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Sunday, January 24, 2010

A roller coaster ride, and a baby shower.

I'm thinking that maybe an actual "baby status update" may be in order. The last few weeks have been a roller coaster of appointments, and highs and lows.

Two weeks ago, we met via video conference with the Genetics team at IWK. I actually was under the impression that we were meeting with the Cystic Fibrosis team, and therefore was prepared for a talk about CF. The Genetics team did their best to tell us about CF, but then went into the Genetics aspect of it. When it was all over, and we were walking away from the hospital, my husband looked at me and said "So, we'll go ahead and book a vasectomy?". They said that they would "be very surprised if the bright bowel seen on the ultrasound, is caused by anything other than CF". You see, my hubby and I carry the most common mutation for CF called delta-F-508 (neither one of us have the disease). They figured that our daughter will likely be "pancreatic insufficient", meaning that her pancreas will not work properly and she will need enzymes to digest food properly, she MAY develop diabetes in the second generation of life, and then there is the respiratory side as well. They talked as though she already had the disease, and told us her odds of having it are over 90%. My mind was so full after this appointment, and I really was not sure what to think, but I would classify it as a "low".
Later that week, we went to see the specialist. She did the ultrasound check up and said that the bowels look good (no malformations or obstructions yet), and they were still a "teeny bit bright". Our "little girl" is estimated to weigh 5lbs 9 oz already (at 33 weeks gestation). The "high" of this appointment was when she said "If I didn't know your history, or what I was looking for, I would not think there is anything wrong." We took this "high" in stride and we try not to dwell too much on it, for fear that it may lead to a big let down later.
Last week, we had a video conference meeting with the CF team at IWK. They told us a lot of things we already knew and discussed how the possibility of her having the disease effects the "paths" we may take after delivery. She may be fine, and we may bring her home and just wait for the call to find out the results of the genetic testing of her cord blood. If the tests reveal that she has CF, we will then pack her up and take her to Halifax for therapies and education for us on how to deliver the therapies. There is also the possibility that she may have a bowel problem at birth, which may require her to be flown to IWK for surgery/treatment. We are hoping that this does not happen, but knowing it could happen, takes some of the fear out of the unknown. In the event she has to have surgery, she could be in Halifax for 2-3 weeks. They put her odds of having CF at 98% (when our genetic profile is combined with the "bright bowel"). Yet, another "low".
Whatever happens, I think we are as ready as we can be. I've read the literature, I've met with the doctors, counsellors and other people "in the know". So now, (as you may be able to tell from my most recent posts), I am enjoying the "fun stuff". Like organizing the nursery, setting up furniture, and some quiet time with myself, my hubby and friends. I am so excited that my BF over at "My life in Purple" is hosting a baby shower for me two weeks from now! And Melly over at "The Ideologies of Melissa" is helping out as well. We are really looking forward to this afternoon, and another "high". :)

1 comment:

  1. Every life as highs and lows, so just enjoy the highs and take the lows in stride. In the end, it's all you can do anyway. :)