Quiet weekend

We are thankful for a quiet weekend. Esther was hopfully getting strong and we enjoyed a less dramatic weekend.

Things pretty much stayed the same. A few times they have weaned her off her paralytic so she could have some movement back. We have enjoyed see her beautiful eyes again. Also having her little fingers wrap around our finger. She has enjoyed blowing some spit bubbles too.

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They went up on her oscillator a tiny bit. Thankfully no leaks in the lungs. Which is what got us into this crazy mess to begin with.

Her ECMO circuit wasn’t running as smoothly. The blood gets fibrous in the circuit which can lead to blood clots. This and a few other problems happen around 2 weeks on ECMO. Because they need to do surgery on ECMO they didn’t want to risk it clotting during surgery. She is on day 19 of ECMO and 20 days old.

Since they switched circuits today they are giving her a few days to adjust and want to do surgery on Thursday. Surgery won’t make her pulmonary hypertension better but it gives her the extra support of ECMO to recover. She still needs to improve a bit before surgery. Things like blood flow, her heart getting stronger, and a few other stuff. But the surgeons seem ok with doing the surgery.

The hard part for us is that are limiting Esther to 28 days on ECMO. If she can’t come off by then, they don’t think she has a chance. That’s July 23 in case you are counting. These next few days will be hard for Esther and we appreciate your continued prayers.

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Day 15 and 16

Wednesday Esther continued to improve. She is still on the oscillator and we are seeing vibrations to bellow her belly button. Her stats continue to look great. The doctors get most excited about her oxygen and carbon dioxide numbers on the ECMO machine. Having these numbers high means that her body is doing what it is supposed to do.

Since the oscillator allows small puffs of air in, it is not filling the lungs but working the bronchioles and getting down the the areoles. Since a few days ago they were not opening at all we praise God for the progress she is making. Again she still has a long way to go. We are wanting to meet with her surgeons soon to talk about her progress and see if surgery will help her.

Thursday we went up on the wave length of her oscillator. Which allows more air or go into her lungs. She seems to be tolerating it all day, but we still need to figure out where we are going from here.

A few days after Esther was out on ECMO, the doctors decided that she also needed to be on dialysis. Honestly I wish we would have no more about it to challenge the doctors on it. We feel like it is causing more problems than it is helping her. And now she is dependent on dialysis and there is nothing we can do about it. She isn’t peeing because her kidneys aren’t working. They believe this is from the fluid build up around her heart and the lack of blood flow. If her kidneys don’t work she won’t survive. Right now dialysis is running through the ECMO machine. They cannot do dialysis on her without the ECMO until her diaphragm patch heals. Basically her kidneys need to start working again or there is nothing they can do for her.

Dave has been spending a lot of time with Esther. He understands and ask better questions than I do when her doctors come around.  He has had some good conversations with the doctors. I feel we understand Esther’s care better and wish we would have known more in the beginning. But as any mom pregnant with a child who has a birth defect, you never know how severe things will be until they are born.

We are starting to see her lungs open up and we pray God will continue to work on that. Also for her kidneys to miraculously start working again.

Also I wanted to let people know even if you don’t have facebook you can still go to her prayer page and see the updates we post. Just go to www.facebook.com/esthermaehannon and you can see everything. (Dave just told me that and I had no idea. I figured other people might not know either)

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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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