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New diagnosis.

We have decided to revive our blog. It’s a great way to let everyone know what is going on.

Also, it was so helpful with everything we were going through with Ezra, and I know it will be just as helpful with our new daughter.

 

So here it is. At our 15 week ultrasound  our Dr. gave us the great news that our baby didn’t have Spina Bifida but….

Really, there’s a but?

He showed us where her stomach was, where the heart should be and the heart was just right of center. She has congenital diaphragmatic hernia (CDH). Basically her diaphragm didn’t form correctly and her organs pushed their way up where her lungs are supposed to develop. As she is growing during pregnancy her lungs won’t develop much. What is there will be blocked by the organs so the the lungs wont function fully.

She will need to be born in Grand Rapids so she can get the immediate care she needs.

Our Dr. went into more specifics about what could happen, but we really won’t know the extent of it until she arrives.

We have spent the last 17 weeks observing her with ultrasounds, researching options, and reading blogs of others parents that have gone through this. Emotionally it has gotten better, we are just waiting to see what needs to be done.

Once she arrives they will stabilize her in the NICU. She will be on a ventilator that will help her breathe and if need a machine called ECMO, which is a lung bypass machine. From our research they say survival rate is about 50% but with knowing about it before hand and having access to the things she will need to survive it might be more like 60-80%.

After about a week or so she will have a surgery to repair her diaphragm and adjust her organs. After that it will be allowing her to heal and have her lungs grow and function.  We don’t know how long it will take but probably a couple months in the NICU. The whole family will be staying at the Renucci House like we did for Ezra.

Once we get through the NICU and she is strong enough to come home things should be a lot less scary at home. She should grow and do well.

This website goes into more detail about her diagnosis.

 

Right now we are asking for prayers. Prayers that our daughter would be strong enough to fight this and peace for our family while we are going through this. We are thankful for those in our lives who can walk along with us during this journey.

We will continue to update the blog. We want to keep everyone in the loop of what is going on.

Our next step is meeting with the pediatric doctors and seeing the NICU. Those appointments are next week down in Grand Rapids.

Many people have been asking what they can do to help and honestly we aren’t 100% sure of what we will need, but we learned a lot from Ezra’s experience and know how willing everyone is to help us. And we are so thankful and blessed for that. We will know more once we meet with her doctors.

We have started a list on Amazon that we will keep updated. Here is the link.

And of course blog posts are more interesting with pictures. Here is our daughter from our last ultrasound at 31 weeks. It came out great. She definitely looks like a Hannon and we can’t wait to meet her.

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3 Comments

  1. Bonnie Blissett says:

    Thanks so much for sharing. You are doing a wonderful job with Ezra.

  2. Karen S. says:

    You are in our prayers. We hope your little girl is on the part of the spectrum where the outcome is eventual good health. Just know we love you and want to support you in any way we can. Love and Prayers, Karen and Scott

  3. […] It was nice to be able to talk and meet with them since our baby was diagnosed with Congenital Diaphragmatic Hernia. […]

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