Negative - Again!!

Thursday, October 2, 2008
So Kennedy is doing really good. In just two weeks she has improved so much. I am just ready to get her home already. I love the NICU and all of the nurses, however, I am so sick of spending all of my days and nights there. I just want a "normal" life again. I want to get Kennedy out of the NICU before the RSV season starts. She is very susceptible to getting sick again and I don't want anything to comprise her health.

So yesterday Brian and I spoke with one of the fellows regarding Kennedy's progress. We inquired about the CDG-1a test, but did not think they would have the results back. To our surprise the results were in and they were NEGATIVE!!! So far they have tested for Luekodystrophy and Congenital Disorder of Glycosylation Type 1a and both have come back negative. I asked her if she had any idea what was wrong with Kennedy or where they were going to go next and she had no idea. I know that inborn errors of metabolism/Metabolic Disorders are hard to detect, but geeze....Kennedy has been in the hospital for 7 weeks (since birth) and the only concrete answers we have received are that she has an undeveloped cerebellum (Cerebeller Hypoplasia) and she is hearing impaired (to what extent, we don't know yet). The fellow was not sure what direction the Geneticist and Neurologist were going to head next - I guess only time will tell.

We have had many people suggest to us that Kennedy is probably unable to hear higher tones. This makes so much sense. For the longest time I was telling Brian that I didn't think Kennedy could hear me. She never looks my way when I talk to her and she never turns her head when I walk into her room. However, when Brian talks to her you can see her come alive. She looks at him very inquisitively and loves to hear him sing to her. The doctors have suggested that she might be able to hear Brian's voice better because he has alot of lower tones to his voice, whereas I have much more higher tones to mine. It makes me feel jealous and sad that Kennedy might not be able to hear me talking to her. I am just glad she can hear something though, because this means she will still be able to talk and communicate.

Kennedy is continuing to gain weight and grow. In just two days she has gained over 6 ounces. She now weighs 7 lbs 9 ounces. We will see how long she is on Saturday (length is only done once a week). The nippling is going good as well. We are currently up to 68 cc's every feed (8 times a day). On average Kennedy is nippling 50 % of her feeds. She is able to take the entire bottle if she is up and alert, however, she does not want much to do with it when she is sleeping. I am going to speak with the doctors about training Brian and I on her NG tube or corpack. This is the tube that goes down her nose and into her belly. If we are comfortable with the process they will send her home before she is able to nipple all her feeds 100%. This way we can hopefully take her home sooner then later. She is still fighting her Jaundice. The doctors have increased her liver medication to hopefully allow her liver to flush out the excess billiruben. We have been told that the jaundice could be caused because of her prolonged exposure to the TPN that she was on for nutrition or it could be related to her Metabolic disorder. (Who would have known that a 7 week old baby could be so complicated)

Before every preemie can go home they have to pass a car seat test. This is where the baby sits in his/her car seat for 90 minutes with no d-sats below 85. We brought in Kennedy's car seat last night for Michelle to administer the test last night. Kennedy was doing so good until the last 10 minutes. She d-sated to 72 and was not able to recoup until she was taken out of the car seat. So we are going to try again on Sunday.

I am just ready for my baby to be home. I feel that I am ready for anything that could possibly happen. I know that I will be able to keep my cool in almost any situation. Being in the NICU for more then 50 days has really prepared me for anything. You see and experience alot of things that most parents will never have to go through.

(Above: Kennedy sleeping and my chest. She loves putting her hands under her face while she sleeps. Brian and I can pull them away and she will put them right back)

(Above: Daddy and Kennedy after her bath)

(Above: Kennedy sitting up in her seat that her P.T. gave her to strenghten her back and neck muscles)

(Above: Kennedy deep in thought. She is trying to plan her escape route)

(Above: Grandma and Grandpa together with Kennedy for their first portrait together. We were able to take Kennedy out of Room 3 and to this family room for about 20 minutes on Monday. It was so nice to be able to walk down the hall with her in my arms)

(Above: Kennedy sitting on a couch for the first time in her life)

(Above: Daddy and Kennedy relaxing on her Boppy)

(Above: Kennedy is so full of facial expressions. Even though she can't talk she can still get her message across)

(Above: Kennedy and I kangarooing. This is something that is promoted in the NICU to bond with your baby. Kennedy is in her diaper only and I place Kennedy on my chest with my shirt open. Researchers have found that the close physical contact with the parent can help to stabilize the preterm infant's heartbeat, temperature, and breathing.)

(Above: Kennedy asleep after her 11:00 pm feeding)

(Above: Kennedy sucking her thumb)