New diagnosis.

We have decided to revive our blog. It’s a great way to let everyone know what is going on.

Also, it was so helpful with everything we were going through with Ezra, and I know it will be just as helpful with our new daughter.

 

So here it is. At our 15 week ultrasound  our Dr. gave us the great news that our baby didn’t have Spina Bifida but….

Really, there’s a but?

He showed us where her stomach was, where the heart should be and the heart was just right of center. She has congenital diaphragmatic hernia (CDH). Basically her diaphragm didn’t form correctly and her organs pushed their way up where her lungs are supposed to develop. As she is growing during pregnancy her lungs won’t develop much. What is there will be blocked by the organs so the the lungs wont function fully.

She will need to be born in Grand Rapids so she can get the immediate care she needs.

Our Dr. went into more specifics about what could happen, but we really won’t know the extent of it until she arrives.

We have spent the last 17 weeks observing her with ultrasounds, researching options, and reading blogs of others parents that have gone through this. Emotionally it has gotten better, we are just waiting to see what needs to be done.

Once she arrives they will stabilize her in the NICU. She will be on a ventilator that will help her breathe and if need a machine called ECMO, which is a lung bypass machine. From our research they say survival rate is about 50% but with knowing about it before hand and having access to the things she will need to survive it might be more like 60-80%.

After about a week or so she will have a surgery to repair her diaphragm and adjust her organs. After that it will be allowing her to heal and have her lungs grow and function.  We don’t know how long it will take but probably a couple months in the NICU. The whole family will be staying at the Renucci House like we did for Ezra.

Once we get through the NICU and she is strong enough to come home things should be a lot less scary at home. She should grow and do well.

This website goes into more detail about her diagnosis.

 

Right now we are asking for prayers. Prayers that our daughter would be strong enough to fight this and peace for our family while we are going through this. We are thankful for those in our lives who can walk along with us during this journey.

We will continue to update the blog. We want to keep everyone in the loop of what is going on.

Our next step is meeting with the pediatric doctors and seeing the NICU. Those appointments are next week down in Grand Rapids.

Many people have been asking what they can do to help and honestly we aren’t 100% sure of what we will need, but we learned a lot from Ezra’s experience and know how willing everyone is to help us. And we are so thankful and blessed for that. We will know more once we meet with her doctors.

We have started a list on Amazon that we will keep updated. Here is the link.

And of course blog posts are more interesting with pictures. Here is our daughter from our last ultrasound at 31 weeks. It came out great. She definitely looks like a Hannon and we can’t wait to meet her.

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Dr. Visits

This week we had the chance to meet with the pediatric surgeon, neonatologist, and see the NICU.

It was nice to be able to talk and meet with them since our baby was diagnosed with Congenital Diaphragmatic Hernia.

The Pediatric Surgeon talked about what they generally do to take care of CDH kids. He explained from my ultrasounds nothing seemed alarming. That we will just have to wait and see. He mentioned that it is great that she is growing normal on her ultrasounds, full term strong babies have a better chance to survive.

He explained what would happen once she is born. The neonatal team will intubate her and then asses what else she will need based on how she is doing. He told us about the different machines and processes they might have to use to help her. Which if we get to those we will explain them.

It was helpful that he told us why they wait to do surgery until she is ready. There is a process that a babies lungs go through after they are born and we want to give her a chance with that.

Even though we knew quite a bit about CDH before meeting with the Dr. it was so helpful to talk to him about it.

We had a little break before heading to the NICU. We were quickly reminded how hard it is to get naps in when a family is sharing one little room. I am sure the kids will get used to it but I am still not looking forward to it.

That afternoon we met with the Neonatologist about how they care for a CDH baby. It was a similar conversation that we had with the Pediatric Surgeon. Just specific to what they do in the NICU.

The social worker gave us a few tips for the NICU and showed us around. When we were there with Ezra, it was before they built the new section of the NICU, we had a chance to check it out.

It was good, but also a little emotional. Just knowing that we have to go through this all over again. Even walking from the hospitality house to the Children’s Hospital was tough for me. Reminding me of everything we went through with Ezra.

I decided to read some more blogs of other parents of CDH babies. Which I should just stop doing because even the babies who do awesome, it still makes me emotional about  it. At the same time I like it because it makes me familiar of what could happen in the NICU.

Some have asked if everyone will be in Grand Rapids with us, and yes, we will all be there. The whole time. We are so thankful Dave has a job that he is able to be with us. He will take some time off and still be able to work when he can.

Anyway, here are some updated pray request.

We are moving into a new home in August. So this month we need to pack up everything, put it in storage, and be out of this rental before June.

We are moving down to Grand Rapids in the beginning of June, my due date is June 17. We want to be in GR so I can deliver their. We need to find a place to stay or an affordable suite hotel that we can stay at until I deliver.

Pray my water doesn’t break early (Noelle was 2.5 weeks early). I don’t even mind if she comes late. As long as I’m pregnant she is healthy. We want her to be strong.

Pray for the kids. It will be a huge adjustment for them. We want to be there for them, but also to be there for our daughter. Which is hard.

We still need a name too.

 

We thank everyone of you for caring for us and taking the time to read these post. I will do my best to keep things updated.

Feel free to comment or e-mail us if you have any questions.

hannon.lauren@gmail.com

 

A picture of Atreyu playing at the Renucci Hospitality House.

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I will figure out how to make the pictures bigger. Right now this will have to do. Lots of blogging things to try and remember from when we blogged about Ezra.

 

Getting ready

This should have been posted earlier, but I broke the blog. Thankfully, Dave knows how to fix those things, so here we are.

 

We have been busy these last few weeks. Trying to get everything ready, having some fun family time, talking with he kids about the baby and the move.

A couple weeks ago we took the kids to the indoor water park. They had a blast. Noelle took to the water right away. She just loved it, a little too much sometimes. She scared me a few times with her bravery but we were right there with her. Ezra loved splashing and playing in the shallow water. I hope this summer he builds more confidence in the water. Once he is comfortable he loved it. Atreyu loved playing too , and could have spent all day there. He hates getting his head wet, but once he realized it’s just bound to happen he got over that really fast. Ezra and Noelle went down the huge slide with Dave.

It was so much fun to spend that time together.

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Last weekend we started packing. Well Dave started packing, he doesn’t let me do much. Which I need because I do not want this baby to come early and there have been some days that scare me with how many Braxton hicks/contractions I am having. It’s hard because I want to help but I know it’s best for the baby to just relax and grow a baby.

Memorial weekend was spent packing up the rest of the house and enjoy the beautiful weather we were having. The movers came this week to move everything into storage, and we headed down to Grand Rapids Friday. We are so blessed to have a place to stay while we wait for the baby to come.

 

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Overall we have a peace from God about everything that is going on. We know He has it handled, whatever may happen. But it is still emotional for us. Thankfully, we are reminded of great promises from God’s word. Here are a few we keep turning too during this time.

When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. (Isaiah 43:2 ESV)

Peace I leave with you; my peace I give to you. Not as the world gives do I give to you.
Let not your hearts be troubled neither let them be afraid. (John 14:27)

Rejoice in hope, be patient in tribulation, be constant in prayer. (Romans 12:12)

 

 

Hanging out

Yup I’m still pregnant. I really thought we would have her sooner but I guess she is comfy and not ready yet.

We have been spending some time in Grand Rapids waiting for the baby to come.  Even though Dave is still working it feels like a mini vacation. Though I much prefer to not be 9 months pregnant on vacation.

We have enjoyed our time here and are starting to settle in. Nothing too exciting to share. But here are some pictures of some of the fun.

Lots of time spent at the park
GR Collage 

We found the boys like this one night.
I asked Atreyu why he wanted to sleep with Ezra and he said
“Well, because I love him sometimes”

sleepy boys

 

And of course I have gotten a little bit of sewing in.
Noelle in her new dress.

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Today I am 39 weeks. I do feel like I could go into labor any moment. This end of pregnancy has by far been my most uncomfortable. The others were so easy compared to her. It’s nice having Dave “work from home” this last week since he has been a huge help to me.

Thank you to those we have talked with and the encouraging things and prayer you have for us. We are thankful that our church has a church plant here that we have been able to visit. It feels like home and are blessed by the people there.

Update about nothing

I guess it’s time for an update.

And yes, I’m still pregnant. 40 weeks and 6 days pregnant incase you were counting. I have no idea when I’m going to go into labor. I’ve been having on and off contractions since about 36 weeks. I was sure I would deliver around 38 weeks. Now I feel like I’m 3 weeks overdue, not just a few days.

We are monitoring her by checking the amniotic fluid every few days. My doctor is fine with me going to 42 weeks before trying anything. I’m hoping to deliver on my own before that. The real issue comes if she decides to poop before I deliver her. We won’t know if that happens until she is here. If she does it would get in her lungs. Praying nothing like that happens.

Anyway, still impatiently waiting to get this craziness started. Thanks for the prayers and messages from everyone. I plan on updating things when things get more interesting.

And here is a very pregnant time at the park.

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Esther Mae is here

Well I guess I just needed to post about still being pregnant to not be pregnant anymore.

Monday morning I had a Dr. appointment to monitor how she was doing. She had enough fluid, but her heart rate wasn’t doing what it was supposed to do. After talking to my doctor we decided that I was far enough along that breaking my water would get things going. Based on her heart rate she should be delivered sooner than later.

I went back to get Dave and get my things together. Then we headed into the hospital to deliver Esther. Around 7PM they broke my water. Because of her constant monotoring, IV and the anxiety of her birth I opted in getting an epidural. My other births (except Ezra’s c-section) I delivered with out anything. I am glad I got the epidural for this delivery. I was comfortable and pain free. When I was ready to push we paged the NICU team to take care of Esther. With pushing during 3 contractions she was out. Whisked away by the NICU team to get intubated. Dave was able to head up to the NICU with them while I finished up with delivery. He said there were over 17 people taking care of her waiting to do what they need to do.

They are taking good care of her and for how critical she is, she is doing pretty good. They have her intubated and started an oscillator on her. The oscillator pulses oxygen into her lungs to simulate breathing. It seems to be going well so far, but it can change at any moment.

They are taking X-rays through out the day to see what her insides are doing. Her diaphragm opening is quiet large and a lot of her insides  are up in her chest. They are hoping that with the lungs taking in oxygen that it will naturally move some things around. The surgeon is hoping to do her diaphragm patch surgery Thursday or Friday. She is wanting to line up he best team for Esther.

From the X-ray they found some air outside of her right lung. Which means her right lung was leaking a little. It is something that will repair itself but the had to put a chest tube in to clear the air. Things look good once they put that in there.

When they pick on her she doesn’t like it. Her silent cries are hard to watch. Even though I can’t hold her yet I can cuddle with her. Not the same but I’ll take it. They started giving her some sedation drugs to keep her calm. Her movements make her work to hard than she can handle.

I set up a Facebook prayer page to do quick updates for her. Feel free to like it. www.facebook.com/esthermaehannon

Also we do have a PO box set up here where we will pick up our mail. The address is PO BOX 2703, Grand Rspids, MI, 49501

 

imageHanging out with Esther.

 

Esther Mae Hannon, born June 24, 5:57 AM, approximately 7#14oz. No height yet.

She is the perfect addition to our family and I can’t wait to take her home.

 

 

Day 2

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.

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

 

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.

 

 

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.

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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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: 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

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 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)

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 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

 

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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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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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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Next

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.