Category: CDH

This week we had the chance to meet with the pediatric surgeon, neonatologist, and see the NICU.

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

The Pediatric Surgeon talked about what they generally do to take care of CDH kids. He explained from my ultrasounds nothing seemed alarming. That we will just have to wait and see. He mentioned that it is great that she is growing normal on her ultrasounds, full term strong babies have a better chance to survive.

He explained what would happen once she is born. The neonatal team will intubate her and then asses what else she will need based on how she is doing. He told us about the different machines and processes they might have to use to help her. Which if we get to those we will explain them.

It was helpful that he told us why they wait to do surgery until she is ready. There is a process that a babies lungs go through after they are born and we want to give her a chance with that.

Even though we knew quite a bit about CDH before meeting with the Dr. it was so helpful to talk to him about it.

We had a little break before heading to the NICU. We were quickly reminded how hard it is to get naps in when a family is sharing one little room. I am sure the kids will get used to it but I am still not looking forward to it.

That afternoon we met with the Neonatologist about how they care for a CDH baby. It was a similar conversation that we had with the Pediatric Surgeon. Just specific to what they do in the NICU.

The social worker gave us a few tips for the NICU and showed us around. When we were there with Ezra, it was before they built the new section of the NICU, we had a chance to check it out.

It was good, but also a little emotional. Just knowing that we have to go through this all over again. Even walking from the hospitality house to the Children’s Hospital was tough for me. Reminding me of everything we went through with Ezra.

I decided to read some more blogs of other parents of CDH babies. Which I should just stop doing because even the babies who do awesome, it still makes me emotional about  it. At the same time I like it because it makes me familiar of what could happen in the NICU.

Some have asked if everyone will be in Grand Rapids with us, and yes, we will all be there. The whole time. We are so thankful Dave has a job that he is able to be with us. He will take some time off and still be able to work when he can.

Anyway, here are some updated pray request.

We are moving into a new home in August. So this month we need to pack up everything, put it in storage, and be out of this rental before June.

We are moving down to Grand Rapids in the beginning of June, my due date is June 17. We want to be in GR so I can deliver their. We need to find a place to stay or an affordable suite hotel that we can stay at until I deliver.

Pray my water doesn’t break early (Noelle was 2.5 weeks early). I don’t even mind if she comes late. As long as I’m pregnant she is healthy. We want her to be strong.

Pray for the kids. It will be a huge adjustment for them. We want to be there for them, but also to be there for our daughter. Which is hard.

We still need a name too.

 

We thank everyone of you for caring for us and taking the time to read these post. I will do my best to keep things updated.

Feel free to comment or e-mail us if you have any questions.

hannon.lauren@gmail.com

 

A picture of Atreyu playing at the Renucci Hospitality House.

I will figure out how to make the pictures bigger. Right now this will have to do. Lots of blogging things to try and remember from when we blogged about Ezra.

 

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.