The Redman Family

Ramsey, MN
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3 months
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    Annabelle Redman
    Internal Organ Failure

    Annabelle was born 6/29 and came home on 7/1 a seemingly healthy happy newborn. Within the first 2 weeks we struggled with feeding and had multiple doctor visits including a lactation specialist to try and figure it out. We tried multiple different routes to get her eating but she continued to have slow weight gain and struggled to meet her feeding goals.

    On August 16th her doctor recommended we go to Children's Hospital for observation to help them better understand her feeding struggles. Upon admission Annabelle was observed taking her regular bottles of 1oz to 1.5oz. We saw speech therapists, lactation specialist, and a cardiologist.

    An ultrasound was done of her chest to try and locate a possible reason her her small feeds/fussiness. That ultrasound reveled that her heart was enlarged and struggling to pump. We were then informed by a cardiologist that she would be moving up to the cardiovascular floor for more intense treatment to try and help her heart as she was seriously struggling.

    We were informed she has dilated cardiomyopathy. Her heart is enlarged and the ventricles are weak and struggling to pump blood out of the heart and lungs. Leaving her with fluid in her lungs, causing her little body to be working overtime. This diagnosis leaves us with one option, heart transplant. Her team worked hard to get her stable and eligible for listing.

    On September 8th Annabelle was listed for a heart transplant as a status 1B. This life saving surgery will get us one step closer to bringing our girl home, until then we are staying with her at Children's Minnesota.

    June 4, 2024
    June 2nd

    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

    May 21, 2024
    May 21st

    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

    May 3, 2024
    May 3rd

    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 

    April 29, 2024
    10 Months Old!

    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

    April 26, 2024
    April 26th

    Happy Friday! It's been a pretty chill week here for Annabelle. On Wednesday we celebrated 1 month extubated! She has been rocking her NAVA support and her team was able to lower bother her PEEP and NAVA setting this week. We will likely not touch those again till later next week.

    Our biggest news this week is we were able to finally move out of the ICU rooms and down into one of the IMC rooms! It has been 7 months in ICU and while she is still ICU status she if finally healthy enough to be farther down the unit. While this is great news I can't help but feel anxious and nervous underneath the happiness. Moving down the hall has been a goal of mine since her first surgery. She's had so many ups and downs I honestly thought I wouldn't see the day we went back down the hallway. I thought we'd be on our way to Chicago before we could move down. I'm so grateful every day that we spend healthy, extubated, and stable. I thank god and every single person who has ever prayed for us these last 8 months. It's amazing what this little girl is capable of and I feel like we haven't even seen the best of it. As I prepare for Annabelle's 10 month birthday on Monday I am also working on preparing for her 1st birthday. Her team believes we will still be in Minnesota in June so the plan is to figure out a way that we can have visitors (healthy, masked, and any other precautions we require) visit her for a small window of time. This will be a HUGE process and depend completely on where Annabelle is care wise and what her team will allow. I hope to be able to share her big day with family and friends. For now we will enjoy the peacefulness of ICM and keep counting every blessing on the long road to transplant. Thank you for praying for Annabelle and our family. Love, Sidney & Luke

    April 13, 2024
    April 13th

    Hello, This week sure took a wild turn. Wednesday night Annabelle was throwing up and having more withdrawal symptoms. They have been weaning her off her last sedation medication and while she has been handling it well it seemed to be too much. Thursday morning she developed more symptoms of withdrawal, including loose stool and a slight fever. When I talked to her team at 12 she was going okay but definitely not feeling well. I arrived back at the hospital around 1 and Annabelle was clamy and very dusky. She was still trying to smile and be her happy self but you could see in her eyes she did not feel good. It was shortly after I arrived that her VADs began to fill less and her team decided to give her some fluid back to see if that would help. That also decided to hold feeds and run a few tests to see what we were dealing with.  Her gas looked good, her vent wasn't alarming but she just looked sick. After a bunch more tests it was discovered she has a stomach virus, Rotavirus. This explained the throwing up, the loose stool, the elevated heart rate, low grade fever. All of it.  This poor girl. Something as small as a stomach bug really just hits her hard. It's scary to watch her struggle with something so normal yet so big for her little body that is already fighting so hard. I'm reminded how sensitive and fragile her health is right now and honestly it makes me worried what the future looks like. Once Annabelle gets her new heart she is no longer going to be able to get live vaccines, she will be on meds that lower her bodies ability to fight virus and keep her safe.  We are reminded everyday how tough this journey is going to be going forward and while I'm so greatful for the opportunity to give my child a second chance at a life it's hard knowing the challenge that will forever lie ahead of her.  We are day two into letting this virus run its course. Thanks to iv fluids and Tylenol Annabelle has been able to stay pretty comfortable. Praying she recovers quickly and continues to have good respiratory support.  Please say an extra pray for this heart warrior and that she kicks this virus quickly. Love,  Sidney and Luke

    March 20, 2024

    Hello!  Happy March! I ment to post an update way earlier but life get away sometimes.  So much has happened in the last 2 weeks I'm still processing everything. First off we were lucky enough to move rooms 2 Sundays ago. After 5 months in the same ICU room we got some new scenery! It was quite a shock for some people to not see us in bed 5!  Second we gave weaned SOOOOO many meds! She is completly off her blood pressure medication, iv nutrition and in 2 days she will be off her Dex. She had been on Dex since her first surgery jn September so getting off it is a huge milestone!  Third we celebrated her 8 month birthday!!! I can't believe she us already 8 months. Time seriously flies by sometimes. She's smiling a lot, using her hands ro grab things, kicking her legs constantly! All normal baby things and it's so nice to see! And our biggest milestone is after 5 months we no longer have a breathing tube!!!! Annabelle was extubated on Friday the 1st and has remained stable and even improving since! Her team, the nursed, everyone is so happy to finally see her face! This also means we are able to start PT and get her out of bed and onto a play mat! So far she loves it!  So many good things lately and we seriously are just counting every single blessing. It's a blessing to even be here. 2 months ago we didn't know if we'd ever be bringing Annabelle home and now to see her thriving is just amazing.  Thank you to everyone who checks in on us and prays for Annabelle. ❤️ Love Sidney & Luke

    February 14, 2024
    Happy Heart Day

    Hello! Long time no update.

    SO much has happened since Christmas but I want to start off by saying a HUGE THANK YOU to everyone who has shared, donated, rallied, prayed, and helped through this entire journey so far. We are far from out of the woods but we are finally seeing some good days and some little wins. We feel so blessed that so many of our friends, family, and even friends of friend who care about this amazing little girl. We will never be able to express the gratitude we have for the community that has helped us so much.

    As for Annabelle she is going great. Since her cardiac arrest on December 22nd she has had a tough go with infections, failed extubation, and blood clots. Her team really didn't know what to expect from her after the arrest. She had quite a bit of clot burden on her pulmonary artery that they weren't able to remove that they weren't sure would ever go away. They talked about using a clot buster medication but due to her already high risk of bleeding there risk of a brain bleed was too high so they opted to just watch the clot and see how she did on her current blood thinner. She had many days of her Berlin filling less then 50% and while it wasn't ideal the team went with it since her other stats seemed to be stable.

    As the weeks went on she was looking better, we started her PD (peritoneal dialysis) which she has done amazing on, in hopes to help heal her kidneys and lessen the amount of blood transfusions she was needing. She has  brief moment of extubation on January 5th that ended after 5 hours due to work of breathing and her Berlin not filling. This was super sad but we knew it was for the best and she still needed time to recover from her event.

    The newest progress is we were finally able to switch Annabelle over to her RVAD Berlin and she is officially on a BiVAD for the first time in almost 5 months. This was our goal from the very first surgery and we are over the moon to see it finally come true!

    Our next goal is for her kidneys to recover. Her team is giving her 3 months on the BiVAD to see if the increased blood flow and pulsation helps wake up the kidneys. There is a lot of unknown on if that will happen but we are praying and hoping for the best. Her team says crazier things have happened and this girl is one of a kind so we are praying for a miracle!

    Thank you again from the bottom of our hearts for supporting our little girl. Shes going to do amazing things!

    Love, Sidney & Luke

    December 20, 2023
    December 20th

    Happy hump day, 5 more days till Christmas, I can't believe how fast this year has gone. At the same time it feels like it has dragged on forever, and will continue dragging on.  I find myself often thinking of all the things we are missing out on. First holidays with family and friends, milestones, and every other normal thing that's been stripped from us. I'm struggling to find the joy this year and yet when I look at my daughter I know I'd do this over again if it ment having her in my life. Her personality shines through every shitty thing that happens to her.  We have had little change this week. Annabelle went back on dialysis on Saturday and thankfully her GI bleed hasn't returned. She's more wakeful and I swear trying to smile around her ET tube. I'm able to hold her outside of the bed again and we even got to put clothes on again! That was a big joy for me yesterday, how I have to find a way to alter all her clothes 😅. Her team is discussing with multiple different doctors and transplant teams to see if anyone has had a patient like Annabelle and what is the best way to help her. Praying they come up with some ideas but the answer may just be we wait and see. Wait and see what her kidneys do and how best we can help her grow.  The idea of being here longer is hitting us hard, we want nothing more then to go home and live our lives together as a family. The struggle between know we are where we need to be and wanting to be at home is tiresome. Praying we get home sooner rather then later.  Please continue praying Annabelle remains in good spirits and strong while we wait for her kidneys to wake up. Pray for her team of doctors to find some answers that help her in this journey. Pray we can get a heart and home soon. And thank you to the amazing community that has rallied behind us, to support us, pray for us, and help in every ready possible. Love,  Sidney & Luke 

    December 16, 2023
    December 15th

    Happy Friday, Little bit of good news from our favorite heart warrior.  Annabelle has been trialing off dialysis for 24 hours now. Her stats remained steady and she did not require any additional support other then her meds to help kick start her kidneys. She was having a small amount of urine output on her own but not as much as they would like. She will likely go back on this evening or tomorrow morning to help with the fluid load.  Good news is she didn't absolutely fall apart without the support from dialysis. Her team feels this is a big step in the right direction. Her GI bleed has also stopped while off dialysis which has been a week long battle.  Over all its been a good day. I'm so proud of Annabelle and she is so strong. I'm still having some big emotions about all the ups and downs but I know we are in a much better spot then we were. Her team feels fairly optimistic about her kidney health and is encouraged that her stats are remaining stable.  We will see what the weekend brings and pray she remains stable and looking good. Love, Sidney & Luke