Sunday, September 4, 2005

Still Waiting for Results of the Genetic Tests

Hi, Lisa here! Well, I finally returned home on Thursday night after a long and draining week in the hospital. I won’t bore you with the gory details but basically my placenta adhered to the wall of my uterus and had to be removed by hand in a two and a half hour procedure. The doctors said they had not ever seen a placenta complication like this before. I think I’m trying to break a new record for weird pregnancy complications. I’m pretty exhausted after losing so much blood but I am slowly gaining back my strength.

As far as Kayla’s progress….the doctors suggested we attempt to test Kayla off of her ventilator last week. We were warned to keep our expectations low as it usually takes several attempts for babies to come off of their ventilators before they can successfully breathe on their own.

On Tuesday (8/30/05) at 11:30 a.m. Kayla’s tube was removed and she began breathing on her own for the first time with the assistance of an oxygen nasal tube. She was able to breathe on her own until Thursday (9/1/05) at 3:30 a.m., almost 41 hours! (We have added a new picture in the Photo Gallery) Unfortunately, the last nurse who had Kayla while she was off of the ventilator had her on her back which is most likely why she failed. It is the most difficult position for babies coming off of their ventilators. Kayla’s lungs collapsed during this attempt so we will have to wait until her lungs re-inflate before they attempt to remove her vent again. The doctor will write orders next time to make sure that she is kept on her stomach until she seems strong enough to handle being on her back.

On Tuesday (8/30/05), Kayla was fitted with two foot braces. These will help keep her feet from having ‘foot drop’ related to her muscle weakness. She will be wearing them two hours on and two hours off for the time being.

On Thursday evening, (9/1/05), Kayla set a new record by holding both eyes open for over two hours. To us, this was significant as she has only opened her eyes for several seconds once or twice a day in the past.

On Saturday, (9/3/05). Kayla weighed in at 6 lbs, 6 oz, a gain of 1 lb, 7 oz since her birth. She is now 19 ½ inches long, a gain of 1 ½ inches. GO KAYLA! Jeff and I were able to give Kayla her first real bath which was so fun for the two of us.  Kayla was also moved into a new covered crib that will allow us to protect her from the harsh lights in the NICU. We were so relieved that she will finally be able to get some rest.

We are still waiting on her genetic test results to rule out Congenital Myotonic Muscular Dystrophy and expect to get them back this next week. Kayla is only two weeks away from her original due date of 9/24/05 so we are getting closer to her next schedule brain MRI. Waiting has been the hardest part of this whole experience for the two of us but we are finally getting close to possibly getting some answers.

Thanks for hanging in there with us.


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