Category: General

This was meant to be posted yesterday, but I was tired and, well, sleep was more important.

Things with Esther are still going well. The ECMO is doing what it’s supposed to do, and giving Esther the break she needs to get stronger. I seem to keep missing the surgeons when they stop by. But they seem optimistic about getting her off ECMO soon. While I don’t want her to stay on ECMO it is also hard to watch her have to fight to survive when she isn’t on it.

We are hoping for surgery next week if she stay stable once she is off ECMO. But things can change at any moment.

Esther is now on dialysis to help get rid of the extra fluid the ECMO causes. She seems to be doing really well on it and having no issues. She is in the PICU floor now since those nurses deal with ECMO and uralysis more than in the NICU. My only complaint is that the room is smaller and Esther has a lot of equipment so we aren’t as comfortable in there. Thankfully that won’t last long.

Esther’s new room.

I wanted to say thank you for all the support and encouragement we have received for Esther. I never thought there would be so many people following along in her progress. Thank you for the cards we have received. I look forward to sharing them with Esther when she is older to show her all the people cheering her on and praying for her.

I shared this on her facebook page. Esther at 1 week old.

We are so happy with how Esther has been doing on ECMO. She is having time to rest and heal her body to prepair for surgery. There are a few times she worked herself up and her heart rate gets up there, but once they give her some sedative she calms right down. Here is a video of Esther awake moving a little bit and having the hiccups. I was told they used to completely paralyze babies on ECMO, but now they just sedate them so they can still move. You learn a few random facts when you sit around for hours.

Monday they are going to start testing her lungs to see how much air and pressure they can hold. Once she passes that test, they will check her heart to make sure it has had the rest it needed. If all of that looks good they can check to see how she handles being off ECMO. Then she will be able to come off of it. So if things go great it will still be a few days, but it’s moving in the right direction. After being of ECMO for a few days they will do the surgery to repair her diaphragm.

Right now I feel like it’s the calm before the storm. The ECMO is doing all the work for her so it’s keeping her pretty happy. Once she is off of it she will have to do all the work with the help of oxygen and many of the other things she was on before ECMO. Then after surgery most kids get worse before they get better. But we know it’s all in God’s hands so I’m trying to enjoy this peaceful time with Esther.

Today was great being able to walk back and forth from the renucci house. And to be able to let the kids, and me, nap. We have the room until Tuesday. We are praying that more space opens up and we can stay.

Noelle enjoying her nap today

Yay being somewhat boring these last couple days. It means that Esther’s body is resting and giving her a chance to heal.

The night she was put on ECMO she responded well to it. They worked on getting levels to where they wanted them. Controlling blood flow, doing a few blood transfusions, running plasma, adjusting medications. All things to help her. But nothing to crazy to stir things up.

These last couple days her blood pressure has been a concern. But they are fixing it and not worried. It’s low and when they give her something for it to help her heart rate drops a little. So now it’s just finding a balance. They are finding a balance with her medication too. She is sedated and they want to find the happy place. Esther worked herself up too much and spikes her heart rate. But it’s better now. There are little scares like that but her dr. is doing a great job keeping things under control.

Noelle hanging out with her new best friend.

The other kids are doing alright. I know they are having a hard time not seeing mom as much, but I’m trying to spend time with them. So prayers for balance and strength.

This recovery for me has been one of the easiest recoveries postpartum. But by the afternoon I’m decently feeling like I am pushing it too hard and am ready for a nice nap. Again just finding balance. It will be easier once we are in the Renucci Hospitality House and I can just walk back and forth to the room to rest but still be close. It seems like they have a longer waiting list to get a room, which we have never experienced with before. We stay there with Ezra appointments and are always able to get a room. It’s frustrating for me but I know God has it handled and we are thankful that we do have some place to stay.

Thank you all so much for your prayers and following along with Esther’s progress.

I thought I could prepare myself for the ups and downs but only on day 2 and I’m a wreck. This morning she had blood pressure issues and once they gave her some medication it seemed to make her much happier. She had an issue with her chest tube not draining but the doctors quickly fixed that.

This afternoon the kids were able to say hi to their sister. The kids love her so much.

I stopped by after dinner to a lot of people in the room. The neonatologist informed me that they needed to start her on ECMO. Her lungs we were working to hard and it was making thigs much worse for her. Once the were set up I had to leave. It took them a couple hours to hook up the machine. Once they were done we were able to talk more with her surgeon about what this means for Esther.

Everything that they were trying before was making things worse for Esther. The oscillator that was breathing and supplying air to her lungs is what was causing tiny tears that were leaking oxygen. Because they needed to have the oscillator on so high it was making things worse. With her being in ECMO, it completely rest the lungs so they will heal and she will get better. The pressure from the oscillator was pushing on her heart also, and starting to cause damage. The ECMO machine will let her heart rest too so it can heal.

They will run test after a few days to see how she is handling being on ECMO. They will test her lungs with a puff of air to see if it’s healing. She can stay on ECMO up to 21 days. But ideally it will be less than 14. Their are lots of risks for her on ECMO. And I hope we won’t have to deal with any of them. So I won’t go over them. Just pray for no complications. Pray she heals miraculously fast. Once she can come off ECMO and can prove herself to be strong with out it they can do her repair surgery.

All the machines keeping Esther alive. The stuff on the right is the ECMO.

The two red tubes are acting as her heart and lungs. Delivering blood to her so she can rest.

Her surgeon is very optimistic about Esther. This will help and she will do great. But it’s still scary and a last resort for her. I know she is covered in prayers and I appreciate it so much. She is doing alright right now. Dave and I stayed with her most the night and she is looking good.

For family stuff, we are still waiting to get into the hospitality house that is connected to the hospital. They have no rooms available and we would really like to be able to stay their as soon as possible. It makes things so much easier to be close to Esther and the other kids.