2 weeks old

We are praising God for the small strides in the right direction that Esther is taking.

Thank you all who are praying with us, and those who fasted with us too. What a blessing to be lifted up in prayer, all over the world, by so many!

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Yesterday they started Esther on the oscillator at a low setting, just to get things started. They have been taking an X-ray every 6 hours or so to see what is happening. They change the settings each time. Now they are holding steady and continuing to X-ray her to make sure things are ok. Today, after some suctioning we started to see her chest vibrate. Which means that the oscillator is getting air into the lungs. Also instead of just heart sounds in the chest you can hear air.

They are keeping it gentle trying to get the bronchioles to open up, then they will try to have the lungs fill with air. She still has a long way to go, but we are so thankful to have things go in the right direction.

A few days ago, she had an air pocket by her heart, when they removed the air it filled with blood. They spent a few days debating what to do about it. Esther’s surgeon fixed the cannula’s where the ECMO machine is attached to her. That helped her blood flow quiet a bit but it wasn’t enough. Today they decided to open her up to get the blood out. The cardiac surgeon was very confident that it would be alright. Apparently, right when they cut into her chest blood poured out and her stats instantly were better. The blood was old, meaning that it wasn’t continuing to leak. They put a chest tube in, but there has  been very minimal drainage. Since then her blood pressure and heart rate are better. The numbers for the ECMO are better. Her arms and legs are warmer. She is even peeing. Yay.

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Everytime I walk the halls through the PICU to her room someone is talking about it and how awesome Esther is looking. We are so happy to see small steps in the right direction. Praying so hard that we continue this way. There are still so many things that can go wrong. And she still has to prove herself before they will do surgery to repair the diaphragm.

Esther has been on ECMO for almost 2 weeks now. This is when ECMO circuits start to fail. Which means blood clots, brain bleeds and a few other things that can go wrong. They can get a new ECMO machine but that is risky too since she will be off ECMO while they replace it. We are praying this machine stays good and when the time comes to replace it, that it goes smoothly.

Esther has been on a paralytic for a few days now. It makes me sad not to see her legs move or eyes open. I know once things get better we won’t need it anymore. She is still as adorable as ever.

All of Esther’s stuff.

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The other kids have been doing so well with everything going on. And all the nurses love seeing them when they visit Esther. We have been finding lots of fun things to do around here.

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Day: I’ve lost count

It’s hard to write when things are going bad. But I will.

This last week they have been trying to fill her lungs with air. Her lungs are so stiff from being on life support that they aren’t moving. The problem is they have been trying to expand the lungs with the vent and because it adds so much air at once, her lungs can’t handle it, and she gets a leak.

Tomorrow they will try to expand her lungs with the oscillator. This is a gentle approach. Pushing air into her lungs in tiny amounts and building on that. This is really our last chance to see how her lungs will do before they take extream measures.

Dave and I are both incredible stressed trying to deal with this and making sure that Esther gets the care that she needs to survive.

Tomorrow (Monday) I will be fasting and praying for Esther. I welcome you to join me in this, whether it be from food or something specific. Just spending this time praying for a miracle for Esther.

While I was sitting with Esther yesterday God brought this pleading verse to me. It’s from Mark 4 where Jarius’ daughter is dying. This will be m our prayer for Esther. “Then came one of the rulers of the synagogue, Jairus by name, and seeing him, he fell at his feet and implored him earnestly, saying, “My little daughter is at the point of death. Come and lay your hands on her, so that she may be made well and live.” (‭Mark‬ ‭5‬:‭22-23‬ ESV)

Thank you everyone for your prayers.

Esther’s facebook page will have the most up to date info.

www.facebook.com/esthermaehannon

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1 week down

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.

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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.

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Day 5 and 6

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

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Day 3 and 4

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.

imageNoelle 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.

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