Finley’s Story

First Ultrasound - 12 weeksAt our 20 week ultrasound appointment Wednesday March 31st 2010 (ironically CDH Awareness Day), Jon and I were thrilled to get the news we were having our second girl but that news was quickly overshadowed by the fact that our baby had a pretty serious complication. We were told that our baby has a left-sided congenital diaphragmatic hernia (this happens in one in about every 2,500 births) which means the diaphragm didn’t close entirely when it was supposed to and some of the lower organs (in our case; stomach, intestines, and spleen) are up where they shouldn’t be. As a result, the lungs don’t grow to normal size.  Our inital lung/brain ratio was a 1.0. Which we would later find out with liver down, doesn’t mean much. We were told in 30% of these cases there are additional chromosomal abnormalities accompanying the hernia. They ran Amnio and Fish tests and we were happy to get negative results of no further abnormalities. Given our set of factors, we were told she had  a 75-80% chance of survival given Emanuel Children’s Hospital’s experience.  A HUGE difference from the initial 40% we were told.  I tried to ignore the percentages because each case is so different and I knew Finley was in God’s hands.

We asked for lots of prayers that her lungs would grow large enough and that she would stabilize quickly after birth without too much damage to other organs. God answered all our prayers. She was on Nitric Oxide (8 days), a High Frequency Vent (12 days before surgery and 3 days after surgery), Conventional Vent (5 days + 12 hours), and Sildenafil (33 days). On her 19th day of life, Finley had her surgery (plug repair) and by her fourth day after surgery she was on a High Flow Nasal Cannula!

49 days after her birth, Finley came home.

2 weeks after she came home she started showing symptoms of a Choledochal cyst (acholic stools, palpable mass, jaundice) and after a confirmation from ultrasound on that Friday, she was promptly scheduled for surgery the next Monday. But over the weekend prior to the surgery – her symptoms abated and a follow up ultrasound looked completely different.  Her bile was described as “slow moving sludge” so she spent 6 months on bile thinner. The doctors are continuing to follow her since it is unclear if she truly has a cyst, or just a slightly larger than normal common bile duct.

On December 30th, 2010 Finley (4 1/2 months old) had her second CDH repair because she had reherniated – 2 holes.  This time she got a gortex patch. We came home after 1 week in the hospital.

Finley likes to keep us on our toes, but I wouldn’t have her any other way.

I am always happy to connect with other families as they begin their CDH journey (or Cholodochal Cyst journey).. please feel free to email me at dooleyliz at gmail dot com.

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6 thoughts on “Finley’s Story”

  1. Liz–I didn’t realize what was going on with Finley. I’m so sorry I haven’t been in touch sooner to lend my support. Thank you for starting this blog and posting updates. I think I’m caught up. If you need anything please let me know how I can help. Take care. Hugs.

  2. Hello Liz,

    I came across your blog through a friend of mine, she sent me the link because we also delivered a CDH baby girl at Legacy Emmanuel. Our daughter, Zoe, will be 2 years old in a month- incredible!! It has been a long journey, but we wouldn’t trade any of it. Everyone at Legacy Emmanuel is amazing! We still keep in touch with many of them and were just down for a NICU reunion a few weeks ago. Dr Bliss, the surgeon, is one of the most incredible people you will ever meet. The doctors and the nurses, fantastic! We miss them and still talk about them all the time. We live up near Seattle, so we do all our follow up care at Seattle Childrens Hospital. Zoe’s website is http://www.zoehenry.com if you want a bit more of her story. Feel free to contact me if you want to. I know it can be a scary time, but you and Finley are in the most amazing hands at Legacy. We are sending lots of positive thoughts and prayers your way. Let us know if we can do anything. Zoe was an ECMO baby down there so if you want any info on that just let me know. I also have a friend up here who has a CDH baby boy and a 3 year old who has some words of wisdom on how she dealt with having another child while in the NICU. There is a chaplain down in the NICU named Jill James who is amazing and was a really calming force for us, I’m sure you’ll meet her and love her. Praying for you all, Shannin, Jason, and Zoe Henry

  3. I found you blog in July and have been checking it on a daily basis 🙂 I have been praying for Finley and sending positive thoughts your way. I’m so glad that Finley is such a strong little girl and has made it through so much, including her surgery. Your blog has really given me strength, inspiration, information and most importantly hope. My daughter and her husband are expecting a LCDH baby girl on Oct 6. Gwenivere will be our first grandchild and she will be a CDH survivor, just like Finley!

  4. I just found your blog… and it is inspiring to read. =) I am 21+3 weeks along, and my baby girl was diagnosed with LCDH at 14 weeks along. It’s been very daunting, stressful, and a long 7 weeks…. but I know that we will get through this. I live in WA state, and am doing everything in my power to get my insurance to allow me to deliver in Portland, OR! I started a blog @ skittlesjourney.blogspot.com I was looking at a contact page for you, but I don’t see one. Anyways, thanks for sharing your story. I hope to join you in the successful statistics!!! =)

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