Our little girl Esther's CDH story: 6 months old

Friday, October 11, 2013

6 months old

We think about Esther every day. I get to see Josie smile, laugh, coo, babel, cry, learn how to poop on the toilet (can you believe she is doing this already) and roll over and over again. She gets so excited for food. It makes me long more and more for this with Esther. I wonder what she would have been like? What would make her smile, laugh, giggle and what milestones would she have achieved at 6 months? What would we be facing today if we would have taken her home so medically fragile? What if we never even knew of CDH because Esther would have never been diagnosed with it? Would we love Josie as much as we do now if we hadn't known what it was like to loose a baby? I did not have to face that ugly fear monster of having another CDH baby while being pregnant with Josie. I think I just knew God was going to bless us again, but this time with a healthy one. But lately, I keep seeing it all over. CDH families having another CDH baby. I have followed 5 stories this summer with this happening. Most have made it, but some haven't. We have a 2% chance of having another CDH baby. That is almost the same percentage as any of us. Every 1-2500 babies is a CDH baby. 50% of CDH babies live, 50% die. It makes me scared.

No, we are not pregnant, although we both long for another one right now because we are on cloud nine with Josie and absolutely love being parents. I just have a bigger understanding of Love now that we have lost Esther. I can't imagine how much it hurt God to take Esther back. He hurt so badly for us. He knows Love more than we can imagine or comprehend. I want to know this Love more and more every day.

This last weekend Jason and I ran the Bellingham Bay marathon and half marathon. Jason did the full 26.2 and I did the 13.1 mile. We did it for Esther. To carry her memory in our hearts. To endure a small fraction of what she went through. So we can feel some pain and go to God for strength. To feel close with her and what Christ has done through it all. Jason's goal was to beat the 4 hr mark. He missed it by 3 min. We had a horrible wind and rain storm that weekend. I am so proud of him. Me on the other hand, I struggled and grumbled the whole time. I am not fast. I am 2 min per mile slower than I used to be. My body hurts. How come I can't bounce back? I am almost just as slow running this year as I was last year at 12 weeks pregnant. Do you see the pattern? Me, me, me, me!!!! After we were done running that weekend I couldn't believe we were going to have do the same thing the next weekend in the Leavenworth Octoberfest half marathon.

We got the opportunity to run the Octoberfest half marathon the following weekend with one of our favorite NICU night nurses Michelle. We spent the weekend getting to know her family as well as her getting to know my big sis Julie and her family. We talked about Esther and our memories and we all got to raise CDH support and awareness in Esther's name. Before we started the race, 3 ladies saw our shirts and asked us about it. I briefly talked about our daughter dying of CDH. Tears filled their eyes. They couldn't believe it. We reminded them that it was okay, she was a huge blessing and here we are carrying her memory on together with our NICU nurse. God met me there. Right in that moment. Its not about me, its about Esther and more importantly, God wants to do this with us. Who cares what time I get!!! I was in such awe during the race and the beautiful surroundings. My body felt great the whole time. I ran the whole race without walking, except up one large hill and at water stations. I finished with a smile and I felt Esther and God the whole time.

Not sure what is next for us. We want to continue helping CDH families in their journeys, financially, emotionally and spiritually. I have been in contact with three Washington families over the summer who have had CDH babies. 2 of the 3 made it home with their babies and continue to have ongoing CDH care (as most CDH babies do). The other family is set to go home in a few weeks. We celebrate and rejoice with all of them. Two families that I know from Washington that have also lost their first baby to CDH (one lost her first 2 babies to CDH) are also having healthy babies. One is about a month younger than Josie and the other lady is pregnant right now. We rejoice in this!!!

I will leave you with some pictures of our first 6 months with Josie.

She wakes up smiling like this!!!

She doesn't smile all of the time

Rhonda Holtrop

5 comments:

abigail louiseOctober 12, 2013 at 8:53 AM
so amazing. darling darling baby!
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MirandaOctober 12, 2013 at 5:15 PM
" I can't imagine how much it hurt God to take Esther back. He hurt so badly for us. He knows Love more than we can imagine or comprehend"
You are amazing Rhonda. I needed to read this so much tonight. I am struggling. Struggling so badly these days, I want Grace back. I want the baby I miscarried last month back. I hurt so badly these days. Thank you for the reminder that He hurts too and that it's not all about me and I know I just truly need to lean so much more onto Him.
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UnknownOctober 13, 2013 at 8:58 PM
Josie looks like her daddy! So adorable - thanks for sharing. :)
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UnknownNovember 10, 2013 at 1:41 AM
Rhonda & Jason
How wonderful to see these photo's of "Josie"; she looks like both of you. Truly amazing the strength ya'll are sharing....... Amen
Love Always
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stephanie jDecember 3, 2013 at 4:18 PM
I too lost a baby girl to cdh. Her name was Faith. She lived for 12 days and died january of this year. I am expecting too, my rainbow baby, a boy in february 2014. Thankfully he is healthy. Thanks for sharing your story, so sorry for your loss.
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What is Congenital Diaphragmatic Hernia (CDH)?

A congenital diaphragmatic hernia (commonly known as CDH) is an opening in the diaphragm (The dome-shaped muscle that separates the chest cavity from the abdomen.) It occurs at approximately 9 weeks gestation, when the diaphragm, for an unknown reason, fails to close completely. The hole allows the abdominal organs to push into the chest cavity. CDH is a life-threatening birth defect because it limits the growth of the lungs.

CDH occurs in every 1-2500 live births in the United States. Approximately 1,800 babies are born each year with CDH. Approximately 50% of all babies born with CDH die. Luckily in Seattle where were told we have a 80-85% chance they will survive. CDH happens just as often as Spina Bifida and Cystic Fibrosis yet many have never heard of CDH. To explain it a little further:

The diaphragm is a muscle that separates the abdominal cavity from the chest. It’s a divider. At 8-12 weeks gestation, depending on what you read, this muscle develops and comes together, as it should. But sometimes it doesn’t. Nobody knows why, it is random. There isn’t enough evidence to suggest that it is genetically destined to happen, and it isn’t because of anything the mother or father did or didn’t do. The diaphragm simply forgets to close. In 90% of diaphragmatic hernia cases, this happens on the left side. It’s also more common in girls.

This happens at the same time that everything inside of the fetus is forming and finding their places, and if there’s a hole, sometimes organs will find their way through it. Sometimes the organ involvement is minimal, sometimes not. In any case, if there is anything that is supposed to be in the abdominal cavity but is incorrectly located in the chest cavity, it takes up valuable space that the lungs need in order to fully develop.

When a baby with known CDH is born, she has to be intubated and placed on a ventilator immediately. Crying can make the hernia worse. If all techniques of getting her adequate oxygen that way are exhausted, she’ll be placed on ECMO, which is a whole different monster. Once a baby with CDH is placed on ECMO, his chance of survival drops to 50%. ECMO comes with its own set of complications (and ECMO is a complication in and of itself), so we’ll focus on that if things get to that point.

The thing about hernias is that they don’t repair themselves. They either get fixed or get worse. Surgery is necessary to repair the hernia: Making an incision below his ribs, moving his organs into place, and connecting the tissue of the hernia (or repairing with a patch if there is not enough tissue to connect). The surgery itself is pretty straightforward, but the issue lies in his ability to maintain adequate oxygen levels.

Even if you move the organs back into place, even if the hernia is repaired perfectly…the lungs still missed out on valuable development while in the womb. The months following surgery are dedicated to recovery from surgery as well as ensuring proper oxygen levels. The average NICU stay after birth is 2-3 months. Babies with CDH may come home with forms of oxygen assistance if everything else is stable enough.

Our little girl Esther's CDH story

Rhonda and Jason

Friday, October 11, 2013

6 months old

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