Tuesday, November 11, 2008

My Yellow Baby

Sometimes I just don't notice how yellow Juliana really is. I have been going through her abundance of photos that I have taken throughout her life and actually started to notice the progression of her TPN associated liver disease. I am so surround by Juliana and all of her issues that they almost seem normal to me. I met a little boy born 2 days before Juliana and it really hit me. I started to think about the long road that we have been traveling almost blind folded never knowing what is going to happen next. The progressions and regressions of her health have left me worn out and completely exhausted. Then I think about the "wonderful" doctor who told me and my husband that we should just abort because the road to come would just be too hard. Boy am I glad that we didn't listen to him. It hasn't been easy and we don't sleep much. We live in constant worry and sadness that our little girl is so sick. Would I go back and change the decision we made on July 10th to do everything possible to save our little girl? Absolutely not. She is the most amazing little girl I have ever met. With every challenge she perseveres and continues to thrive. Seeing her now and knowing where we came from really lets me know that we made the right decision.

Juliana is continuing to improve on a daily basis. We made another upgrade in her respiratory and she is now off CPAP and on a High Flow Nasal Cannula (HFNC). This works about the same as CPAP by delivering a constant flow of air and oxygen through her nasal passage. She started off on 7 liters on Friday and is now on 5 liters. She may within the next day or so move on to just a regular nasal cannula which will still deliver oxygen and air through her nasal passage just with decreased force. She has also started feeds on Sunday. She started off with 1cc per hour of Pedialyte. Yesterday after about 24 hours on pedialyte we switched her to neocate which is very basic easy to digest formula. She has been on Neocate since she has had her ostomies. It's been a few weeks so I am really hoping the she will be able to tolerate her feeds. Even though the Omegaven has bought us more time, our goal is to get her up to full feeds and off the TPN as soon as possible. The surgeons still have not given me a time frame that they think would be appropriate to consder her reanostomosis. So for now we will just watch how her feeds go and continue to ween on her respiratory support. She has made really good progress in the last two weeks and I couldn't be happier. We have really come to appreciate the little things in life that many people often take for granted. Please continue to keep Juliana in your prayers.



Look I have hands...











My big brother Omar.



My Daddy is so proud of me...

2 comments:

  1. Hey! My son hasn't been through nearly as much as your daughter but I can relate with the colostomy bag (he had an iliostomy, one off his little intestine). It was a long road with him having it, he got it when he was 2 weeks old & had reanostomosis about 10 weeks later. It seemed like forever, but all he has now is a little (ok well big, but getting smaller) scar on his tummy. Please just remember to keep your head high, remind yourself that things WILL get better! I know us NICU moms always think things are great & then something bad always has to come up.. But in the end it will all work out & be ok! Keep strong, once she gets out of there you will be so so so grateful to think back of all she fought for and everything she overcame! (including those doctors who say they wont make it!).

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  2. Hurrah for Juliana! She is moving right along. She looks so good. My daughter came home on 2 lt oxygen via nasal cannula. She'll be home in no time. Prayers for Juliana and your family.

    Shanon Woolley
    kinnickandcarver.blogspot.com

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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.