Madison update- 7/27/2010

Today was a rough day but I am counting my blessings for all the little miracles and things we have. Madison continues to do well on some fronts and we have been presented with some new struggles on others. She is doing great on the regular ventilator. Her skin is improving for the most part. She looks like a little boxer in this picture with her hands all taped. But fitting since she is our little fighter. Her toes are much improved although the doctor told us that although they may not be black anymore we have to watch to make sure they grow properly. Madison's weight continues to remain about the same...around 1lb. 4.5oz. The doctors tried feeding her again but she didn't do so well with it which is not unusual for her gestational age. It was rather alarming seeing her today as she has an iv in her head. She has no more usable veins left and apparently, your head has very good ones. I had a hard time seeing her with it in but the drs assured us it was ok.

The hard new came when we met with the neonatologist. The doctor had called last night and said that Madison's head ultrasound had come back showing bleeding in her brain and she was concerned and wanted to meet with us today to talk about it. Needless to say, I didn't sleep very well last night. Madison has grade 4 bleeding in her brain, which is the worst grade possible. Usually, babies with grade 4 bleeds do not live but luckily Madison was blessed and due to the location of the bleed, at the front of her brain, the doctors feel that she still has a chance. If the bleed was anywhere else it would be worse because it would be where most of the new brain cells are made and she wouldn't have a chance. The grade 4 bleeding is only on one side of her brain although it has overflowed to the other side as well. There shouldn't be anymore new bleeds at this point, they just have to watch to see if this one is absorbed by the body. The doctor said that it would take a month or two to absorb. Also, we have to watch to see if, because of the bleed, her brain produces fluid normally and does not begin to back up and put pressure on her brain. If she cannot drain the fluid, then she will have to have an access portal put into her skull to drain the fluid. If she continues to need to access portal by the time she is ready to go home, then the doctors will be able to put a shunt in her skull and run a tube to her stomach to drain the fluid. This would be a lifelong problem that would require multiple surgeries to adjust her shunt. However...all of this is a maybe that could happen. As far as the bleeding affecting her brain functioning, the doctors said that about 80% of babies have some sort of brain damage that affects functioning. It is too early to see how she will be affected or what she will have to deal with but I am preparing myself to deal with some challenges due to this.

We feel so blessed that Madison still has a chance to live and continue to pray for her. We have seen so many miracles and prayers answered in regard to her development and health and we know that this new development will be no different.