. He is very kind and has a special needs child himself, so we feel like we have something in common with him. He also takes a special interest in fetal hearts and therefore is an absolutely perfect fit for us and our needs.
After the OB visit we went to the hospital, Norton Suburban where she will be born and met with one of the Neonatal doctors there. There are quit a few of them. She was absolutely amazing and I truly feel that our baby girl will be in good hands. We were able to speak with her for about an hour and a half and she pretty much just let us know for the most part how everything should go, so that we can prepare ourselves. She said that the delivery room is going to be packed full of nurses and doctors for both me and the baby, during delivery. She said that as long as if she is doing ok we will get to hold her for about 20ish minutes before they whisk her away to the NICU to do a ton of testing. After that 20 min. there is a really good possibility that we won't be able to hold her again for a few days, possibly til after her heart surgery. This is because of all of the wires that will be attatched through her umbilical cord. I guess they fall out pretty easily...So, She suggested that anyone who we wanted to see her need to be outside the door so that they can enter the room as soon as possible after her birth. We will need someone to be at the hospital with Rose because it is sooooo important to Brian and I that she can see her sister at that moment, because she won't get another opportunity to hold her or see her until she is out of the NICU which could be anywhere from 10 days to 2 months. I am not sure what everyone's plans are in October, but there is a REALLY good chance that this will be the birth month, any time that month and we would love to have our immediate family members there to be able to see her before she is taken away. We would like it to just be the adult members of the family and Rose for this visit. The doctors want me to carry the baby as long as possible but if she tries to come from 36 weeks on they won't try to stop it. So, that is why we are saying anytime in October. Quite a few DS babies come a month early, but of course we are still rooting for the 11/1/11 birth date. The next morning after she is born the dr. said that they have a meeting and talk about the baby and whats going on and how they are going to approach the issues. She highly recommends that Brian is there, and me if at all possible, so that we can know all that is going on. The initial diagnosis with baby's heart -Hypo-plastic Left Heart Syndrome, is one that we really, really don't want her to have. Luckily the doctors seem to think it will not be this, but we won't know for sure until then. This diagnosis requires 3 open heart surgeries and the first surgery has a %70 success rate with kids who don't have any other issues. The Neonatal doctor said that the success rate is cut in half with babies with a disability, so that puts us at not the greatest of odds. The other 3 heart diagnosis that we have been given are not as risky. 2 of the 3 would require immediate surgery.
After that visit she took us over to Kosair to the NICU where our baby will be and let us have a little tour. There are so many sweet babies there with so many wires and machines hooked up to them. It was hard to imagine that our little baby will be in the same place. But once again we have really liked all of the Doctors we have met and feel like we are in good hands. We met with our Pediatric Heart Surgeon on Friday and wish that we had a specific diagnosis instead of 4 to talk about. But he seemed very knowledgeable and capable of what he will need to do.
That's pretty much it for right now. This has been a very emotional thing for us to deal with and we so appreciate all of your prayers for us! We truly have been strengthened. Brian and I are very excited to get to be involved with the DS group here in town! We are so excited for our little baby girl to join our family. We believe that the first year will probably be pretty rough on us all, but we will make it through. Our social network will definitely be growing and we are looking forward to all the new friends we will be making in our future.
We Love you!!!
Amber, Brian and Rose
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