The Redman Family

Good afternoon, time for a little update. Good news, Annabelle is finally on her left berlin.  Bad News, she is intubated again. She's running through sedation faster and we are having a tough time keeping her comfortable. She also had a infection from her breathing tube and ANOTHER UTI. 😮‍💨 After being extubated for five days Annabelle started struggling with secretions and was working harder to breath. The decision to intubate her again was made since she was going to be intubated for the berlin placement the next day. She handled it well but it felt like a big set back after doing so well for 5 says.  Her berlin switch over went great and she's being doing so well with it now. It's filling better then ever and gives me hope we will eventually be able to get her set up on her BiVAD.  Thursday night Annabelle was breathing faster and seemed to be more upset and agitated. Friday night she developed a fever and by Saturday she was extremely uncomfortable and nothing seemed to be helping. They upped her sedation again but like expected that caused her to need more support from her vent. All of which just puts us back further from the hope of extubation next week. I feel like everything is one step forward and five steps back. The struggle of being happier for good days and feeling completely defeated on her bad days is taking its toll on us.  Please pray that the antibiotics help fight off these infections and we are able to get Annabelle more comfortable.  Pray that we can get her extubated once her infections are under control. Pray that we can get Annabelle off ECMO and on her right berlin soon. Love,  Sidney & Luke

Holy cow!  A lot happened this week, and it all seemed to go by so fast.  Annabelle was extubated Friday at 12:30 and has continued to improve through last night and today. She is so happy to no longer have a breathing tube and loves looking around again. She's been slowly finding her voice again and is very bright eyes!  They have weaned a ton of her iv sedation so she's able to be more awake and interactive with us as she works on getting more fluid off her lungs with coughing. The coughing is great, even if it sounds horrible and honestly scares the shit out of me sometimes.  To top of getting extubated both Luke and I were able to hold Annabelle today and it was honestly amazing. It's been 38 days since we were able to hold her and as soon as she was in our arms she fell right to sleep. It was perfect. Like she knew she belonged in our arms.  I'm so proud of her and how strong she is. We are so proud to be her parents. ❤️  Love, Sidney & Luke 

Good evening! Today we started Annabelle on CPAP trials to work her toward extubation. I honestly can say I was starting to feel like we were chasing our tails trying to get here.  She has been doing 1 hour and now 2 hour trails and doing pretty fabulous each time. She's even gotten a dressing change and new iv placed during her trials. She's been able to calm herself down and regular her breathing so well I'm so proud.  She is such an amazingly strong girl! Tomorrow she does down for a CT scan for her transplant team and we are all praying that goes well and without any issues. She's going to love going on a field trip, even though these field trips give me slight panic attack. Lots of small changes but all big steps towards out end goal of extubation, off ECMO, and back on her berlins. I'm hopful all of that in within reach. We just are going at her speed.  Thank you for all you thoughts and prayers ❤️ Love  Sidney & Luke 

Today we celebrated Annabelles 4 month birthday. She's has a rough time lately and I needed something fun and light hearted. I decorated her room with unicorns and rainbows. I don't even know if she likes those things but it brightens up the room. I played her Tonies and rubbed her hand till she feel asleep.  I wish I could do more for her.  Everyday is a struggle here. I pray for the day she no longer has to be here.  Annabelle remains on ECMO and intubated. Her team is working on getting her extubated on ECMO but her body has a lot of work to do before that can happen. Right now it's a lot of tinkering and waiting. A lot of waiting. Please keep our girl in your thoughts and heart.  Love  Sidney & Luke 

Tonight I am greatful. Greatful to be at Children's.  Greatful to have team of nurses and doctors that care for my daughter.  Greatful for modern medicine and all the advancements there is to help support my daughter. Greatful for my husband who gets up everyday and goes to work to provide so I can stay close to Annabelle. Greatful for the friends and family who check in and support in whatever way possible. Greatful that Annabelle is still here with us fighting. This morning at around 9AM Annabelle had a episodes of low stats, low oxygen saturation, and over all decline. Her nurse was quick to react and quickly 10 people were in our room trying to figure out what changes needed to be made to what machines.  After about 15 minutes it was decided that Annabelles body needed more support. She needed to go back on ECMO so her body could rest and her team could come up with a game plan to figure out why she keeps destating and having periods of low oxygenation. They quickly got everything in order and within the hour Annabelle was stable and I was so greatful something worked.  The goal is to continue to support her and look into some additional possibilities for why her lungs aren't able to keep up with the demand. Praying this week brings us more answers and less questions while Annabelle continues to heal and stay strong while we wait for a heart. Love, Sidney & Luke 

September 29th around 4PM Annabelles stats weren't quiet going the right direction. She hadn't started peeing like her doctors wanted and CVP (central venous pressure) was going up. An echo was ordered and it was discovered that the right side of her heart was struggling. The left side of her heart wasn't receiving enough blood flow so she wasn't getting blood out to her body. The decision to go in and place a RVAD (right ventrical assist device) was make immediately. By 5:30PM she was being wheeled back for her second surgery. When I tell you I was a mess, I mean absolutely a mess. I knew the surgery was likely her best option but with little time to process it the emotions hit me like a Mac Truck.  This surgery was much shorter then her first. 4 hours from being wheeled back we were able to see her again. We were told she handled surgery great and was already improving tremendously with the RVAD support! This does mean one more machine in her room, but thankfully this is a temporary one. Her teams hope is to get her going in the right direction for recovery and slowly wean her off this device. If her heart can keep up she will be left with just the Berlin heart. If that isn't the case they will go in and place another Berlin on the ride side of her heart. 

On September 15th we were told Annabelle's condition was worsening. She was no long tolerating feeds larger then 10ml an hour, even with her NJ tube. She was gaging and vomiting more frequently and de-sating regularly. While she was still smiling and playing her body was obviously tiring.

Friday September 22nd we agreed that now was the time for her VAD (ventricular assist device). Her surgery was scheduled for early the following week and we scheduled a meeting with the surgeon to talk about the surgery.  Saturday September 23rd we decided to go home to try and get some things done before the surgery. Knowing we wouldn't be leaving much right after her surgery. That night I get a call that she is being placed on high flow oxygen due to her de-sating and over all working harder to breath. I had already decided to stay home that night so I just asked to be called if ANYTHING else changed. Around 3AM I get another call that they are completely turning off feeds for the time being. Not what we wanted to hear, especially on the night we aren't staying at the hospital. 

Sunday September 24th we head back to the hospital to get ready for our meeting with the surgeon. Annabelle was visibly breathing heavier and sleeper. Poor girl had a tough night. We talked with the doctor for about an hour, going over the procedure, risks, and recovery. It was a lot. I don't think I was scared until that moment. It was real, this was going to happen, and as scary as it all was the alternative of not doing the surgery was no long an option. Surgery was scheduled for Tuesday, the 26th. Only 2 short days away. Monday September 25th I planned to spend as much time holding, loving on, and just being present with Annabelle. Of course she had other ideas. She didn't want to wake up, was crabby when being held and just gave her opinion on everything! She finally woke up in a good mood and we spend a few really good hours together! I even got to give her a bath, a real bath. In a baby bath tub real bath. It was amazing! She loved it and I got some adorable photos thanks to our amazing nurses that day. Around 8PM we were informed that we would be moving rooms that night instead of during surgery. So as soon as Luke got up to her room I got to work taking down our decorations in preparation for the move. Knowing we were moving her that night I wasn't going to bed till she was settled in her new room. Not my smartest idea but you live and you learn. Around 1AM we finally got Annabelle into her new room and settled for the night.  Tuesday morning we were up at 6AM and in her room spending the last hour till surgery with her. She was dead asleep when we arrived and had had a amazing night. She slept through the night, wasn't grumpy, gaggy or anything. What a perfect pre-surgery night! We woke her up, held her, told her how much we love her and how brave she is till 7:30 when her team came in and wheeled her off to the OR. Then began the longest 8 hours of our lives. Every update brought a moment of panic then joy as we were told she's doing great, she is stable, surgons are happy with that is going on. Our girl was doing amazing.  She came out of the OR around 4:30PM but we had to wait till almost 6PM to see her as they got her settled and comfortable back in her room. I'll never forget walking into her room and seeing her tiny little body hooked up to so many machines. But she was alive, the right side of her heart was stable, and we were one step closer to a healthy baby.