Baby Julia’s Survival Story

October 26th, 2011 by Kelly

Julia’s Survival Story

Like so many others, my sweet Julia was born 11 weeks early after I developed severe pre-eclampsia and HELLP syndrome. After arriving at the hospital with severe pain, vomiting, and extremely elevated blood pressure, we were told just two hours later that I would have to deliver immediately, and she was taken by c-section just a short time after.

Though so tiny, she was 2 pounds 13 ounces, which was a great size for her gestational age. Every time we spoke to her doctor, he would tell us that she was the “superstar” of the NICU, and her progress continually amazed all of those that cared for her. We began to believe that we would be in for a relatively short NICU stay, perhaps just a few weeks, until we could establish feeds and get her off the small amount of respiratory support she was using. I was told that they would start supplementing my breast milk to help her grow more quickly and get her off TPN.

When she was 11 days old, we left the hospital to have lunch with our older children. While Julia had seemed a little fussy that morning, she settled down for a nap when I left, or so I thought.

A little less than three hours later, we received a call from her doctor that every parent fears. We were asked to rush back to the hospital as Julia had developed NEC and was being transported to the Children’s hospital across the street in the event that she needed surgery. When we arrived, she was already on the ventilator and her belly was very swollen. It took them about 2 hours to facilitate the transport, even though the hospital was just a block away.

When we arrived at the Children’s hospital, we were told that they did not believe that they would need to operate, but that they would watch her closely. She was pumped full of fluid, blood, and antibiotics for three days before they finally took her to surgery. In that time, she more than doubled in size with increased fluid volumes, she was on an oscillator, and she had IV lines running into her head, hands, you name it.

After her surgery was complete, her surgeon told us that she had lost over 60% of her bowel, and that the rest was suspect. Most of her intestines were liquid, and he wasn’t sure that he had done enough to stop the infection. We’d have to wait six weeks for her to have her second surgery.

They tried to reestablish feeds between surgeries, but her ostomy was so high that she began dumping at just 2 ml per hour on continuous feeds, so they completely stopped.

At the time of her reattachment, the surgeon was forced to remove additional damaged bowel. All total, Julia was left with 48 centimeters of small intestine (vs. 250 in a ‘normal’ child), and half of her colon. She had extensive structuring and required seven separate areas of re-sectioning. Against all odds, she recovered very well from her surgery without significant infection or respiratory setbacks outside of a few days on the ventilator after surgery.

Tomorrow, we will finally take her home! She will be 15 weeks old, and while she is not on full feeds, she is taking about half of her feeds by mouth/ng tube, and will slowly work up at home. We feed her Elecare as she is better able to absorb that than my breast milk. While we are nervous about having a PICC line at home, we are thrilled to finally have our little girl home with our family! It’s a long, scary road, and it’s so hard to say what is the defining factor in why some babies make it and some babies don’t, but I count my blessings every single day and say a little prayer for the families that have lost their little angels.

20 responses to “Baby Julia’s Survival Story”

  1. Shannon says:

    So glad to hear that you finally can take your little girl home. Such a scary time. I hope that you can get her up to full feeds quickly. You’ll be great and I’m sure she will thrive once she is out of the hospital and surrounded by your love 24/7.

  2. Elaine says:

    Please let us know how sweet baby Julia is doing at home.

  3. Kelly says:

    Julia is doing great at home! She took some time to settle in, but seems happy to be with us all the time! She is now getting about half of her calories from formula, so that helps to shield her liver from the nasty effects of TPN. She loves to be snuggled and is constantly entertained by her brother and sister!

  4. Shannon says:

    So great to hear. I hope things just continue to go well.

  5. Elaine says:

    Love that she loves the snuggles she so deserves!!!! Wonderful news on her calories and joy she has with her brother and sister!

  6. Vina Ferrer says:

    Thanks for sharing Julia’s story. Our baby boy Tristan’s story is very similar to Julia’s. He had also lost a good amount of small and large intestine but sadly, he also lost his illeocecal valve. He will be going home with a Broviac and Gtube.He recently started dumping again so now they’re keeping him at the hospital until they can figure the amount of Elecare he can tolerate. I’m not happy that he will still be on TPN and Lipids but that’s the only way he’ll be able to grow. Please update us on Julia’s progress. Best wishes to her this New Year!

  7. Kelly says:

    Julia also lost her illeocecal valve. When she was in the hospital, she stalled out on 7 mls of Elecare per hour, and we had a Broviac and a G-tube placed shortly after she came home. She has been home for just a little over two months, and she is already up to 22 mls per hour of Elecare concentrated at 24 calories. We just have a little more to go and she will be done with TPN! I think many babies really take off when they get home, and I hope that you will have the same luck with Tristan! Feel free to reach out any time if you have questions.

  8. Vina Ferrer says:

    We are so happy to have found you! Finally we can talk to someone who can truly understand what we’re going through. I had also developed Preeclampsia and HELLP Syndro me. Tristan was born at 31 Weeks, weighing 2lbs, 10oz. has been in the NICU for almost 5 months. If he doesn’t start dumping, he will most likely be going home this Thurs. at 15ml of Elecare per hour. It’s very exciting to hear that Julia will be off TPN soon! At what rate of of Elecare does Julia have to be in order to be totally off the TPN?

  9. Kelly says:

    I believe she will be off at 30 mls per hour of the 24 calorie concentration. We can’t wait! I hope that Tristan gets to go home this week, please keep me posted! Julia was in the NICU for four months, and it was such a relief to have her home. Will you have home nursing care? If you would like, you can email me directly at Lots of luck to you this week!

  10. Kelly says:

    I just wanted to share the happy news that Julia is officially off TPN! She is almost seven months old, but her medical team thought she would be TPN dependent until her second birthday. We are beyond thrilled!

  11. Elaine says:

    YEAH Julia!!!! It is a VERY happy day for you!!

  12. donna mclain says:

    Hi I am the gmother and my daughter justcalled and my little gson Bryan birth weighed 1lb11oz has just developed. Necessary please pray for him we are so scared for him Andy daughter I am in Louisiana and she’s in Philadelphia and I can’t get to hercause I live on disiblity please pray cause he was airacle birth ty please. Excuse my typos. I can’t see tbrut tears

  13. Shannon says:

    So incredible Julia is off her TPN…sometimes the doctors don’t know everything 🙂 . Donna Mclain I am praying for your grandson.

  14. Elaine says:

    Great news about Julia.

    Donna Mclain we are praying for you, distance between you and Bryan is really sad…but the love between you both are strong. Hope, hope, hope.

  15. donna mclain says:

    Ty Shannon for your prayers God is working so hard for our little angel. I’ve been told he’s out of danger so far.they caught his necessary in time after my daughter had him transfered to the children s hospital no surgery was required no bowel destroyed They inserted piccolo line and he has gained a few ounces
    Ty too Elaine. I hope this can be an insperation to all that it can be a hope to all people with babies with nec

  16. Elaine says:

    It is true, it is all about hope.
    Hope, Hope, Hope.

  17. donna mclain says:

    There’s Hope for all!!! Maybe my grandson is here to let me share with you what has happened to him after my daughter transferred him to children’s hospital they changed his feeding tube daily and started small feedings of pedialiye and a protein solution. His weight has increased from 1lb 11oz to 2lbs 6oz
    He is off cpap.for. two days now. He will be on breast milk tommorrow. Ty for your prayers and know. I thank God.I pray I may be able to go see him and his sister.and my daughter soon

  18. Crystal says:

    My lil Anna is on day 105 in the NICU she had NEC and lost her illcecal valve, we are struggling with her feeds. She is not on TPN but she dumps every time we go above 20cal or give her a bolus feed.

  19. Kelly says:

    Crystal, I hope they are able to resolve her feeding issues soon. It took Julia a long time to accept bolus feeds, but she is now exclusively bottle fed during the day and only has the continuous drip feeds at night. I will keep you in my thoughts, and feel free to reach out any time!

  20. Rahul says:

    Richard you miss the point. Its not what a Govt does that is the argument, its haivng a Govt THINK they know the answers!The loss of easy oil will be dealt with by the free market, if it is ever allowed to run. The cost increses in fuel (worth 13c/L in the Middle East, the REAL cost of petrol without taxes) will spur new developments in energy. All you have to do is sit back and let people do it. The Rossi-Focardi reactor is one example immediately.NZ’s growth does not depend on a carbon tax or global warming, it depends on the people it contains and the way they are restrained by Govt. Think of that as Kiwis leave by the planeload every week, and your non-English-speaking New Immigrants are welcomed by the Labour Party.

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