Tuesday, October 21, 2008

Going to Boston

As you know Juliana has had some gut issues over the last month and half. She has not been tolerating her feeds and has been receiving a nutrition packet her whole life to ensure that she is getting the nutrients, vitamins and fats she needs to thrive and grow. Although this is meant to benefit her at the same time it is hurting her and the longer she is on it the more damage is done to her liver. Her liver is in really bad shape right now and is not going to get any better if things continue the way they are. Fortunately the Children's Hospital Boston has a great program that has been saving children's lives and livers. They are giving a special nutrition packet that contains fish oils. These oils replace the lipids (fatty acids) that are given with the TPN. Her liver will not heal over night but with time her liver will stop deteriorating and eventually improve. Her reanostomosis is not scheduled for another 3 weeks. So we anticipate that she will remain in Boston for at least a couple of months. After her intestines are reconnected she will need recovery time and then will have to build up her feeds to the point were she can come of of the TPN. The goal is to keep her on the fish oil program till she is at full feeds and no longer using the TPN.

I know this all sounds great for Juliana and it is. It is going to be very hard to only see her on weekends. I have been at her bedside everyday (except for one day when I was battling a fever) and to think that she will spend four days a week without her family is terrible news to me. Juliana is stronger than all of us and I know she will do just fine. I am really trying to think of it as just a couple of months out of her long life that we will share together.

Please keep us in your prayers because the battle is not over yet. We have come a long way but still have a long way to go.

2 comments:

  1. Hi,
    I found your blog while googling Omegaven. My daughter Ellie was the 23rd baby to go on Omegaven and we think it saved her life. Congratulations on going to Boston. The doctors there are great.

    Ellie is 2 and a half right now and is pretty much a normal wild child. Your daughter is beautiful and such a fighter. These kids are amazing, they make us all look like wimps.

    I hope you have a safe trip and if you need to talk to some one who has done this trip before, feel free to email me.

    Abby Brogan
    Mom to Ellie.
    eleanorbrogan.blogspot.com

    ReplyDelete
  2. I'm sorry to hear this news. My daughter Kinnick had a lot of gut issues, too. Her liver was in terrible shape. It was really large. I thought it would never go back down. While in a NICU hospital 15 hrs from my home, the head guy noticed her enlarged liver and suggested increasing the dose of her seizure medicine. He said that it would actually help her liver - side effect or something. Anyway, her liver improved and went down to normal size within a couple of weeks of increasing the dose and her number went back to normal - no more orange kiddo. I don't know if your is the same issue, but thought I might mention this.

    Best wishes,
    Shanon Woolley
    kinnickandcarver.blogspot.com

    ReplyDelete

Juliana Maria was born on July 12, 2008. She is a micro preemie born at 1lb 2oz. 11-1/2 in 23 weeks and 4 days gestational age.