Oh the Doctors.....

Monday, November 3, 2008

I never realized how tiring all these doctors appointments could be. Since Kennedy got out of the hospital two weeks ago we have seen alot of doctors and nurses. She has been to her pediatrician twice (once for her first follow up appointment following her release from the NICU and the other time for oral thrush). We have had a nurse come and visit the house three times. Her Occupational Therapist has come twice, however, Kennedy decided to sleep through once of her appointments. Kennedy and I also had to go to the Audiologist for her hearing. We also visited the GI doctor today and that's not the last of it. In the next two weeks we have a Nephrology appointment, Neurology appointment, Ear Nose and Throat appointment, and we have to get Kennedy synagis shot (this is for RSV).

When we left the NICU we knew we had to follow-up with a Audiologist regarding Kennedy's hearing. The Audiologist appointment was very informative, however, until we see the Neurologist we still have a lot of unanswered questions. According to her last hearing test administered in the NICU it showed Kennedy had partial hearing lose in her right ear. In order to test Kennedy's hearing I was instructed to keep her up as long as possible because I had to bring her in tired and sleepy. The test could only be administered if she was sleeping. As most of you know Kennedy sleeps a lot. Our appointment was at 10:30 am. I woke her up at 7:30 administered her meds and then fed her a half our later. Once her belly rested I knew I could keep her up if I gave her a bath. So after the bath I put her under her jungle gym. I managed to keep her up until 9:15, although I worried that it was not enough. The appointment went well. Kennedy slept almost the entire time. The test showed that she has partial hearing lose in both of her ears. However, we need to consult with the Neurologist and ensure that her brain is processing the information she is hearing. If everything is fine "upstairs" then we will be able to get Kennedy fitted for two hearing aids and everything will be fine. But if everything is not wired correctly in her brain I don't know what we can do. Hopefully she will be able to pick up on sign language. I guess only time will tell.....

Today, we had our follow up appointment with Peds GI. As we walked in we saw our friends from the NICU The Clayton's. Their daughter Kennedy was released from the NICU two weeks before Kennedy was released. It was very nice to see a familiar face and have someone to chat with about life after leaving the NICU. I think once you have a baby in the NICU there are only very few people that truly understand and can relate to you. It seems that their daughter is really doing well. She is really thriving at home - which is so great.

It was really good that our GI appointment was when it was because I have become very concerned with Kennedy and her eating. She has really really digressed with her nippling since we came home from the hospital. Brian and I have really backed off the nippling in the last week. This is because every time we give Kennedy the bottle she begins to vigorously suck and drink, however, once the milk enters her mouth and she swallows she gets this look on her face like she is drowning and begins to scream. At the doctors today, I got out Kennedy's bottle and showed the doctor. Kennedy only took two sucks and the doctor told me to stop. He said the he thinks that the milk is going down the wrong pipe, meaning it is going into her lungs - which is no good. This could cause Kennedy to develop Pneumonia. So he ordered a swallowing evaluation STAT and told us to feed her via the corpak, he does not want to give her the bottle. Our appointment is set for Thursday, unless there are any cancellations. Depending on the results of these tests we will know if Kennedy will need surgery to get a G-tube placed. I will keep you all posted.

By the way.....Kennedy weighs 9 lbs 6 ounces. She has gained 1 lb 5 ounces since she was released from the NICU. We are also beginning to increase her feeds. As of today she is getting 90 cc's (3 ounces) 6 times a day. In the next two or three weeks we would like to be up to 120 cc's (4 ounces) 6 times a day.

(Above: Auntie Tracey and cousin Brennen hanging out with Kennedy)

(Above: "I've got no strings to hold me down" this is one of the first and only pictures I have of Kennedy with no strings or cords attached. Gosh I can't wait for the day when she has no more wires)

(Above: Mommy and Kennedy)

(Above: Kennedy modeling her new outfit - I know she has alot of clothes but I couldn't resist)

(Above: Grandma and Grandpa hanging out with Kennedy while Brian and I made dinner)