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.
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.
Esther is 3 weeks and 1 day old now.
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.firstname.lastname@example.org
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.
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.
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)