The Redman Family

Good afternoon,

I'm here to bring you guys a pretty positive update today, with only minor setbacks.

Last update our biggest struggle was Annabelle's HD line for her dialysis. Well, the line continued to give us trouble through the weekend, and it was decided on Saturday that the team would like to replace the line. At first, I was completely against it seeing as switching legs didn't seem like a good option to me. But after talking with the IR team, they discussed moving the line from her leg to her chest, this line would run parallel to her central line and would be much less problematic. Again, I never want more holes than there needs to be, but this seemed like a pretty good option since her dialysis machine was spending more time off than on.

Annabelle was taken down to get the line replaced around 11:30 and was back in her room settled on CRRT by 2. She did great and the line placement went as expected. Since the placement of the line the CRRT machine has been running great with no alarms or down time. Now that the line is out of her leg Annabelle has been much more comfy and able to relax a bit more since she is able to move both her legs freely. The team did check her leg for any clots caused by the HD line, and she does have 2, one that is inclusive and one that is non-inclusive. The plan is to put her back on blood thinners and hopefully that will help break down the clots in the leg.

Since her new line was placed and her circuit has been more stable, I was able to hold her at the bedside this week. It's not for very long and I'm not sure she even likes it, but it does some good for this momma's heart. Being able to be close to her again after such a long time watching her lie in a bed paralyzed was amazing. She’s coming off a lot of sedation and with every day I can see more and more of her personality coming back. We were able to play with PT and OT this week and working on moving our arms and legs again. Sometimes it feels like we are back at step one, but they remind me daily that she is so much stronger than when we first got here and it's only going to get better.

Our new goal this week has been to start trialing Annabelle at a lower rate on her ventilator to prepare her for extubation. She has been doing CPAP trials for the last 2 days and doing really well all things considered. They were able to wean her rate down and her pressure support, which allows her to take more of her own breaths and work out her lungs. Due to being intubated for a month now she has lost a lot of muscle tone, along with having her chest open for 3 of those 4 weeks. It is going to take her a little longer to get back to her baseline which we already expected. We are proud of how much work she is doing but understand it can be a lot all at once so we will continue to take things at her pace and hopefully, we can get this tube out soon.

Her PD line is still healing, and we do have to wait for the wound vac to come off her chest before they are comfortable trialing PD again. The surgical team should be up to replace it tomorrow and take a look at the skin and staples. If everything is looking good, we could have it off in as soon as a week. Once her chest is healed enough, we can start thinking of taking her off CRRT, getting PD going and getting her listed for kidney transplant. We were informed that the team expects her to wait about 1 to 2 months for a kidney. A kidney transplant is also a much simpler procedure then a heart transplant. The hope is that she will be transplanted, peeing, and extubated within 5 days of surgery. It feels like such a long ways away but I know once everything starts falling into place it's going to go so fast.

Since Annabelle has gotten her new heart going home has been very heavy on my heart. I know we are still probably 9 months out at the least from being able to go home but we are closer than we have ever been. With the plan to bring her home as soon as possible we have been working on getting our home ready. Due to water damage this spring we had to pull up the flooring in our basement which led us to finding a cracked foundation and now we have a wet basement anytime it rains. We have had 2 different companies come give us quotes for the repair which now also included some concern about the structural integrity to our garage. With only Luke working for the time being our funds for a project like this are extremely low, but we know this needs to be fixed before we can bring Annabelle home.

I bring this up because I know there are programs, foundations, and assistance available for these types of things, but I have no idea where to start. If anyone has a lead on where I could look, or even a family member or friend who could give us a quote to make sure we are on the right track with the amounts we are being given I would be so grateful. We have contacted two companies and gotten 4 different quotes for things they could do. I have also tried reaching out to Anoka County and am waiting to hear back. I know we have an amazing community behind us that has got to know of some way we can get help. We want to make sure everything is safe and sound when we bring this baby girl home.

If you know anyone, please feel free to let me know so I can reach out or they can reach out to me. Our house is in Anoka County, Ramsey MN.

For now, we keep taking it day by day, thank you for all the love and support and help. We appreciate all of you and pray that Annabelle can be at home with us soon.

Love, Sidney & Luke

Good afternoon, everyone.

It's about time for another update. There has been so much happening around here and honestly, I just haven't had the energy or desire to update as frequently as I normally would. In my last update I left off with a long list of things to do and unfortunately, we really haven't made many moved towards a lot of them.

Starting off with our one positive, on Monday the surgical team was able to close Annabelle's sternum completely and place a wound vac over the open skin. She has been closed for 4 days now and had her first wound vac change this morning. The skin is healing great, but we do not know if the surgeon will be able to completely close the skin yet or not. They will continue to do bi-weekly dressing changes to see how the skin looks and if enough new skin grows and the surgical team feels confident, they will look into closing the skin late next week. If not, they will let the skin come together and heal on its own.

Along with the sternum being closed they were able to remove all three of Annabelle's chest tubes. The berlin canula sites have also been closed and are healing amazing. Her skin has been doing so much better since the transplant and the team is optimistic that her scars will heal very nicely.

Now let’s get into everything else that's been going on.

Since the transplant Annabelle has had issues with her blood pressure. Her MAP (mean arterial pressure) should be between 55 and 70 but at times she had been as low as 35 or as high as 120. These swings in her blood pressure happen when she is being assessed but also were happening randomly with no external stimulation. The team was struggling to keep her within her goal MAP and were constantly going up and down on her EPI and NOREPI. It was discussed many times at rounds what could be causing such drastic swings but there was no clear answer.

Next Annabelle started experiencing huge temperature swings, being as low as 34 to as high as 38 in a matter of a day. The team worried that she might have some kind of infection and started treating her with antibiotics and steroids again. While none of the cultures have come back positive, the clinical appearance of Annabelle has improved so I feel like I can safely say something was bothering her. She also have large parts of the day where she was thrashing, delirious, and upset. These episodes meant more sedation and more drugs to try and capture her to keep her safe.

Yesterday afternoon after an extremely tough day managing her blood pressure MAP and temperature the team decided to put on EEG again to monitor Annabelle's brain during these episodes to make sure there was no seizure activities. The EEGs were on for about 8 hours and the Nuro team confirmed today that they saw no seizure activities during the episodes that they captured. They did see some delay in her brains response but that is to be expected with all the drugs she is on and how sick she has been her whole life. They did mention that once she is in a stable spot before we go home, they will want to do an MRI to check that they haven't missed any brain injuries.

Our biggest issue this week has been the HD line that they are using to do her dialysis. Due to her thrashing and being upset quite often this week the line has been having problems clotting off. The issue with this is there is no other way to run dialysis without this line. The team did try to use her PD, but it is believed that the suction from the wound vac on her sternum caused the peritoneum to pop and leak PD fluid into her chest cavity. It is recommended that the peritoneum is given at least 2 weeks to heal before trying to be used again. We did turn down the suction on the wound vac in hopes it wouldn't cause any additional holes in the time being.

In the last 4 days her dialysis machine has gone down 5 times. Each time she is off dialysis for around 2 to 3 hours. This causes problems with her becoming too fluid positive since she doesn't pee. When she is fluid positive her blood pressures are harder to maintain and there is more pressure on her heart which is still having some difficulties on the right side. All these things alone are manageable but when everything is happening at once it becomes a daunting task. The team is doing their best to keep the line healthy and running but each time they have to restart the machine there is a risk of losing the line access completely. I have talked with the team and made my wishes clear that I do not want another HD line placed. Annabelle has very little access left and her only place still open is her right leg. The issue with her right leg is due to the pulmonary embolism that happened last year her tissue and blood flow to that leg have been severely affected and the likelihood that the HD line would last is low. I don't see any good coming out of trying to place a line in that leg when we know it is already compromised.

So, for now we will continue to TPA the line and try to keep it healthy as long as we can while we wait for the PD line to heal and for Annabelle's chest to close. We ask for prayers that Annabelle can remain stable to continue to heal from her transplant and get her blood pressure and sedation to a good spot. We pray that she remains safe and that we have no more risks of brain injury.

Love, Sidney & Luke

Good evening everyone,

I'm here to share another update, please bear with me while I try to organize all the things that have happened this weekend.

Last updated I had mentioned that her chest was scheduled to be closed. Well big shocker that didn't happen. The team was not comfortable attempting to close her chest with her numbers being high. They also did an echo that showed decreased function of the right ventricle. While an echo on an open chest in difficult in of itself, the decreased function had the team extremely worried. We were told they were worried about rejection in the heart and wanted to get her scheduled for Cath lab and biopsy asap.

Normally post-transplant kids will get a Cath lab with biopsy to check for rejections at 2 weeks. Due to everything weird going on with Annabelle the team decided to move the Cath lab up to Friday. We were told the results likely wouldn't be back till Monday but that they would start her on a high dose steroid and raise her immunosuppressants to help fight any rejection that could be happening.

The Cath lab went well, Annabelle remained stable and comfortable the whole time. Her pressures in the heart were more stable than the team expected and gave them the impression that we might not be dealing with sever rejection. There was more concern that the right ventricle was being compressed due to fluid/the chest wall along with some possible rejection. The Cath lab also showed that the left ventricle, left atrium, and right atrium all had great function. The team continued to treat as if there was rejection just to cover all bases and keep Annabelle safe, but we were relieved to know there could be another answer for why the right ventricle was struggling. Side note, because I know the average person is not super well versed in all things pediatric transplant. Rejection can be treated. It can get worse, and it can be better. At any time in a transplant recipient’s life they can deal with rejection. Rejection is measured in stages, 0, 1R, 2R, and 3R. Obviously we would love to never deal with rejection but that likely isn't going to happen. Annabelle also is a bit of a complicated case due to her kidney failure. With a normal heart transplant patient, the team would use three immunosuppressants, Thymoglobulin, Tacrolimus, Cellcept. Due to her needing a kidney the team held the Thymoglobulin because that will be used with the kidney transplant. If they were to use Thymoglobulin, we would have to wait for up to six months to get a kidney transplant. They teams hope is that we can manage Annabelle's antibodies with only Tacrolimus and Cellcept until she receives her kidney.

Due to them holding the Thymo everyone has been extremely on top of all her levels, but I also believe that this is why everyone is so jumpy about the decreased function in the right ventricle. While we are so grateful to have everyone watching her closely it has caused increased stress for us. We knew that this transplant was only the beginning of a very different journey, but I don't believe we truly understood how traumatizing the first 6 months of Annabelle's life were to us. Seeing her paralyzed and intubated with alarms going off by the minute and at least 10 people in and out of our room is a lot. Simply put its a lot of everything all at once.

Over the weekend while we waited for the results to come back, we got word that the preliminary results of the biopsy that was done showed 1R rejection. We were told this wasn't the final results but either way they would keep her on steroids an extra 3 days and keep working on the immunosuppressants. This wasn't the news we wanted to hear especially since we know her crossmatch was negative, and she clinically has improved since transplant. I took some time to talk with her transplant doctor and he explained that this was very treatable, and he would tell me if we needed to worry. He was very open and positive that this level of rejection is manageable and could very likely be due to the fact she didn't receive Thymo after transplant and that she is on CRRT for dialysis.

While the news of the possible rejection hit hard, I was reminded that clinically Annabelle looked great and was improving daily in her levels, vent support, and fluid balance. I took all these as small wins and tried to let go of that fact that we still had a very long way to go before we would see her awake again.

This morning at rounds there was talk of trying to close her chest as long as her pressures allowed, and she tolerated it. Around 11am they were able to close part of her chest. She experienced a couple hours of lower blood pressures but with fluid and a little EPI she was able to level out and has been doing great. They also removed her paralytic, and she has been morning around a bit more. Still very sedated but it's been nice to see her twitch a hand or foot every once in a while.

 The final results from the biopsy also came back confirming the 1R rejection. Hearing that news this afternoon did sting a little but after the talk with her doctor on Sunday I feel like we did everything possible to treat it. I also see that she is continuing to improve clinically so worrying about it helps nothing.

Our next big steps are to get her chest closed completely, get back to using our PD drain for dialysis, remove her breathing tube, and turn off all sedation. That is a LOT of big steps, and we will likely be working on them for a month or so but for now we are happy to take the small steps forward.

Please continue to pray for Annabelle and that she can keep getting stronger and healthier. We will update when more things happen.

Love, Sidney & Luke

Hello everyone! We are one-week post-transplant and if I'm being honest, it has been quite the roller coaster. I will start off by saying Annabelle is fine and stable. The team is just experiencing some roadblocks and difficulties that weren't expected, and we are still trying to get answers. Annabelle has been experiencing lower blood pressures since coming out of the OR last week. Something we were told was very normal and to be expected after such a large invasive surgery. She has been on many different blood pressure medications to help regulate her and thankfully that was working well. On Monday she started dropping her BP really low and the team was concerned why she wasn't able to maintain better. Her chest is still open, and they were pretty aggressively pulling off fluid with her dialysis. Both of these things could have been contributing to the fluctuating BP. She then started having higher core temperatures which lead the team to start checking labs and looking for infections.

Right away her ET tube cultures came back positive for two different bacteria, and she was started on antibiotics for that. Her PD fluid also showed white blood cells, meaning even though there was no positive culture her body was creating white blood cells to attach some kind of infection. We have dealt with the PD infections before, so it wasn't a shock to us, she is also on CRRT dialysis which is much more efficient for clearing the toxins from the blood. So, for now she is stabilized in that aspect and doing well with her fluid removal. Like with any surgery there is risk of infection, so we weren't too worried and knew that she was already covered on quite a few antibiotics for the ET and PD markers. The labs continued to show some elevated markers, and the team checked more labs, and the cycle continued for the next two days. We were informed yesterday that the team was concerned that Annabelle might have something called TAMOF. By medical definition thrombocytopenia-associated multiple organ failure (TAMOF) is a clinical syndrome that occurs when critically ill patients develop endothelial damage and multiple organ failure (MOF). How we were explained it is her body is making antibodies that are attacking her own platelets due to an increased inflammatory response. This is rare but the team has seen it in other transplant kids who experience acute kidney injury.

One thing we knew about Annabelle is that she is a very complex case, and her kidney failure did not simplify anything. The team worked quick to start running tests and getting all the needed information to make an accurate diagnosis. We were told about what plan of action and treatments would be needed if the TAMOF was indeed the cause of Annabelle's difficulties.

Through all of this her blood pressures continued to be unstable and jump around. The team has done many echoes to continue to monitor the hearts’ function. This is made more difficult by her chest still being open, so their images aren't the greatest. We know that her new heart was slightly larger than her old heart so the pressure in her lungs and heart have been adjusting to everything. She was originally taken off her nitric, but the team has decided to put it back on to see if it helps lower her PIP on the ventilator. Her most recent echo showed some decreased function in the right ventricle due to the higher pressures. This is not uncommon in post-transplant kids but still something to note.

Last night there was a moment that her team was worried about a possible brain bleed or stroke. Her nurse noticed some facial drooping that was not noted on her previous hours check. The team immediately notified the neuro team and us. They said her pupils were reactive and nothing on her monitor or labs had changed but to be safe they took her down for a CT. While this isn't our first rodeo when it comes to possible brain injuries it was very triggering and scary. We know Annabelle is strong but there are so many new factors that come with this transplant that no amount of information could prepare us for. She was back within 45 minutes of them noticing the facial droop and her CT showed no signs of stroke or bleeding. THANK GOD! She did have EEGs for 12 hours to monitor for any seizures, which also showed nothing, and her team was happy with that.

All these little things have left us asking, is that a transplant thing or is this an Annabelle thing. We have seen her many times before not follow the expected pathway and just do her own thing. While this is extremely anxiety provoking, it's nothing really new to us. The team is still working on figuring out what they can do to optimize all her organ systems and keep her in a safe stable place.

For right now she is stable and healing. The plan is to close her chest partially today and hopefully be completely closed by next week. There is concern that her PIP will continue to rise and possibly cause more work for the right ventricle of the heart. The team is taking it very seriously and doing what they think is best for her while still listening to her body.

Annabelle remains medically paralyzed and heavily sedated while her chest is still open. Our current hopes are for her body to continue to heal and the pressures in her lungs to come down. We also pray that her body continues to fight the infections she is currently dealing with and that the antibiotics will help speed that process up. We hope to see her paralytic lifted in the coming week and start seeing her eyes and personality again. This has been a VERY long week, and I know there is more to come. We continue to pray to God for strength for not only ourselves but also Annabelle, her team, her donor, and their family.

I know this is a long update with a lot of information and bumps in the road. We will continue to update, likely in posts similar to this. We are hoping that in the coming weeks we will be able to get more answers and improvement. For now, we are forever grateful for our amazing heart warrior and all the challenges she has overcome.

Love, Sidney & Luke

Happy Saturday!

It's been quite a busy week here for both Annabelle and us. We started off Thursday with having to escalate Annabelle's respiratory support to a nasal mask. Due to the amount of extra fluid, she had from being off her PD during transportation her lungs were struggling to keep up. She hated the mask. She was constantly pulling at the straps and causing air leaks. After de-stating into the 70's they decided to try another full-face mask. Referred to as a scuba mask, this one was much more successful. They were able to get her SpO2 up in the 90's and stable. With the help of the scuba mask and the changes to her PD her left lung was able to open more, and she has been ventilating much better since!

Luke and I met with many of the transplant team members and prepared for the evaluation to get Annabelle relisted as Heart/Kidney at Lurie. A lot of the information was just following up on what we already knew from being listed in MN. However, we did find out there will be a slight delay in getting Annabelle's wait time transferred from Children's to Lurie. We were told it could be as quick as a day but could be up to five. While five days doesn't seem like a lot it can be the difference between getting a heart next month vs 2 months from now. She is currently status 7b and not accruing any time. We are hoping the transplant team can get all their findings and information submitted and get her listed within the next two weeks.

The team also decided on Thursday to up the PD fluid amount that Annabelle was getting. She has been on 100ml for the last 6 months; the decision was made to up the fluid and try to float her PD catheter away from her liver. The CT scan that they did on Wednesday discovered that her liver is much larger than normal and actually extends down towards the lower part of her pelvis. The idea is that by upping her fluid amount the catheter will have more room to float and not rub on the liver so much which they believe has been causing her bleeding these last 3 months. Another thing the larger amount of fluid would do is allow her to eventually be able to come off PD for a few hours a day so we can do PT/OT and possibly go for walks!

Yesterday they tried the nasal mask again and had slightly better luck. She still pulled at the straps and didn't want to small or interact, but her numbers were stable, even wean-able. The team discussed at rounds trying her on a high flow cannula this weekend and seeing how she managed. We knew in Minneapolis that her respiratory numbers were wean-able but due to trying to get her to grow they did not mess with them. The idea of taking her off Nava was honestly not something I was excited for. I have seen her struggle and be emergently intubated too many times. I did discuss my worries with the team, and they reassured me that if I or they felt that she wasn't doing well we could always go back and try Nava again.

After about 24 hours of the increased PD fluid Annabelle's PD fluid is completely clear! The extra 20ml seems to definitely have helped get the catheter away from the liver for the time being. They also decided to go back to the manual PD so that they could more closely monitor and change the amount of fluid they are pulling off. As of Thursday night she was negative 300ml which was a very large swing from the positive 250 she was the day before. The hope is to keep increasing the PD fluid amount and eventually switch her back to the automatic PD machine.

We finished meeting with everyone from transplant yesterday and now we really just have to wait. The ICU doctor mentioned that they are likely going to want to do more tests and procedures to cover everything and get a really good look at everything Annabelle has going on. There has been talks of more echoes, a bronch, and possibly an airway evaluation. We hope they can get these all done before she is listed so that we aren't waiting on test results once she can receive a heart.

This morning at 11AM they switched her over from the nasal mask to high flow and she has remained stable and oh so happy! She is smiling and yelling at everyone! She is back to playing with her toys, investigating everyone who comes in the room and showing her personality. The goal is to keep her on the high flow during the day as long as she tolerates it and then switch to the scuba mask at night as required. So far this feels like a very big step for us and I'm happy to see her doing well so far. Having her on high flow before her surgery would be extremely helpful for her recovery afterwards. For now, we will closely monitor it and make sure she stays stable and happy.

That's about it for updates. Luke drove home yesterday to get back in time for work and we are hanging out is the big city. Annabelle and I are starting to get a routine and are slowly getting to know the teams and all the different providers. Seeing her happy and back to her normal baseline really makes it easier to accept that we are in the right place. It is still very unknown how long we will be here, and as many have asked, I am no longer working. I am trying to make Annabelle my main focus while we head down this part of the journey. I will update here as often as I can with the updates I have.

Love,

Sidney & Luke

Hello! Another late-night update with some really exciting news!

Our insurance has finally approved for Annabelle to go to Chicago and Chicago is ready to take her!!!! We are so excited and ready to go!!

Our next step is to hear about transportation and if she will be going by air or ground. The ICU from Chicago will be talking with our ICU team here tomorrow and Tuesday and getting a plan in place. We won't know more for sure until they talk but I have high hopes we will be out of here in the next week or two.

We are working with social work to get any paperwork figured out for a room at Ronald McDonald since we will likely have to stay in Chicago for up to six months post-transplant. I have already started taking down her room decorations and taking home things that will not be going to Chicago with us. Her room looks so plain now, I can't wait to get to decorate and set up her new room.

As for Annabelle she has been good. Still fighting her Rhino and teething. She has still been able to remain stable on her vent settings and is sleeping and playing as normal. She's even been extra chatty with us and the nurses. She has started say "hi" and "hey" pretty clearly and I think we even heard her say "no" a couple times.

PT and OT have been working on her core strength and we were finally able to get a stander that was small enough (ish) for her! She had her first session in it on Friday and she loved it! She really enjoyed the view and how excited everyone was for her. She has been working with Speech as well and trying new flavors and textures of food. We still aren't letting her eat large amounts only because her stomach still doesn't work due to the heart failure. The hope is that once she is transplanted, we can start working more with eating orally and avoid a feeding tube to go home!

I know a lot of people have been following this journey and are so invested in our little warrior’s story. I was to say thank you to every single one of you for all the words of encouragement, donations, prayers, and everything this last year. August 16th will be our 1 year in the hospital. When we started this journey, we definitely didn't think that we would still be waiting for a heart by this time. We were told 6 to 9 months was very usual for babies her size and we really hoped that would be the case for us. Unfortunately, Annabelle had other plans and here we are, 354 days later. The amount of love we feel is unmeasurable and I honestly don't think we could have made it this far without all our support.

A few people have asked how they can help us as we get ready to transition to Chicago in preparation to accept a heart. With me being in Chicago and Luke being home I know meals would be extremely helpful for him as he is working 12-hour days. If you are interested, please feel free to text me and we can get it figured out.

Another way to help would be through our GoFundMe or Help Me Bounce fundraisers. I will post them both below. I also have Venmo for those who would like to donate directly.

- https://www.gofundme.com/f/prayers-and-donations-for-annabelle

- https://www.helpmebounce.org/campaign/redman-family

As always, the power of prayer is welcome and we love hearing about how Annabelle's story is shared and how she has touched so many people.

I will update when we have a date and do my best to keep everyone in the loop as we get ready to enter this final stage of this very very long wait. We are so excited for the possibility of being home this year and having Annabelle healthy. We pray that everything this week goes smoothly and hope to be updating you from Chicago very, very soon. <3

Love, Sidney & Luke

Hello everyone! Sunday update, no real big changes with Annabelle. This is both great and frustrating. Great that she has remained stable and happy, frustrating because we are just sitting in limbo waiting. Annabelle continues to struggle with weight gain, mostly because of her dialysis. She has been as high as 8.3kg but always falls back to 8.1. The last few days her fluid balance has been VERY negative and her team wonders if that means she's having more urine/stool output then she was before. They plan to change her dialysis fluid again and see if that will allow her to be a little more positive in her fluid status and help with her weight gain. Last week we did a kidney ultrasound to check if there has been any noticeable changes to her kidneys. The results showed both kidneys are still in normal range for her age group with is great! This means the kidneys are not atrophying and the likelihood of their function returning is greater. We continue to pray that she is able to start peeing more on her own so we don't have to transfer to Chicago. It has also been decided to stop weaning her oxygen support and leave her at the NAVA level and settings that are comfortable for her. The hope is this will allow her body to grow and focus on healing instead of asking it to support her lungs more. Thank you for all the prayers and support. Hopfully we can get her kidneys online and look forward to accepting a heart. Until then please keep praying and keep your eye out for this special little girls birthday celebrations coming up at the end of this month!

Love, Sidney & Luke

Happy Tuesday, Annabelle had a great weekend and has continued to be weanable with her vent settings. We are hoping to get her peep down to 10 again and her FIO2 down to 21 percent. She's currently on a peep of 12 and FIO2 of 25 percent.  She has become so vocal and even trying to laugh when dad and I play with her in the crib. She's getting out for PT and OT and I'm hoping to start speech again soon. We got her a new high chair for therapy and she absolutely loves it! Her head control is improving by the day and she's getting so strong. I love seeing her explore her with her hands and feet. She has started showing interest in rolling over again but with her Berlins it's just a very difficult process.

With her birthday coming up I have been working with our providers and child life to get as normal of a celebration as we can! I can't believe she's almost a year old. We are so blessed to have spent all this time with her.

One thing that saddens me about her birthday is once she hits a year old she will loose priority on the transplant list for infants. This means she may not see as many heart offers as should would being 10 or 11 months old. It's a very hard pill to swallow, the fact she is alive at all is due to a machine supporting both sides of her heart but shes deemed "of lower priority" due to living long enough. It's maddening but I know it's how the system works, as unfair as it seems sometimes

She has been coming up high on the list, even 1st a couple times but her team has turned them down for one reason or another. We are praying for her to gain weight so we can transfer to Chicago soon and hopefully receive our miracle heart.

We continue praying for Annabelle's stability to continue and for her lungs and body to grow and get stronger. She is on her own timeline and I know we will get to the finish line exactly when we should.  Thank you everyone for your thoughts and prayers. Love, Sidney & Luke

Good evening everyone. Definitely not the update I wanted to give anyone but here we are. First off, thank you to everyone who reached out. I received all your messages and texts I'm just not ready quite yet to reach back out. I'm processing everything that happened this morning and what this means for Annabelle's journey going forward. This morning at 1:30 our nurse noticed elevated work of breathing and head bobbing from Annabelle. She had had elevated respiratory rate for a couple of days but her team was watching it and all her labs seemed normal. It became apparent at 2 that she was struggling to catch her breath and get adequate support. The team went up on her vent support many times trying to help capture her but it was ultimately decided that she needed to be reintubated after her lactate acid levels continues to go up.  She was intubates at 5:30 and it wasn't as smoothly as they would have hoped. Due to her lower oxygen stats to begin with when they rocked her for intubation she de-stated quicker then they were expected and they had trouble bagging her. She was with low oxygen for a few minutes before the tube was successfully placed.  Her team does not think the low oxygen should have any lasting effects, in fact she has been her normal smiley (though slightly irritates about her lack of hand freedom) self. She is on PRN Ativan and Clonidine along with her Tylenol because of course with all this going on, she's still teething.  This was a very unexpected event and her team is not sure what caused her decompensation, but we know from past experiences when she does decompensate she does it fast. So I'm thankful that she is now has a stable airway while we work on what happens next. Due to this being her 3rd time being reintubated I know her team is going to start talking about a treach again. This is not something myself or Luke have in mind for Annabelle but we also understand the need for a stable airway to keep her safe while we wait for a heart. Next week we are planning a cardiac CT and airway evaluation to help identify any possible reasons for her reintubation.  Please pray that we can find some answers and aren't left not knowing why this keeps happening to our baby girl. Every step backwards adds time onto our wait. Our wait for transfer to Chicago and a wait for a heart. This girl needs to gain weight and being off feeds while her body recovers is not helping. Praying for a stable weekend and improved respiratory support.   I will remain at the hospital with Annabelle until we have some more answers on what steps we are taking next. For everyone asking what they can do to help, meals and snacks are greatly appreciated. We are lucky enough to have a space and a small fridge/ freezer to keep meals in. In you are interested in doing any types of meals please feel free to text me and I can set something up. As always please continue to pray for strength for Annabelle, as well as Luke and I as we navigate another intubation.  Thank you. Love, Sidney & Luke 

Happy 10 Month Birthday to the strongest Heart Warrior I know! This girl is kicking ass and taking names! This is the second month she has been extubated on her birthday and shes showing so much improvement on the daily.

She has continued to wean her respiratory support and is making leaps and bounds with OT and PT. We started "messy play" and letting her taste puree! While she isn't able to actually eat anything by mouth yet it's so fun to watch her explore and learn. Speech says she is really developing well and that her oral aversion from being intubated for roughly 5 month is remarkably low. She still loves her high chair and we are planning on getting her her own that has some fancy features so she can be on the floor and still have support while she practices sitting up by herself. She is also working on rolling and holding her self up on all fours! It's amazing to see her progress so well after so long of just laying in bed. I have a hard time believing she is the same baby from 2 months ago sometimes.

Our main goal is to keep growing and hopefully start peeing or seeing some signs that her kidneys are getting healthy. Other then that it's simply a waiting game. The plan is still currently to transfer to Chicago once she reaching 10kg. She is still hovering around the 8kg range so we have a bit to go but hoping with some tweaks to her feeds and meds we will start seeing some growth soon.

Thank you to everyone who has supported us through 8 months of hospitalization and kept us in your prayers. We feel blessed to have such a strong support group behind us. Love, Sidney & Luke