A week after I found out I was pregnant, I began to bleed from a sub-chorionic hematoma and was on bedrest for 8 weeks. It ultimately disappeared and I stopped bleeding. At 13 weeks gestational age, during a sonogram, she was diagnosed with a giant omphalocele. Hers held her liver, gallbladder, and very little small intestine. The amniocentesis showed no chromosomal abnormalities and the echocardiogram showed no heart defect. A repeat echo at 28 weeks revealed a small VSD. After birth, they discovered a PDA, PFO (a type of ASD), and the VSD was considered moderate size...basically 3 holes in her heart. The PDA and PFO have closed, and the VSD is getting smaller. We chose to stay closer to home for her delivery, NICU stay, and surgeries (UMC in Jackson), which we were very happy in the end with that choice!
She arrived via C-section at 37 weeks 2 days on July 9, 2012. She weighed 5 lbs 2 oz and was 17 1/2 inches long. At 4 days old, she had a full O repair with complete muscle closure. She spent a total of 21 days in the NICU (and the last 1 1/2 weeks was just getting feeds up).
Around 1 month of age, we noticed a very small bulge around the incision that increased in size over the next year. Basically, her abdominal muscles "broke" and were not strong enough to hold the organs inside. At 18 months old she had her second successful surgery for ventral hernia repair. The surgeon was able to close her again withOUT using a bio or synthetic mesh. He also removed old scar tissue and created a whole new scar along with her new belly. yay! 1 week after surgery, she finally began walking at 18 months! God is so good!
She takes Prevacid for acid reflux and Miralax for constipation. The VSD does not cause any issues at all. She is doing great! She used to spit up pretty bad and get fussy after feeding but it improved tremendously with each passing month. She LOVES food and eats more and better than my older two non-O babies! :) She is tiny and petite for her age, but she has a BIG personality to make up for it! She continues to be a fighter!
Merritt is almost 4 years old now. Weighs about 30 pounds. She is a healthy, happy, typical toddler. On occasion she might say her belly hurts, but it doesn't slow her down from playing or hinder anything. Usually its from gas, something she ate, or needing to go to the bathroom. :) We have never been back to the hospital for any reason since her last surgery almost 3 years ago. Praise Jesus!
If you prefer to read every post I ever wrote about Merritt's omphalocele, you can click on the tag word "omphalocele" over on the right column and it will bring up the archives that I tagged. Those posts give a very detailed journal of our experience with an omphalocele "O baby". This page is just a brief overview for those of you interested. I also have a tab at the top of the blog with my email address if you need to ask me a question/comment. :)
We thank God for this miracle and blessing in our lives!
"I praise you because I am fearfully and wonderfully made…" Psalm 139:14
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
"I have said these things to you, that in me you may have peace. In this world you will have trouble. But take heart; I have overcome the world." John 16:33
Miracle Merritt's O life in pictures:
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| Surprise! Baby #3! |
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| One of the first images of her omphalocele ~15 weeks GA |
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| MRI Picture ~21 weeks GA |
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| 4D Ultrasound ~28 weeks GA |
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| Her O (the ball in the middle with the black 'line' in the middle) measuring approximately 6 x 6 cm at 36 wks = 1 week before delivery. |
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| At birth 7/9/12 - weighed 5 lbs 2 oz. Alot of moms ask about seeing their babies at birth. I saw her like this for just a second - my husband snapped this picture - and she was breathing very fast - so they whisked her away to intubate her. But I did get to see her for a few seconds - did not hold her until that night I think (or maybe it was the next day?). |
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| Day she was born on ventilator; vent removed later that day |
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| The big O! hehe ;) Day before surgery |
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| Day before surgery |
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| Coming out of surgery. This was a moment of a huge exhale for me. I hadn't realized I had been holding my breath for several hours that day. It was a very surreal moment to know she made it through surgery. And to see our friend, Russ, holding her hand through it all just made it sweeter. |
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| 5 days old; off vent |
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| 6 days old; first time seeing incision/scar |
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| 1 month old 8/9/12 - weighs 5 lbs 6 oz. |
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| 2 months old 9/9/12 - weighs 7 lbs even |
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| 3 months old 10/9/2012 - weighs 8 lbs 2 oz. |
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| 4 months old 11/9/12 - weighs 9 lbs. 7 oz. Different view of it. |
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| 6 months old 1/9/13. Weighs 10 lbs 14 oz. Sorry- didn't edit this pic and she has drool on her lips and chin. Ha! |
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| 8 months old. 13 lbs. 3/9/13. |
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| 9 months old. One day weight was 13 lbs 10 oz and then within a few days it jumped to 14 lbs 4 oz! |
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| Almost 13 months old! At 12 months she weighed 15 lbs 11 oz (here at 13 months old she is definitely over 16 pounds but I haven't weighed her since her 1 year checkup.) |
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| Alot of O moms ask about the hernia (which is somewhat common when they are fixed at an earlier age), so here is a side-view. It bulges out just a little but not too bad. Definitely not as big as the omphalocele! |
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| Pre-surgery on left and post-surgery on right. January 2014 at 18 months old. Around 18 pounds. |
^ this was the days following her second surgery. The teddy bear was sent to her by another O baby that we have yet to meet. We call it her Smith bear and it put a smile on her face for the first time in days!
^ Her first time to see her new belly. It was a sweet moment when she touched it and noticed that it was different.
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| 2 years old. She has a "typical pot belly" for a toddler and will gladly show you her "belly belly" |
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| At Disney World watching the parade Feb 2015. 2 1/2 years old. No issues other than chronic constipation and acid reflux. :) |
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| Age 3 1/2 years old. First ballet lesson. She is VERY average in size in both height and weight for her class. Even with a ballet leotard, you would never know what she's been through or the fact that she has no belly button! |
