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After Esther passed away they cleared out all the extra equipment, extibated her and swaddled her.

The kids woke up and Dave brought them to see Esther and we explained what happened.

We needed a break, so we went to have breakfast and played a little with the kids. After that, we went up to Esther’s room to gather her ¬†things. We wanted to get out of the hospital, so we packed up all of our things from the hospitality house and booked a hotel in Grand Rapids.

Atreyu had a tough time saying goodbye to Esther and continued to ask questions about her. It was hard to explain over and over again that Esther had died. The questions are less now and it’s a bit easier to explain. He now just says that he misses her and I remind him that we all do. Ezra asks a few questions, but mostly just repeating what Atreyu has said.

We headed back up to Traverse City the next day and found a place to stay. Before we left, we packed up our house and moved out knowing our new rental wouldn’t be ready until the end of August.

Dave took the week off from work so we could spend time together. We caught up on some missed summer by going to the beach and the drive-in. He’s back at work now and we are starting to get back into our routine.

I am thankful to have Dave around. He has been handling things with Esther. We had her cremated and will have a memorial service in a few weeks. I can barely think about it long enough to plan things. But I will let everyone know when we plan to do it. We will probably be able to stream it online since we know there are many friends and family who would like to be there but can’t be.

We are trying to find a new normal and for me it feels like I am just going through the motions. Time just seems to pass without me noticing. I was going to post this a week ago but somehow a week went by without much notice.

I haven’t been looking for grief support but it just seems to find me. While I was looking at some homeschooling blogs I discovered another mother who had lost a child. She had these post and found I related to much of what she was writing about.

Here is her post called How to help a grieving friend

We are able to receive mail at our new house even though we haven’t moved in yet. Our new mailing address is,

Hannon, 777 Fox Hunt LN, Traverse City, MI 49686

We still have our PO Box and have been getting our mail from there and soon it will be forwarded. Thank you for all the thoughtful cards you have sent. I tear up reading them thinking of all the people who care about us and Esther.

I probably won’t be posting much anymore, but thank you for taking the time to follow along in our journey.

 

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Esther’s last days

It has taken me a while to get myself together to right this post, and it is still hard.

The last few days the doctors were trying to wean Esther off of ECMO. It was her second circuit and it would last long before getting clots. And she needed to adjust her body do she could survive off of ECMO. They tried to lower the flow and then completely clamp it but she only lasted a couple minutes before her heart beat dropped to 30.

The next option was to lower the flow a little each day. Each day they went down a little bit. She wasn’t doing great but she didn’t seem to get much worse. Her lungs still weren’t doing the work they needed for her to get off ECMO. Her blood gasses, which measure how acidic her blood is and ph levels amoung a few other things, were slowly getting worse.

With the flow of ECMO slowing down it was more susceptible to develope clots. There was a clot the went into the dialysis machine but it continued to run for a little bit.

Saturday things continued to get worse but Esther was hanging on. We said goodnight to Esther and tried to get some sleep. At about 2 in the morning the nurse called to say that the dialysis machine quit working but they would replace it in the morning. Then at 5:20 they called and said the ECMO circuit was crashing and Esther wasn’t doing well at all.

I ran to her room to be with her. They were giving her epi for adrenaline but we knew it wouldn’t help. Then they gave her morphine to help her be comfortable. About an hour later she passed away.

They extibated her and took off all that they could. She was a very beautiful baby.

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Hanging on

Esther has recovered from surgery well.

On Monday we meet with the doctors to discuss these final attempts to help her. They talked us through trying to wean off ECMO. And also what would happen if we couldn’t. They kind of gave us a deadline but we let them know that we are fine with giving her a fighting chance and if she passes while fighting we are alright with that.

Each day they are trying to wean her off ECMO. The ECMO circuit is at it’s lowest settings for support. They prep her to clamp off the ECMO so Esther has to support herself. She is on the ventilator and that is giving her O2. Esther’s left lung is practically non existent, and her right lung is really weak and damaged. We need her right lung to support her and the doctors are convinced that it can’t. It’s hard for us because it seems that each day she is getting a tiny bit stronger. We just don’t know if it will be enough.

Tuesday they clamped her off ECMO and she crashed really quick. They were going to try again today with her on the oscillator instead of the vent. Once they switched it, Esther did not like it and they put her back on the vent. They didn’t have a chance to test her off ECMO.

Today Esther has been sleepy. It’s probably a result of her working harder and have carbon dioxide build up in her. Still praying she is strong enough.

It has been a hard week for us.

Esther today after she had her hair washed.

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Surgery day

Today Esther had surgery while on ECMO.

She had a good night, her chest tube did not bleed at all. When her surgeon came in this morning she was very surprised at how well Esther was doing.  Her doctor said whatever we did last night, or prayed, worked. Praise God. Hopefully God continues to work and heal Esther!

They spent the morning prepping her. She needed to be on the ventilator for surgery and she handled that transition well. They headed down around 9 and took about 45 mins to set up. During the surgery they moved all her insides down and put a patch where the diaphragm would be. It all took a little over 3 hours. The doctor told us that she had everything up in her chest. Her stomach, intestines and part of her liver. Having her liver in her chest is a severe case of congenital diaphragmatic hernia. While your intestines and stomach are soft the liver is hard and makes lung growth much more difficult. Her diaphragm was mostly gone. They use a gor-tex patch where her diaphragm would be. Normally, as a child grows the skin attached to the patch will grow with it. Since Esther had such little diaphragm she will probably need another surgery as she grows.

We are very thankful with how well the surgery went for Esther. 24 hours after surgery we are on watch for bleeding. She is still on blood thinners so it is a high risk. In a day or 2 they will aggressively try to get Esther off ECMO.

Right now she still has the support of ECMO and I am praying this will make recovery from surgery easier. All on hopes that she can seamlessly come off of ECMO soon.

Please continue to pray. Dave and I had such peace today. While we are so concerned for our daughter we also feel so comforted by God and find such peace in that.

Esther, before she went down for surgery.

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Day 22

Esther is 3 weeks and 1 day old now.

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Thank you everyone for your notes and prayers for us. I know some have asked for our mailing address in Grand Rapids to cards. Our address is: Hannon, PO box 2703, Grand Rapids, MI 49501

Today was a busy day trying to prep Esther for surgery. They tried to wean her off the ECMO circuit. On ECMO they can control everything about the circulation of her blood. From the flow to the temperature of the blood. How they wean her is by going down on the blood flow, which makes her heart start working. Once they have the flow low enough they clamp the circuit off and see how she does. They watch her numbers (blood pressure, O2 among other things) and see if she can handle being disconnected. She was able to get pretty low flow but not all the way. So she is still on ECMO.

Also yesterday they added a new chest tube. They did an ultrasound of her right lung and saw a substantial amount of fluid there. Even though they do X-rays often, you can’t see fluid on an X-ray. Once they placed the chest tube they pulled out 120ml of old blood. They did a chest X-ray and saw an improvement of her right lung. Which is great! Because she is on the blood thinners the chest tube kept draining blood. This might have contributed to her not being able to wean off of ECMO. Because of the blood loss they did not want to operate on her until it stopped. The doctors decided to stop her heparin and start a medication that helped with clotting. That has stopped the draining and she seems to be doing great.

She is scheduled for surgery at 9 am, Thursday morning. The surgery is to bring down her internal organs and patch the hole in her diaphragm. This doesn’t fix the problem with her lungs. We chose to do this surgery now so that she has the support of ECMO to recover. It is very risky to preform surgery while on ECMO. She is on blood thinners which could cause massive bleeding. After surgery, Esther will probably get worse before she gets better. Please continue to pray for Esther. We know God has been here with us and helped Esther in so many ways. Pray that He continues to heal her.

I will be updating throughout the day on Esther’s facebook page. www.facebook.com/esthermaehannon

i do try to explain what is going on, but if you have any questions you can email or message on facebook. Hannon.lauren@gmail.com

 

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