The Redman Family

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

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

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

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

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 

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 

Happy Sunday, Small update on our little heart warrior. Annabelle has been responding well to the dialysis, we were able to pull of over 2kg of fluid! Which is just amazing seeing how she's only about 5kg all together. Her personality is showing again and she gives everyone a wicked side eye when they are examining her.  Her berlin cannula sites are looking great, and her CVP has been the lowest we have seen in a LONG time. Her lung xray is also looking great, so many amazing things! I'm greatful that all these things are getting better and I do give thanks to dialysis for making that happen.  Unfortunately with her still being on dialysis her team has had to decline a heart due to her being too sick for transplant. It breaks my heart that we are so close but what she needs the most is just out of reach. Praying  We are meeting with her team early this week to nail down a plan to get her kidneys to wake up and get her off dialysis successfully and safely. Please pray that we can get Annabelle healthy enough for transplant soon. ❤️  Love, Sidney & Luke

It's been quiet the whirlwind of emotions this last week.  Last week in Wednesday Annabelle turned 5 months old. I decorated her room, bought snacks for the nurses and was ready to celebrate what I thought was just another normal day. She had a good night, her nurses seemed happy with where she was. All was right in the world of CVICU.  Until it wasn't.  A doctor came in and told me they would be starting dialysis due to her rising kidney levels and the scuffing not helping enough.  I was gutted. Dialysis was the last thing I wanted to do, especially on her 5 month birthday.  I sat in her room and cried. Cried out of sadness, fear, anger. I knew we wanted to give this girl every chance and do anything we could to help her even if that ment she wouldn't be eligible for a heart at the moment.  She has been on dialysis for 6 days now and while I don't like the machine, what it is doing for her is great. Since starting she is down 2 kg of fluid, she's able to open her eyes again, she has been able to wean off her oxygen support and use her lungs to almost their full capacity.  She looks like Annabelle again and is more awake and active and just over all a happier version on herself that we haven't seen in quite a while.  We have been dealing with quite a bit of withdrawal since the dialysis stripped all her sedation and pain meds from her kidneys but we are slowly working on getting her back to a good spot with that.  Our next big goal is to get her off ECMO and off dialysis. Two huge goals that she needs to do in order to be healthy enough for a heart.  Thank you to everyone who has checked in on us, prayed, donated, shared our story, all of it. Thank you. Please keep praying and keeping us all in your thoughts this holiday season.  Love,  Sidney & Luke 

Good evening, I feel an update is slightly over due. Annabelle is in a much more stable spot as of Saturday. She did not end up going on dialysis but instead another machine that is attached to her ECMO that simply helps pull fluid off.  She has had 3 really good days of getting fluid off, lowering sedation, and working on getting her lungs back in shape. She's requiring more oxygen then before but we believe that is because she is more wakeful. I have been able to hold her and cuddle every day which has been nice, I miss being able to be close to her. The plan is to continue pulling fluid for about a week and then the team will discuss if they want to do another cath lab to adjust her VAD flows again.  For now we keep praying she continues to lose the extra fluid and remains comfortable.  She is so strong, I can't say that enough.  Love, Sidney and Luke 

Hello, Not the update I was hoping to make, Annabelle is not doing well. Her team is struggling to keep her comfortable and her lungs are progressively getting worse. She is having more bloody secretions and requiring more support for all her machines. Her kidney levels are also up which means she can't have to much diuretic which she needs to help get fluid off her lungs.  It's starting to feel like we are chasing our tails trying to figure out how to get Annabelle comfortable and it's fucking awful to watch. She can no longer be awake and comfortable. We were told today that she might not be able to be extubated again till after transplant and that she may never be able to get on her RVAD.  My heart literally breaks seeing her like this and not being able to do anything for her. Please pray that we can get Annabelle comfortable and pray that a heart comes soon.  Love, Sidney and Luke