August 18 - Steady Now

I will start with- Sadie's heart numbers look good. Her EKGs and Echos have looked good. Her medication levels have evened out and she's almost completely off a couple of them. 
But. Her kidney function isn't trending great. It's not to a concerning point of intervention, but it's also not in a "good" range- it's currently the kid in the back of the class with headphones on: present, participating, but not exactly engaging and difficult to tell if they're absorbing anything.

The goal this week is to drink a lot of fluids. It's time to get serious about electrolytes. Her body flushes them out at a rapid rate which can also mess with her lab numbers. She's currently stable, but we're doing the work to get her to 'looking good kid'. Her kidney numbers will be rechecked on Monday and we can get a better idea of how they're doing.

Speaking of lab numbers- clinic was a little rough this week but Sadie found her person. The amazing lab tech in the transplant clinic. She knows how to speak Sadie, she pushes when she needs to push and she helps Sadie breath when she needs to breath. It's still a rough process and Sadie's still struggling with it, but it's getting better. I do have faith that every visit will get slightly easier.

I'm really proud of Sadie and her active roll this week. She's on a dozen different medications- before we left the hospital her transplant team made sure we had a weekly pill organizer. So far I've been handling all of her medication and Sadie's roll was to tell me if there was too much applesauce on the spoon for each swallow. Last night I asked her if she wanted to help me sort her medication for the week and she got very excited. We sat down and pulled up her written list and laid out all her medication bottles and she counted them out, put them in the proper spots and started to learn their names and what they're for. She's also grown accustomed to letting me take her vital signs and not getting frustrated with the cuff or the pulse ox as often. I think the hospital left her a little over sensitive to touch and every little thing made her nervous, we're starting to even out a bit on that.

The thing that I'm most excited to tell you about is today. Today we spent the entire day moving, I asked if she needed a break at least a dozen times and she'd keep saying "Nah-I'm good"- and there was no nausea, no extreme fatigue, no lack of appetite- just Sadie being Sadie. She's currently on a video chat with her sister while they both have dinner and watch the storms out the windows together and listen to Toy Story playing at the same time. It's the closest we can get to home at the moment but it does my heart and soul so much good to see it. I'm not entirely sure of the timeline left in clinic, but it will most likely still be another two weeks and then we'll see- we will go where we are lead.

Steady we go up this mountain. 

August 16 - Testimony

My pastor spoke this morning about spreading testimony, about getting uncomfortable and standing up and saying 'send me Lord' and it sits in my soul.

Sadie has a shirt that spells out Faith and each letter has several scripture verses in it.

Romans 10:17, Matthew 21:22, Psalms 37:5

Mark 11:24, Ephesians 2:8, James 2:17

Proverbs 3: 5-6, John 3:16, Hebrews 11:1

Throughout her hospital time Sadie went inward with her feelings and thoughts, not often coming out of her own mind as she processed everything. I worried a lot of days earlier on that she was cracking and breaking and that I couldn't do anything to help hold her together. Then one day a little girl, smaller than Sadie, walked by our doors and wall--which were all glass so you could see in easily--and she had very clearly just had her transplant and was on her first walk- those first steps outside the hospital room, the hard steps of pushing your body and feeling like just another step might take every single ounce of life you have. She was struggling, moving slow but she was doing it- and she only had her nurse with her. For whatever reason, she was alone- and immediately Sadie perked up. She asked me why she didn't have her mommy with her, why she was alone- and when we walked by her room and saw her all alone every time it broke a bit of my heart- but Sadie wasn't having it. She started to wave to the little girl, send her paper flowers, wave as we walked by her room. God sent Sadie to this little girl- and Sadie answered. Because of the barrier precautions we couldn't bring them together to play, but they formed their own relationship- smiling when they saw each other- stopping what they were doing to send encouragement as the other one walked by the glass doors- in the middle of pain and discomfort and upset- these two little girls said 'send me Lord' and showed up for one another.

I had a friend tell me recently "It's just so crazy that you were able to catch this" talking about Sadie's journey and my immediate response was "It's all just so- Divine". I stand by that. Sadie's life is testimony.

That she had this disease and lived so long without incident- That's God

That she had the right people- the exact right person there for her the day that she passed out- thank you Lisa- That's God

That after a dozen cardiologists she was put in front of the one (Thank you Dr. Tisma) that instantly recognized a disease that is so rare papers are being written off her experience for reference- There's God

That she was diagnosed two days before a world wide cardiology conference that her case was presented at so doctors from the middle east, Australia and Greece that have seen rare cases like hers could all weigh in on her and create a plan for her- That's God

That every single step of the way here she was not dropped through any small crack, that she was monitored via a heart strap and brought in for emergency surgery for an ICD- That she survived abnormal rhythms that would have stopped other hearts- that she didn't go into cardiac arrest- that one of the best EP Cardiologists in the US grabbed onto her and got her through an emergency devise placement and then immediately got her to UF- That's God

That one of the best pediatric transplant teams immediately accepted her and got her to the top of the transplant list- that her wait was merely weeks instead of months- that there was a perfect heart match for her- That's God.

That through every dip of her recovery she always pulled through- she had the right doctor at the right moment making the hard decisions and backing them up- fighting for her- doing exactly what she needed- That's God.

That every single step of this journey has been touched with church, community, and love, and an outpouring of support from family, friends and strangers alike- that our family has been held, and taken care of, and so blessed with prayer- that's all of you saying 'send me Lord' and he did- and you came.

But God.

I wrote to Sadie's first EP Cardiologist yesterday, Dr. Tisma. The woman that saw her and said 'this is what this is-this is what we need to do- this is how it's going to work', she's been keeping up with Sadie, and we both smiled as I sent her the picture of Sadie smiling- her face healthy- the color in her cheeks- her hair wild but long- and the life so vibrant in her eyes.

That's God.

August 13 - Updates

A few Sadie updates-

Our hope is that in a couple-few weeks that Sadie and I will be transitioning back home for a small period. Sadie's clinic visits will move to bi weekly and we can make the trip back for clinic days as they hopefully get spaced out even further. As we prepare for that transition there are a couple of updates.

Sadie's mail address is

Sadie Long

P.O. Box 1012

Santa Rosa Beach Fl 32459

Sadie has loved every single card and note and encouraging gift. I can not say thank you enough to everyone that writes to her or thinks of her or provides an activity for her. You all have filled her days with bright spots and given her something to hold on to thats not just a hospital room and the entire transplant process. She has discovered her love of flowers and paper and fabric flowers. She filled both floors in the hospital with flowers. She's learned a lot of science principles and now knows how to weave on a small loom. She's learned to sew and has created her first four small pillows. She takes pride in these activities and shows them off to everyone. Lately it's been incredible to watch her get back into play- she's started to play with dolls and dress up and different more physical activities that has her moving up and down.

Thank you. Thank you all so incredibly much.

As for how Sadie is doing: the short answer is good. Her endurance builds every day and she continues to do things she couldn't pre transplant. She walks a little further every day- until she reaches a day that she just wants to rest a little more. Her vital signs are all in a good range. On Monday she will receive her heart monitor as well so EP can keep an eye on her rhythm and her rate while she sleeps. She's on an abundance of medication but she's managing to take them in a better routine. The rough spot for Sadie is still very much her anxiety and fear about having lab work done. I pray that she finds peace with the blood work and that each time leaves her a little more confident. It's not fun, but its a small price to pay for a healthy life ahead. Currently her team is working on getting her medication doses worked out to create an even level, get her cut back and off of her caffeine intake and her diuretic. They're also keeping an eye on blood cell counts- currently it shows an elevation of inflammation, but there's a variety of reasons that could be- we wait and monitor it at the next blood drawl to see what her levels do. That's a lot of life right now- wait and see what happens- monitor- take vital signs- compare it to the next set and so on. Sadie's bandages have started to come off as well. She's healed enough to no longer need the daily dressings- which has caused her to notice her scars a lot more. She's not quite sure how she feels about them yet, I think they mostly scare her a little- she doesn't like when the material of clothing touches them- but she's adjusting. Today she's not said a single thing about them bothering her- it brings my heart up to watch her find peace with this.

I still hold my breath a little each time we make progress- slow and steady we go.

As we move forward I am continually asked what we need. I'm humbled by this question constantly because I know it's God showing up for us- and it brings me to my knees in gratitude.

Sadie will not be returning to public school. We've decided her immune system- or lack of it- would not do well in that environment- I will begin homeschooling her- I'll use The Good and The Beautiful as our base curriculum, but I am open to suggestions- and welcome any and all educational material.

The more timely need is this- The next couple of weeks will be spent out of the hospital and out of pocket in terms of food for Sadie and myself. It can get expensive rather quickly. I've been reminded recently that I need to accept help, and I am so incredibly thankful for the help given thus far. It's because of all of you that I'm not thousands of dollars in debt, that I've been able to stay beside Sadie through all of this, that Harper hasn't felt the impact- that both of the girls have been blessed in abundance. Thank you. As we move forward I look at practicality and know that a few more weeks of being away from home- of not being able to work- of feeding ourselves via restaurants is going to be a big financial hurdle, so I ask for any help you may be able to provide.

I'm also starting to figure out what our new life will look like. While I know that homeschooling Sadie is a must, I find myself looking for a way to bring in an income as well. If anyone knows of a work from home position please reach out to me. As Sadie grows stronger she wont require me to be at her side every moment, and while we will forever have to be cautious of infection and rejection, we did this so she could live- and we want her to live a full life. I'd like to be able to support that life for her- so if anyone knows of an at home position that can start in about an month please let me know. My e-mail address is: drwhitmoyer@gmail.com

Will has also stepped up immensely with all of this, as we look at coming back home and being a family again- Will is jonesing to get back to the airport. If anyone has any connections to airport jobs he would love to talk to you.

Thank you for your support, thank you for your prayers, thank you for walking this journey with us. We have a long road ahead- we're still looking at relocating closer to Gainesville in the future- for right now we're focused on getting our family back together, getting a stable life under us and seeing what plans God has in store for us.

August 10 - Clinic Days

We have entered into clinic days.

Thus far I've realized a few things after months in the hospital:
-I think my ability to park has gone down to that of a teenager. 
-Sadie is still an alligator to sleep with.
-I have never been more grateful for the ability to turn off the lights at night
-I am also equally as grateful for the blinds we can leave partially open to let the streetlight in because we don't sleep in the dark-dark anymore.

Life outside of the hospital is- exhausting. Sadie's new heart is in good shape but the rest of her- and honestly me- has some work to do to build up endurance again. We both get tired easily- at least she has a good excuse. So far we've had to have a few early mornings in order to get her blood work done at the correct time (730 am)- so we haven't found the smooth bliss of sleep just yet, but there is hope ahead. Sadie's clinic visit today came back good, her heart looks good- her labs look good, but it does come at a mental cost- she's not quite in a good place with having her blood constantly taken just yet. Her team and I are working on different strategies to help her. 

Now is the time that all the medications she left the hospital on start to get adjusted. Her anti rejection medication has a little work to do to be at even levels, they're going to walk her back on the caffeine intake, and start to cut down her diuretics. Hopefully by the time we actually leave Gainesville for a bit she'll be off a couple of them and working on coming off a couple more. Which is to say something- the sheer volume of medication she takes is overwhelming to me to just sort into her medicine box- I can't even imagine having to take it all. Yet she does it- most of the time willingly- occasionally she needs a bit of encouragement. She is very much a warrior.

So far we've had good days- with some rough moments but we're getting through them and adjusting. We spend a lot of time just being with one another, for so long there has been cords and lines and tubes that have made it difficult to move freely and impossible to just hug and cuddle. We are making up for a lot of missed cuddles. 

Harper starts school tomorrow, we spent the day on a video call with her- helping her pick out an outfit and what hair style she wants and picking out food for lunch. If cuddling Sadie is a bit of bliss- when we finally get home and get to snuggle as a family will be an answered prayer.

August 9 - An Eternally Thank You

Yesterday Sadie received in the mail this one little pink pig. It's always interesting taking Sadie her mail to see what catches her attention. Yesterday it was this little pink pig and Rose and I both have to say to whoever sent this little pig.....thank you, thank you, thank you. Sadie asked me to "hurry up and open it Grammie". Immediately, she named the little pig "Presley". She stroked it lovingly and gave Presley her bottle. Then she jumped off the bed and started playing and walking Presley. She talked to Presley like she was real. I even saw her replace the bottle with her finger so Presley could suck. Then she gave Presley her doll's bottle. It was true happiness watching Sadie play with this little pink plastic pig. This one little pig did more for getting Sadie out of bed, up and moving, lifting her spirits than all the coaxing they tried doing at the hospital.

Today in the mail Sadie received this crazy scientist kit which she just absolutely devoured. She kept asking Rose to "bring me more water, mom" and just sat there and played with that thing until we heard a loud pop and she said "yelp, it's supposed to make that noise". To be honest, it scared me a little and that is just what made it all.....normal.

She also received books. She took one and said "get over here gram, come play with me". My heart broke hearing those words. Harper, Sadie, and I used to play school all the time before she got sick and she said "and your name is still Susie" and we played for the longest. I will have to admit, Sadie is one smart cookie. It didn't take her long to turn to the last pages of the book and find the answers and then return to the lesson and fill them in. She's a funny, unique, incredibly smart, little girl.

I asked Rose what was Sadie's plans with all the flowers she is making. Rose said Sadie wants to take them home and put real dirt in them and make herself a flower garden.

Names don't usually come in the mail packages so we send a very grateful thank you to everyone who send Sadie, and Harper, gifts to help them get through this. We can never express this enough and sometimes it falls by the wayside with trying to keep the day to day, minute by minute, things going. Thank all of you.

We still ask for prayers as the doctors continue to monitor and tweak Sadie's medications during the next four weeks. As this part of her healing continues to be a roller coaster Sadie herself is up and about, walking, playing and slowly recovering her strength. She doesn't go far but each day she does a little more and for that, we say "thank you God, thank you to the donor heart's family". We are eternally grateful.

August 7 - A Walk to Remember

Sadie walked out of the hospital today. We had to take a few breaks on the way out, but she walked out. 

Her team came to me quietly yesterday and said that IF her labs came back well, and IF her levels remained in the green, and IF she had a good, uneventful night that MAYBE they would think about letting her leave the hospital. So as test by test came back good yesterday I waited, and when they came yesterday afternoon to remove her pacer wires, I held my breath a little, and as I went to sleep last night I hadn't packed a single thing yet. When I woke up this morning and heard the news: Sadie had an amazing uneventful night I almost got excited. When her transplant team rushed by this morning and said "she looks good, let us confirm some things we will be right back-" I waited. When the CICU team came in and verified her medication, and checked all of their boxes for discharge I started to pack- and in the middle of it I heard it- that one thing "She didn't get 730 labs done this morning" and my heart sank a bit. Her labs have to be done at 730 - not 8, not a quick fix, 730am or bust in order to measure the timing of her medication in her system. Every face in the room fell. 

And then something incredible happened. Every single person there started to figure out how to pull every string they have access to in order to get this lab done tomorrow morning- on a Saturday when all the labs are closed- and they did it. They jumped through all the hoops for her- so Sadie could walk out the doors today. So when transplant came back and gave the go ahead- all Sadie had to do was sit back and have her PICC removed and then put on her clothes- her actual clothes- a tshirt and skirt she picked out to walk out in. Shoes. She hasn't worn shoes since June. She put on shoes today. As she walked out of her room the hallway was lined with her nurses and doctors and techs and every worker she's touched and they had pom poms they waved for her as they celebrated her walking out the doors.

Today Sadie walked out of the hospital.

We will stay here in Gainesville for the next four weeks. Now starts Sadie's clinic time. We report to the transplant clinic for testing and monitoring during that time- and we see where it takes us. 

Today- God brought us to the next step. 

August 5 - The Power of Hope

I will start with: Sadie's biopsy came back negative- she is NOT IN REJECTION! Thank you God. All of her numbers from yesterdays testing came back good, the status of her heart is good. It's healthy.

It is completely healthy. Read it again, say it out loud, shout it like I did. Celebrate.

Sadie's heart maintained it's numbers last night, it did dip slightly lower than a normal rate last night but it stayed above the bench mark the doctors have set for it. She's also maintained a higher rate today as well. I think we are all cautiously optimistic. The fact that her heart function and numbers and testing has all come back good, and the fact that she's starting to improve with her rate points to the likelihood that her body is slowly shedding the pre transplant meds and as it does so her heart can function as 'normal'. I do say cautiously optimistic because this is only one day and we have to see improvement across many before that can be believed. The EP cardiologist said "we're not out of the woods of needing a pace maker but everything does look good". So it has to continue to look good before the pace maker plan can be pushed aside. For now everyone is ready to go in case she does regress and ends up needing to have one implanted- but the hope is that it's just an emergency plan and we wait and watch her improve.

Her transplant cardiologist said today "We're okay with her having a pace maker but that's a life long change- we don't want to make life long decisions when she's very stable and we can wait and monitor- lets spend an extra month watching if it means avoiding having another invasive procedure and not having to make that life long change".

Yesterday was full of a lot of emotions, but one of the brighter spots came in the afternoon when the child life specialist from the pediatric floor came by to visit Sadie. She brought her painting the floor had made- its a heart that has little white hearts in it- the white hearts are made from each of the nurses and techs and child life staff members down there- it's their thumbs made into a hearts with their signatures beside them. At the top it says "the power of hope"- when Sadie was down on the Pediatric floor, Julia had asked her what her super power was and Sadie replied "The power of hope".

So we wait- but we do it with better numbers today- and we do it with a whole lot of hope.

August 4 - We Feel Your Love and Prayers

I asked Rose if I could provide today's update.  Sadie was very nervous and scared for today's CATH.  She asked Rose last night if they could pray and asked her again this morning to pray.  The CATH and electrical test took about two and a half hours.  The doctors are satisfied with the electrical results.  They also took a biopsy and we are waiting on those results.  Rose will provide a better update tomorrow.  We continue to ask for prayer.

I wanted to provide today's update because I wanted to share more of how it went.  As Rose and I are waiting in the waiting room we see them wheel Sadie back into the ICU.  Rose could not go back yet until they got Sadie resettled.  After about ten minutes we hear a child screaming in pain, crying, and yelling to STOP, STOP.......IT HURTS......and we knew.....we knew that was our Sadie.  Rose immediately jumped up and I know if she could physically she would have knocked those doors down.  How traumatic it is hearing your child scream and cry out like that and you can't get to her, just to hold her hand, say you are not alone.  After about five minutes the nurse came out and let Rose go back.  About two hours later I received this text "She's finally starting to feel a little better, she had to stay laying flat for 2 hours".  "Still waiting on biopsy but all the docs are happy with everything else".

I wanted to share with all of you how grateful Rose is for your love, support, and prayer.  Today she had to dig really deep down and gather the strength to get through this and it helps so much knowing she's not alone.

I just delivered dinner to Rose and Sadie.  Its going to be a special themed dinner.  One of Sadie's favorite movies is coming on that she has been looking forward to and Rose is making it special.

As Rose and I sat there those two and a half hours we talked about a lot of topics but the main topic was Sadie's mental health.  It's extremely hard being on the 10th floor in ICU with literally nothing to do.  A lot of people ask how can they help and we ALWAYS say prayer because we truly believe there is power in prayer.  But sending Sadie a card, letter, or even anything from her wish list really cheers her up.  Right now Rose said Sadie is on the flower blossoming kit kick.  She would be happy to make a million.  

I can hear Rose now saying "mom" so I better get off.  I will leave you with the last text I just received from Rose "she ate a lot of dinner, it was really good, we had a feast, it's the most I've seen her have since we've been here.  I think it's the most I've had since we've been here.  Small celebration dinner".

Thank you God.

August 2 - August

Somewhere between the pediatric floor's dog visits with Sally and the CICU starting to walk again- and then moving to a smaller room- it became August. 

I want to write to you and tell you that we've made so much progress and that every day is a step forward and that it's all smooth sailing-- but the truth is that it's time for a small rest on this journey. So many people have told me that sometimes you're going to have days where progress is moving backwards and I never really grasped that- until now. 

Last night Sadie's heart rate passed the lower threshold that the team set for her to maintain- and she had the most intense night of arrythmias that she's had in a while. It was scary. The rough part was that the nurse had to wake her up every time her heart rate would dip too low- the good news is that Sadie was fine every time she checked in on her- her mind was good, mentally she was 100%, her blood pressure was good- it was just her heart that was having some trouble figuring out what beat to catch. The big question is why. Unfortunately there's no real answer here yet- and it's still believed that the medication built up in her system from pre transplant is the culprit- so- we wait. Last night was a reminder that this is still an uphill journey and there are some bumps along the way- and sometimes those bumps are going to knock the wind out of us. 

So we wait. 
We pray. 
We build all of the legos, color all of the pictures, dye all of the paper flowers, do all of the science experiments, and have Sadie ask every single doctor and nurse 'when can I go home'. 

July 30 - Family

Sadie has spent the last two days and nights completely unplugged from her heart pacer. Her rate does go very low at night but it's expected and it's still doing it's job. The transplant team is confident in the rate and rhythm and would like to have Sadie moved down to the pediatric floor or discharged in order to begin clinic time. Unfortunately the transplant team is only one aspect of Sadie's care team and the CICU team isn't as confident in her rate being so low and want to continue to monitor her. The current plan is for Sadie to have her first heart cath on August 4th. The hope is that her pacer wires can be removed during that procedure as well. Depending on the outcome of the cath she will either return to CICU or go to the Ped floor.

We are at the point in this marathon that waiting is the very hard part. Sadie is done being hooked up to the same pole and wires, she misses home, misses her dogs, and just misses some sort of normal. Her team is working hard- very hard- to get her to the point that everyone is happy and feel that she'll be safe to take the next steps.

Today Sadie got a very special visit. Typically CICU does not allow dog visits, but they pulled some strings and got a visit from a labradoodle named Finley- Sadie loved getting Fin time and got a special snuggle. It was a beautiful gift.

The transplant team also requested that Will and Harper come down and go over care moving forward. Transplant effect the entire family and they make sure to care for the entire family. It's been an extra special couple of days with a visit from Harper and Will both days. Yesterday we went over medications, activities and general life moving forward. Today we went over mental health and care for our family.

I know I usually update you all about Sadie's journey- but today I want to mention Harper too- I hugged her tight yesterday and my mom heart shattered when I finally got to see her again. This entire experience has been a whirlwind on all of us- and Harper has felt the brunt of some blows too. Lately she's struggled a little with having Sadie and myself gone from her for an extended period, she's also struggling with having such a major event dominate her life too, in a world of being ten and in this storm- she's just trying to find some normalcy. I go to God and ask that he keeps her and Will lifted up. Will is also a huge champion for us- the table was flipped and he's not missed a beat with picking up all of the slack that I drop.

I pray that we're almost at the close of our CICU journey but I am well aware that we're looking at another half week here at least. It's the feeling of being in a revolving door and wondering when it's going to be time to get out- I think we're approaching our stop- we love and miss you all.

July 28 - An Extended Stay

We have hit a bit of a bump. Typically around this time in the healing process heart transplant patients are being transferred down to a less intensive floor or being discharged from the hospital and begin their days at the clinic. Sadie's entire team is trying to make that happen but Sadie is a bit of a unique case. 

With Sadie's carvajal syndrome there's not much in terms of medical literature on the disease itself - there is even less on patients that have had a heart transplant that have it. In fact her entire transplant team is doing a full medical case study on her and have asked for permission to publish papers on her. 

Currently Sadie's heart rate is on the lower side- which could be very normal for her and they expect the rate the increase when some of the more potent medications she was on pre transplant move out of her system- but it could take months for that to happen. They have put her on caffeine to help increase her heart rate as well. When they first told me about the caffeine I immediately pictured Sadie sipping on a morning cup of coffee with me- don't worry, it's just a small pill she takes in the morning with applesauce instead. 

There are two path's forward from here. One is that she has to have a pacemaker implanted. Because of her size and the amount of growing that still has to happen no one is eager to have this be the route forward unless necessary-and it very well could be. The other option is that we give her new heart time. We watch it and make sure it's still doing it's job while it's waking up and her body is still working to get the old medication out- time could very well be the answer.

Tonight is the big test- they've set her lower parameters extremely low- they are going to see how low her heart rate goes on its own without intervention- while constantly monitoring it and making sure that it's still doing it's job at such a low rate. It's nerve racking for everyone involved except for some very calm EP cardiologists that completely grasp the concept of a brady heartrate being completely fine for a very unique situation- the amount of times I've heard the nurses say "I've never really seen this before" is abundant. She's different. But she's healthy and God has her- she's ready to show to the world what she can do with this new heart, we just have to have faith that a little bit different of a beat is just the music Sadie marches to now.

Another day- another science experiment while we wait. Thank you all so much for your support and your love and especially for the activities to help Sadie pass the time.

July 26 - Electricity

Sadie was moved from one of the main larger operational rooms to a smaller side room in the cardiac ICU- this was a BIG step. She has a big window that overlooks the UF campus, and a whole lot less machinery attached to her. It also happens to be the room closest to the exit doors. She made note of that when they brought her here and her nurses joked that she wasn't allowed to make a break for it yet. 

Her transplant team is hopeful that she'll be allowed to move down to the pediatric floor sometime this upcoming week- however- we've hit a little bit of a hiccup. 

Sadie's heart has a bit of an electrical mix up. Because of this mix up her heart rate drops to very low rates- last night it got a little too low for everyone's comfort- even though it was still working very well and her body was being adequately taken care of by the heart- her trend to a slower heartrate since they've disconnected the pacer cables- was a bit of a concern. So around 1am last night they decided to reconnect her pacer cables just to be cautious and try to regroup today with a plan.

Her doctors just stopped by and were weighing options, caffeine is on the table for treatment but they're concerned that the caffeine will also raise her blood pressure- which is already being treated to for being a little too high.  Instead they have decided to try to a medication that can increase her heart rate and as a bonus it's also good for her asthma. We are hopeful this will be a good option for her because if they can't control it with medication the other option is to have an internal pace maker- I can tell you that no one here wants that for her- they are going to exhaust their options for rate control to help with the electrical circuit first- but it is a last resort option. 

Sadie is none the wiser about any of this- she's happy and awake and back to her normal Sadie self. Every day she asks when we get to leave because she feels better already- and she's "done being in the hospital". We have been running through activities and games to try to keep her mind occupied and distracted while the team works hard on getting the last pieces of her heart sorted. If she could write on her window she would say "send dogs". It's the one thing she asks for multiple times a day. Unfortunately because we're in the CICU there are no therapy dogs allowed- but hopefully we can go down to the ped floor soon and she can get some dog time in. 

Lots of love and prayers, lets hope no pace maker is needed. 

July 24 - A Note from Rose

I'm sitting here in an ice tundra writing to you because Sadie loves to keep the room as cold as possible post transplant- her team says that the transplant meds can make her feel like she's running hot and be sensitive to the heat- so I'm in a bulky sweater in late July and I can't help but smile.

Sadie is across the room taking a nap- her first real actual natural nap since the operation. When Sadie got out of surgery she had two small needle size probes inserted into her heart externally to help pace her heart. Today they stopped pacing her heart and let it go off on it's own- her heart is beating all by itself- no supporting drugs, no IV medications, no electrical pacing signal- just the beats that it wants to do- and its a beautiful thing. As she's napping her rate does drop lower than most- but I still can't help but smile because two weeks ago when she slept her heart would dip even lower than it is now- her team is happy with the slower rate, they say "She's got a big heart" and I smile every time because this isn't news to me- its just that the physical size matches the love she's always had. 

I sit here and watch her breathing- and I take my own deep breaths and realize that I can breathe too. For the first time in a long time I feel this sense of peace and joy. I felt the need to reach out to all of you and say thank you- I have been in the deep end with Sadie during this and very rarely come up for air, but you all have sent me bubbles of air to breathe in the dark, giving me support line after support line to be able to hold onto- and I am so incredibly grateful for all of you. 

Sadie is yours too. We have felt your love and prayers and kind words and encouragement and cheering. I have felt you holding my hand in the dark moments, holding me during feelings of uncertainty, and celebrating with me during the good moments and cheering our girl on. 

Our family has grown- you have answered our call for help and prayer and love- thank you. Thank you all so incredibly much.

July 23 - Grateful for Another Day Forward

When I went to sleep last night the evening nurse was working on weaning Sadie off her IV blood pressure medication. It's something the day nurse had almost completed but then Sadie had a violent rebound when it was completely weaned and they had to go back onto the IV medication and administer more of an oral dose to help balance it. Its been the theme of her recovery so far, increase one thing to decrease another and keep going until there's a problem- solve the problem by any and all means and then move along. When I woke this morning Jordie, her night nurse, had already switched with the day nurse, but she had done it- she got Sadie all the way off both IV drips that controlled her blood pressure. I'm going to hug Jordie the next time I see her. Sadie was able to have her central line in her neck removed this morning because of it.  

Earlier this afternoon after proving to be stable all day they made the decision to remove the arterial line in her wrist. She will continue to have her PICC line until the day we leave the hospital but having those lines removed were HUGE in terms of progress, comfort, and her ability to be more mobile. 

Sadie has gone on four walks today down the hall way- that's a record for her. She's also able to start to stand at the sink and brush her teeth since she doesn't have the bulky lines any longer. 

Her Kidneys are playing nice since their jump start and have been working well- today they will stop the medication that makes them work harder and allow them to do their own pace again. 

Now it's time to focus on her new heart- her big big heart that holds all the love she's been getting. It's pushing on her lung and causing it to partially collapse because of it's push- the team is keeping any eye on it and making sure there's nothing trapped in it- no fluid build up- no pockets of air not moving- and it just might be that her big heart will always push on it- that's to be determined yet. 

The heart itself is also still being externally paced- we will address that tomorrow- but for today- we bask in the victory of everything that is working and give the rest to God. 

She's amazing- Sadie is an absolutely incredible little lady.

July 21 - Sweet Sleep

Today was a good good day.

Sadie has been cleared by the GI team to start solid foods. She immediately asked for strawberries and veggie chips. She’s been slowly eating but she’s had no trouble so far.

Sadie has also been taken off the high flow supplement oxygen and moved to a regular nasal cannula that’s slowly being brought down. 

She had the dialysis line removed today.

She’s starting to come off all the extra heart support medications that transplant patients are on when their new heart is “waking up”. 

She went on three walks down the hallway today and is able to stand all the way up. She still has to take breaks and sit several times during these walks but they’re becoming longer walks with less breaks as we go. 

Sadie is down to only Tylenol for pain- which is amazing. She doesn’t complain about things hurting unless she gets pushed on or rubbed the wrong way. 

Moving forward we have to keep an eye on her heart function and hope that it gets happy now that she’s less swollen. Her new heart is big big- which is fitting for Sadie- but it does push on her lung, so as she comes off the lung support medication she has to do a lot of lung exercises to make sure her left lung stays strong and can move air healthily. 

Sadie’s blood pressure is also a bit of a problem- if her heart can get back to being happy post the kidney upset then she should settle out but in the mean time there’s a large line that has to be towed.

The absolute best news I have is this: Sadie slept all through the night last night- and as I’m sitting here writing this she’s nodding off after a very eventful day today. 

The nurses and doctors and providers here are absolutely top notch. They have been so incredibly understanding and kind to us. They hold Sadie up and encourage her every single day. They give it their all and it’s been a huge part of why Sadie’s starting to mentally recover. It’s going to be a long road but she’s overcoming a lot of that initial anxiety that had her fight or flight triggered at every little movement. 

Thank you for doing this with us. While I sit beside Sadie every step of this I can’t thank you enough for supporting our family, supporting her- and supporting me. 

We’re back on the climb up the mountain- I’ve never been more grateful.

July 20 - One week Post OP

Sadie has been working hard on recovery.

She has turned a corner with her kidneys and they seem to have responded very well to the aggressive medication route. Yesterday alone her body shed 2.5 pounds of water.

The additional chest tube that was placed shed over 400ml of fluid from her lungs and did its job to the point that she had all three chest tubes removed today.

She took two small walks down the hall today. She’s still very shaky and needs to take frequent breaks and be supported via her pelvis- but she’s taking the steps.

Sadie’s blood pressure is still very elevated and has to be controlled via meds but I’m reassured that it’s very routine post major surgery and her body is still trying to get itself sorted.

She also has been having blood in her stool. The doctors took a very aggressive approach to make sure it wasn’t anything major and have decided that the likelihood of a big bleed in her belly is not suspected and it could be a couple of small things, they are moving forward with her clear diet and monitoring closely to make sure it’s nothing major being missed.

The biggest hurdle we have right now is sleep- or the lack of it. Sadie hasn’t slept this week on her own. The rest time she’s had was all induced by procedure sedation- which was not an abundance. She mentally is still processing everything and recovery physically is difficult but recovering mentally is exhausting. She’s holding onto a lot of fear of sleep from the fear of sedation sleep- but the team here is working very very hard to get her to a good place mentally and get a sleep break.

Overall Sadie has made some big big steps over the last two days. She’s an absolute fighter and she’s working hard to be able to come home.

July 18 - A Little Sadie Update

It’s Saturday.

Sadie’s Kidneys are trying. The doctors are okay with her output for the time being and are holding off on dialysis. They did place the line yesterday and the machine is moved to our room as a precautionary measure- she’s very much flirting with the line of needing it or not. As of this moment- her kidneys are hanging in there from their jump start yesterday. 

Sadie’s new heart is also having some trouble. The heart is big and needs swelling to go down to not be smushed- but Sadie is very swollen as she’s been retaining a ton of fluid- her body is working to try to alleviate that but it’s taking time. So while her Kidneys are having trouble they’re also causing trouble- but the doctors are focused on getting her Kidneys in good working order and hopeful the heart will follow suit. It will just take time.

Sadie started to express that she’s hungry today. Which is amazing, the doctors were going to give her until tomorrow to start eating before they inserted an NG tube or did IV nutritional supplements. We’re still flirting with that as well because she’s having a hard time keeping the nausea at bay after a bite. She’s starting with clear liquids and moving to broths, we will see how she takes it. Slow and steady.

Sadie is much more aware today. She’s talking to all the doctors and nurses- she’s very responsive and able to articulate what’s bothering her and how she’s feeling. She’s definitely a bit mentally overwhelmed today. Up until now she’s been under some form of sedation or heavy relaxant. Today was Sadie’s first real day of seeing/feeling everything that’s going on fully and really taking it in. She’s learning how to manage her pain slowly. 

The greatest news of the day is that Sadie was able to get out of bed (with help) and stand. She even took several steps to the bedside lounge chair. She did this twice so far. That’s some serious work for her. Tomorrow the goal is to walk down the hallway. 

We’re still in the woods, but she’s making progress. The entire staff here is absolutely incredible. I know God lead us here- and he blesses her with angels in nurses and doctors every single day.

July 17 - A Hard Couple of Days

Sadie had a really rough night. She hasn't slept through the night since the transplant and we were hoping she'd be able to get some rest last night, but she was up in pain most of the night.

They found that Sadie's lungs are retaining fluid, they were able to get her out of bed and she walked about 20 feet yesterday and she's started to see respiratory therapy every four hours. Her lungs were slightly less filled this morning but they still had a good amount of fluid in them.

Sadie's entire body is also retaining fluid and her kidneys aren't doing their job of detoxing her body and expelling the fluid, there have been several attempts to get them to "wake up" again via medication, but so far nothing has had a good effect. While she was able to walk down the hall yesterday she could hardly stand up today.

They've decided to start her on dialysis, place a third chest tube, and place a new PICC line to replace her IJ lines. She's currently under heavy sedation for the procedures.

Please pray. It's incredibly difficult to watch her be in so much pain and having to fight through this.

July 15 - Sadie Gets Her Heart Pillow

Today’s update: Sadie sat up today, was able to stand up and take two steps and sit in the bedside chair. She stayed in the chair for several hours (sleeping) but she stayed. The movement helps her lungs drain any excess fluid and gives her body a different position to be in. 

It was hard. It hurt. A lot. She yelled at her nurses the entire time. But she did it. They gave her the heart pillow to grip onto. The pressure from hugging it helps alleviate the pain she’s feeling from moving. 

They’re starting to step her down on her medications which will keep her more awake and aware- but will also cause her to feel a lot more. It’s a necessary step. They have to get her off her suppressing meds to be able to access her heart function off it. The doctor is hopeful in the next couple of days her chest tubes will be able to come out and that will be the turning point in a lot of her pain. 

Sadie also started to cough on her own today- which her nurse said for two days post op was very impressive. 

They continue to monitor her blood work and the function of the rest of her organs and tweak her medication as needed. Currently our downfall is fluid- Sadie’s body is holding on to excess fluid which is putting pressure on her heart. They’re working to shed that fluid and hopefully she’s able to get it off and keep it off. 

Overall it was a good day. We’re inching our way forward. 

July 15 - Sadie's a Warrior - 1 am Update

Sadie is a warrior.

She had her breathing tube removed and replaced with a high flow pulmonary cannula last night.

The goal for the day was to try to get to a sitting position- that goal was scrapped when Sadie’s stats started to trend down and then in a blink of an eye she started to dip on everything. They found two things. The first is that Sadie’s new heart is big (it had to be to fill the space of her old heart since it was so enlarged) but because of the way it’s sitting it’s having a hard time squeezing at the top. They’re confident that when swelling goes down that the squeeze will increase and that she’ll grow into the new heart.

The bigger problem today was that Sadie had a medical IV line in her neck that was leaking. It could have happened at any time, she’s sedated and eight- she doesn’t have any real control over her head and the way she moves it right now. But because it was leaking she wasn’t getting the meds they’d been sending through that line and her body was suffering because of it. They were able to increase other meds and get everything back on course by rerouting those meds to her PICC temporarily and then sedating her further and replacing the IJ line. Sadie spent the majority of the morning battling the problem and then the majority of the afternoon asleep from heavy sedation.

When she came around this evening she was able to sip on water and she’s been speaking to me and her nurses. Unfortunately she’s in a lot of pain, so the majority of her talking is telling us she’s uncomfortable or asking to be repositioned. She also still has a UTI and a small fever associated with that- however it’s much better than yesterday.

Her lab work this morning wasn’t looking the best but all afternoon her labs have come back trending in the right direction and look much better.

The doctors have said the next couple of days are going to be a roller coaster- it’s a marathon and we take it one day at a time. They are all happy with her progress and think she’s a rock star.

As long as she stays in the green the goal for tomorrow is to sit up and try to stand.

July 13 - In the Belly of the Beast

Nothing compares you for seeing your child in their most vulnerable state. Tubes, cords, eyes half lidden and having the machines do all the work for her- This is hard.

I want to lead with Sadie's transplant surgery went very well- the surgeons were very happy with the heart and how everything turned out for the procedure itself.

Now's the hard part- the healing part. 
Sadie is still intubated, they are preparing to extubate her tonight. 

She also has a fever, which is not uncommon post procedure but it is something they're monitoring and trying to mitigate. She also has a UTI which she's getting antibiotics for. 

Keep praying, keep sending all the good vibes, the battle was won but the war is far from over- she's got a hill to climb right now and all we can do is pray for her and will her on. 

Come on Sadie girl, you can do this. She is strong- and we're in an amazing hospital. And we're not alone. 

July 12 - A Day to Celebrate

Today was Harper's Birthday- I woke up this morning and sat beside Sadie's hospital bed, still in sweat pants and a tshirt and started to gently wake her for medication. 

There was a knock at her door and when I looked up and expected to see her nurse with meds instead stood three of her cardiologist. Her transplant doctor asked me "have you heard the news?" and I didn't dare hope for what he said next "We've accepted a heart on her behalf". 

Today- they accepted a heart for Sadie today. 

They checked her out and Sadie and I just nodded and smiled at them until it was just the two of us. I looked at her and said "They found your heart" and I cried happy tears and she cried happy tears and we called Will and Harper and they cried happy tears. 

Instantly my heart soared for the possibility that tomorrow Sadie will go through surgery and have her angel heart- but I wont lie, the mother in me grieves with the mother on the other side of this. I'm very aware that in order for this miracle to come to us that someone else had to make the choice to have their child be an organ donor- my heart stays with that family.

Sadie is a bit nervous "because it's surgery" but is "also very excited and ready to have my new heart". 

I can't help but smile at God- his timing, not mine- Happy Birthday Harper- they found your sister's angel heart today. 

Sadie goes into surgery tomorrow- sometime- there are no details at the moment. I'll keep you updated.

July 6 - This is Hard

"This is hard" It's what we say when trying to accomplish something new- something completely unfamiliar, something that we watch others do and assume it's easy until it's our turn. Inevitably there's always someone along the way that says 'nobody said it was going to be easy" and I can honestly say that through every new turn this journey has taken us so far that is the one firm constant- "this is going to be hard" has been uttered in every doctors office, every hospital room, every side hallway doctor conversation- but its always followed by "but you can do it" or "she can do this" or "we're right here with you, you're never alone". The past few days have been a testament to that.

This is hard- and- we're not alone- and- she can do this. Sadie's vitals have improved, she even has a small appetite in the afternoon, of course it's never for hospital food but we're working hard to make sure she's got things she'll eat. She loves to snack on things right now. I imagine it's because it's easier to just eat a few bites of something multiple times over an hour as opposed to an actual meal.

She got her first real mail delivery today and just the pure joy that she had mail when the nurse dropped it off was enough to make me tear up a bit. We were trying to build with magnetic tiles on her table but it was just too small so we put a sheet on the floor and sat down to build a small city and one of the child life specialist came in and said 'I'll bring you a cushioned mat" and just like that we had a soft place to build. She also has a favorite nurse here, he works so hard to make Sadie feel comfortable and not rush her and encourages her. He saw today that she was struggling in the morning with the added medication she has to take because it's a lot of liquids all at once and mentally Sadie is over it. So he looked into it and found that the large one that has a nasty taste to it can be taken as a very small pill- he advocated for her and her doctors approved it and starting tomorrow morning she'll have one less yuck liquid to swallow and an easy pill in it's place. This is hard- but we're not alone- and she can do this.

Sadie takes every chance she can to learn about what's happening to her. She takes special interest in anything that touches her. She likes to put the pulse ox on her finger herself, she likes to place her tele stickers on her chest herself, she likes to help pull dressings off and learn how to replace them. It calms her anxiety about it if she can be involved with it- and every single nurse here has been amazing about keeping her involved. They explain medications and stickers, and the different dressings and why her legs have to be straight and where the pulse points are for her blood pressure and why it has to be within parameters for medication and what parameters are. She had a whole conversation about tapes and skin irritations the other day with a nurse- you would have thought it was two coworkers talking and comparing notes. This is hard- but we're not alone- and she can do this.

At the end of today she said "Today was a good day". She ate two whole pieces of vegan pizza (still with pesto), she fist bumped her favorite nurse when he left, she took all her evening medication, and she snuggled up with her sheep and went to sleep. I opened my phone and my heart took a huge breath as I saw all the messages of love from today. I can't begin to tell you how much it means to me to know that you're doing this with us. That I know that she's prayed over and loved on such a large scale- that Harper is looked after and loved- that our entire community wants to know how they're doing- my heart is full.

This is hard.But God is holding our hands- and he's given us all of you to walk with us- we're not alone.

She can do this.  

July 3 - Everything in Balance

Today was rough, tough, and downright heavy. I think I should have seen it coming, Sadie had several good days where she's started adjusting and her body had responded positively to medication; and emotionally she's been tending to her self care with art, crafts, movies, and enjoying the surroundings of the medical floor and all it has to offer.

Today was not that. Today was a reminder of why we're here.

This morning started by hopping on the grumpy seat and sliding all the way back down that beautiful hill we'd just climbed. Sadie didn't want to eat, her vitals were trending in a downward fashion, her blood pressure lowering, her arrhythmias flaring, and her entire mood was off because of it. When you feel physically lousy it's already the pits and then not eating makes her feel even worse- and having to take meds on an empty stomach also sucks- and then still having to participate in sterile dressing changes and cleanings - it was all a bit too much for her. 

As her Momma it breaks my heart to see it, and being the one she feels safest with means she feels safe to let out her hurt and anger and frustration- and it's heavy- She's eight and she's already had to face harder challenges than most adults. The thing that gets me is at the end of the day no matter what kind of day she's had Sadie still asks to pray for the little boy across the hall who's also here for a transplant. Her heart might be physically hurt, but it's so full of love. 

When I first found out Sadie would need a transplant I joined a couple of transplant support groups. One thing that is echoed in them is this: It's a marathon not a sprint, and sometimes progress is as simple as not moving backwards. 

I leaned on that advice today. Today was rough, it was hard, but I have to take solace in the fact that she's not worse than she's ever been before, her heart is just sick, and some days that sickness is going to knock her on her butt and make itself known more than others. 

By the end of the day Sadie did ask for food (thank you God) and managed to eat a little. She's still on the lower end of her stats but I'm praying for a better tomorrow. Moana came on the Disney channel tonight, she perked up a bit during the day when she was looking forward to it and asked to draw Moana on the window. We played the soundtrack and for two glorious songs I got to hear her sing and smile.   

June 30 - Where is God
There's a line in one of Sadie's favorite shows that the main character had felt like God had left him. That He didn’t care, that He gave him too heavy of a life to bear and he finally feels Him and says "...and I think back to that moment where I asked you “where is God” and I want to scream He's right here..." and then he goes on to list all the small moments.
I can't help but think of that line every day. I see Him every day. He's the daily text messages checking in on us.
He's the tech that we haven’t seen in a week remembering Sadie’s name like they’re best friends.
He’s the music volunteer that brings extra instruments because she mentioned that she loves the piano and drums.
He’s the nurse that moves so slowly with her even though he’s got a list of things to do but doesn’t want her to feel overwhelmed by even the smallest task.
He’s the friends that say “I thought of you all today and just wanted to tell you” or “I found the perfect thing to make her smile, I'm sending it your way”. 
He’s the other transplant family down the hall from us going through the same experience and their love and support like we’ve known each other all our lives.
He’s the online support groups with hundreds of words of encouragement.
He’s the perfect scripture finding its way to our eyes and ears.
He’s the prayer train going all the way around the world and back just for her.
He’s the DoorDash driver that waits an extra ten minutes because I got caught up in a task and then stopped on every elevator floor- and still smiles when they hand me my order.
He’s the janitor that greets her every single morning with a huge smile and knows her name and prays for her. 
He’s the nutritional aid that sneaks her extra vanilla almond milks so she’s never out when she wants it. 
He's the facebook post where a tired Mom can just 'let it out' and get so much love to help renew her.
He’s here. He lives so boldly here. Sadie asks me “Momma why would God give this to me?” And I can honestly tell her “so we can be closer to Him”   

June 27 - Hello from the ICU
Today is Saturday the 27th of June and Sadie is in the ICU at Shands, she's been taken off some of her heavier medications and had some reduced down so they could start her on milrinone. They did have to sedate her to place her PICC line. Previously Sadie was able to tolerate having lines placed easily but she's had so many done over the last couple of months that she carries some fear and trauma from them. 

The plan moving forward is to step up the amount of milrinone she's on until she reaches a higher dose and then the clock starts in terms of being able to list her at the top of the transplant list. As long as she can tolerate the higher dose of milrinone they will allow her to leave the ICU for the Ped floor while we wait for her miracle heart. Milrinone is an amazing medication that helps with the health of Sadie's heart and how it contracts. It's a miracle drug for cardiac patients. Sadie's condition does create a lot of arrhythmias, so it's a fine line of dialing back on the medications that control her electrical rhythm. 

Sadie is starting to ask the hard hitting questions. "Momma, why did God make me like this? Momma why do I have to go through this? Momma I miss being normal" And it hits hard every single time. I've seen a saying lately, and I firmly believe that God puts them in front of me when I need them, but this one is "I asked God why he led me through so much darkness and he responded "So you know the way out when I send you back in for others". One of the things Sadie has continued to say to all of her providers is "I want to be just like you when I grow up. I want to help kids like me because I know what they're feeling"

My heart is full, this journey is going to be long but we're doing this together, God, our family and yours, Sadie's whole medical team, thank you for being here with us, thank you for supporting us, thank you for taking this one inch at a time with us.    

 June 26

They just took Sadie back to do her PICC line and place her in the ICU. We are hoping no sedation is required. This little girl is so so strong and amazing. I believe in my heart that God has plans for her.I will update when it’s over and she’s awake.

She’s got her PICC and is happily eating! She’s started on her IV meds, will be monitored in the ICU for two days before we move back to the pediatric floor to wait. God is good.  

June 25
We have made it to Shands and been admitted. Sadie has had her first line placed and we will be moved to the ICU tomorrow to have her PICC line placed and started on IV medication. We will spend a couple of days there and as long as she’s doing well with it we will move back to the pediatric floor while we wait for her miracle heart  

 June 22 - Status 1A

UF called this morning, the entire team has reviewed her case and evaluation and Sadie is being listed as a priority transplant- status 1A. Which means she will have to wait in the hospital while we pray and wait for her donor heart. They are working on preparing a room for her and will let me know when one becomes available.I'm getting ready to pack a suitcase for her and myself to begin our adventure there. I've taken to packing two suitcases for the hospital- one with clothes and necessities, the other with art. This means it's time. It's time to start wrapping up life here in the home that has treated us with such loving care. It's time to kiss Harper and Will and hug them tight and begin our video calls and phone calls daily. It's time to start to figure out how to bridge the life from here to there. Our family will be moving to Gainesville. The panhandle just doesn't have the advanced care available that Sadie needs. We have an unknown amount of time to wait for a miracle heart and then we will have a solid year of recovery and checking in with specialists. We've decided we don't want to spend that time away from one another and we want to keep Sadie where she will be the safest. I'm scared. I ask for your prayers. God knows. He's leading the way here. I know this is the path he would have us walk. I very much feel like a child dragging their favorite blanket in the dirt in protest on this walk- but I know the view he's giving us will be worth it. Stay with us please.A lot of people have asked "what can I do, how can I help, what do you need?" -Pray-Dinner Meals for Harper and Will while we figure out our next steps.-Boxes- If you have moving boxes, we're going to need them soon  

June 19 - The Last Evaluation for Transplant Eval
We went into UF today for the last of testing for Sadie's heart transplant evaluation. 

I can't say enough positive things about the entire UF Gainesville team. They are kind and genuine people that make us feel like family. We had to get up early for Sadie's first imaging appointment and unfortunately she had to fast so as the morning went on and she couldn't eat and still had to take all of her medications- she started to feel a bit lousy. BUT the entire team helped her, supported her and got her through it. 

We met with Sadie's newest doctor today, her oncologist. Unfortunately they did find that she's predisposed to a higher risk of cancer based on her genes- fortunately it's something we are aware of now and can keep an eye on before it becomes a major problem. After her transplant Sadie will be on medication that suppresses her immune system and raises the odds of the cancer manifesting. The positives here are abundant, the type of cancer that she's tested for is a very low "good" kind, it doesn't manifest until later in life, and the brightest spot: she now has an amazing oncologist that's already on her team. He's already planning on how to follow up post transplant and the different ways we can deal with anything that may arise.

The last bit of our day was a true blessing. Sadie needed some special imaging done and it was going to require contrast dye which would require another IV for her- Sadie is kind of tired of being poked and prodded, the thought of another IV so soon really bummed her out. BUT her newest doctor was able to give us the good news :  NO DYE NEEDED. Small miracle. Thankfully she didn't have to have another IV and the entire imaging took about 5 minutes. 

We needed this win. Sadie needed it, I needed it. An easy day of testing with people that are kind and very good at their jobs. Thank you Jesus. 

I'm happy to write that as I'm sitting here updating you all Sadie and Harper are enjoying pizza- She's eating so well today. Shout out to Blaze Pizza, they make vegan pizza and do sides of pesto sauce for dipping. Sadie approved. 

Thank you for being a part of this journey with us.   

June 18 - On the road to Gainesville
Sadie has the last of her testing for transplant eval tomorrow. The last week has been a little rough for us. Sadie had an infection that started to affect her incision site and caused a bit of a scare. She’s been on some extra rough meds that have been paramount in clearing it up but it’s hard on her especially mixing with the heavy meds she’s already on. But! The infection is clearing up, her wound sites look a lot better, and we’re in the home stretch of this major testing. Lots of positive thoughts and prayers. Sadie is starting to dread being poked and she will need another IV for tomorrow. She’s such a strong amazing kid but it’s never easy facing fears when you’re this little.  

June 11 - Pensacola Trip- EP Cardiology update
Sadie, Harper and myself (mom) took a trip to Pensacola today to meet with Sadie's EP Cardiology team. They tested her device and found that the lead might be slightly displaced. They were able to do an X-Ray immediately and are confident in it's position at the moment, but we will have to monitor it. Sadie's still a couple of weeks away from even being able to lift her arm up again. 

They were also able to remove the suture that held the incision at the very end. Her body has closed the majority of the surface wound but there's a small infection at the base which they were able to clean and steri strip close as well as add a antibiotic to her medications. On the plus side Sadie was really excited to pick out some fun silicone scar tape from Amazon, she was hoping to find some with butterflies but we could only find flowers, so if anyone has a lead on butterfly silicone tape- send it our way.   

June 3 - One big step forward

From the start of Sadie's heart journey one of my best friends told me 'You take this one inch at at time, every inch forward is progress" and I have held on so very tightly to that saying. The last couple of weeks we've been in limbo with Sadie's medications and trying to get all of her additional testing done for her completed heart transplant evaluation. There are two major tests we have to complete before the process can move forward and they have to be done in Gainesville with very specific doctors. We are grateful to have gotten confirmation today that we are officially scheduled for the week of June 15th to complete these tests. To say that this is a small miracle is not an understatement. UF is an amazing facility- and they treat a lot of patients and a lot of them are in the same type of hurry that we are, but we're all in this together and we hold on together, and we move forward together. 

I am grateful for the amazing nurses and doctors and teams that work for patient advocacy and to make sure that we're all taken care of. "In God's time" has never rang truer for us. 

We're gearing up for our road trip, loading the "A Week Away" soundtrack, and packing all the snacks.

Thank you for doing this with us 
Go Team Sadie  

 June 1 - Waiting for Echo and Follow Up

Today Sadie, Rose, Harper, and Will are at the hospital waiting for the results of her Echo. We ask for prayers for Sadie and all the medical personnel.  

May 31 - Fireworks, love and magic

We are blessed. 

The hospital room from Orlando faced Disney but it was miles away and the fireworks looked like ants on the horizon. Every night Sadie would look out at them and say she really wished she could see them.

Tonight Will made that dream a reality and put on a show for her at my Dads (and for the family and half the neighborhood). She wanted to hang back a bit but Harper was up front and center.

Bright moments make this life beautiful.   

May 30 - Whatever it takes to win the battle

I get asked a lot "how are you doing?" and I usually have the same 'nod and smile' and say 'We're okay'. Keep it simple. I don't know how to say "I've become a general in this war against heart failure and waiting. My mornings are spent battling the kitchen and trying to present even the smallest crumb as appetizing, my days are spent trying to remind her to slow down while also creating engagement, while my evenings are spent inhaling caffeine in the hopes that one night she might actually go to sleep." I feel like a new parent all over again, sleep is lacking, food is in increments at random times, there's constant fussing and discomfort as she tries to learn her body and understand her feelings and the reactions- but this time I can't swaddle her (yes I've tried), and she's quite opinionated about, well, everything.

Sadie is on multiple heavy medications. I try to break up her morning and evening doses into a three hour span for her so they don't all sit on her stomach and cause her to just crash and feel like ick for hours (Been there, done that, burned the t-shirt), I've also been trying to let Sadie sleep as much as she can in the morning. She likes to wake up around 7:30-8, so I've scheduled her first medications at 8am. The first does is the only mercy she gives me. The next three hours are a delicate battle of me trying to sing goldfish into her mouth or dawn my armor and offer actual eggs and pancakes or try to sneak bites into her mouth while she's distracted and takes them out of routine. I have crafted many tactics in this particular battle. Now I can hear you asking (or saying to yourself but trust me I've thought them too) "Give her the meds without food" or "she'll eat eventually" or "give them to her later" and I can promise you- George Washington would not approve, those are not sound plans for this particular siege. Medications on an empty stomach are- messy, and Sadie without medication is- not ideal. And she has to take these medications multiple times a day- it's all in from the sun up to midnight. She's eight, she's fighting for her life, and she just doesn't feel good- if I have to airplane the jello to her lips to get her meds in her then pin me with my wings and clear the airspace.

Throughout the day is my favorite time with her, I come armed with a cup of coffee and on occasion have been able to consume it. Some days Sadie feels good and she wants to paint and craft and this almost always results with paint on the floor and our clothes and her feet and glitter in corners of rooms I didn't even know she went into. She'll craft like Da Vinci on a mission and then need to snuggle and rest for a bit. As soon as she's recharged she always asks if we can play a board game, and usually by mid afternoon she'll hit me with "Mom I'm hungry" and almost everyday I almost cry when I hear that line. Occasionally she'll eat a good meal, most of the time she just wants to devour a bag of goldfish and a drink and her mid day meds go down the easiest.

Every good solider knows the importance of a battle buddy. By early evening is when my battle buddy always shines. There's mystery goo in the play room, there's glitter in the dogs hair, there's uno reverse cards in the refrigerator, there's half eaten toast and barely sipped cups all over the house- and I'm exhausted. Will always comes to the fight with paper towels, clorox, hugs and snacks. Just when I find my half full cup of coffee he sits me down and takes the girls out for a wheelchair ride around the block, or sets up an indoor movie theatre for them with a projector and popcorn, or sets up mario kart for them so Sadie can snuggle me (one of her favorite comfort pass times) and I can just sit for a moment.

The evenings are long, we have to repeat the food battle with evening medication and half the time just pray that they stay down and she can get some sleep. Some nights Sadie becomes her best at night- asking to eat every ten minutes, wanting to watch movies and snuggle. I try to stay awake for these moments, I don't even care that it's late- any good moment for her is one that we celebrate.

This is just a one battle- and I'll fight it every single day for her- every sip, every bite matters- and I'll celebrate the victories. So if we've got to follow up with popsicles, paint faces to look like doggies, or put on minnie ears and take a walk in order to get some food down- then hot dog friends, lets go.  

 May 28 - A Day of Thanks

The last couple of months Sadie has pretty much been in the hospital 98% of the time. During that time both of her teachers and her assistant principal have called and texted and messaged and checked in with her- with love and support and encouragement. Her class sent her cards to the hospital room, her teachers sent notes and gifts to lift her spirits, they showed her nothing but gentle kindness and love. This is the last week of school before summer break and while Sadie hasn't been back physically in two months, her class has kept her there in spirit. I was able to coordinate with her homeroom teacher and Sadie got to visit her classroom one more time before the school year ends. She painted pictures for her teachers as her end of year gift and loved being able to see them. I can not thank our teachers and the school enough for all the support and love they send our way, they are absolutely #TeamSadie. We were able to watch big sister walk across the stage and receive an honor award. I am so incredibly grateful for good days. 

May 25 - The Start of it All

As we navigate the heart transplant evaluation and status it's more and more evident that this is going to be a long road for us- on average pediatric transplants happen every 6-9 months, sometimes longer. We've also been advised that a transplant is not a cure- it's a trade. We trade her heart failure for a life of immunosuppressents, medication regiment, and a new set of limitations- but it is life, and with a good support system she can do more than she can now and we're grateful for that opportunity.While we wait all we can do is pray and keep Sadie on medication. She can't go to school, she can't ride a bike, she can't walk stairs, and we will always have to be with her. She requires an AED as a back up to her ICD because of the severity of her condition. She's very fragile right now. We give her all of our love and spend every day grateful and thankful for another inch forward. Financials are in God's hands- we've been so blessed by this fund and our community- but our road is long and we are dependent on the generosity of others right now. Thank you for your support, thank you for allowing me to be able to walk with her through this without the burden of debt hanging over my head, thank you for letting me sleep beside her every night and hold her hand every day.

May 23

We recently discovered that Sadie is in severe heart failure. Thankfully we were able to catch it before she needed an emergency transplant, but we did find out that she has Carvajal Syndrome- which is a mutation of Naxos disease. It’s incredibly rare and difficult to manage. She’s got a long road of adjustment and healing and relearning life ahead of her.She’s currently being treated by a specialized heart unit in Orlando. They have implanted an ICD. She’ll be monitored for further heart failure and is beginning the transplant evaluation process at UF.Sadie is on a lot of expensive stabilizing medication, requires a wheelchair for any activity that last longer than an hour in order to participate, and we are currently in the process of applying for a service dog to help monitor her heart rate. She can’t ever be alone or without medical supervision because of the severity of the disease. 

May 8

Sadie is out of surgery. This girl is strong with some of the best protection from above. She’s the first ever of this type of small single lead pediatric implant in central Florida- it was emergency approved just for her. Unfortunately she’s got a virus so she’s already not feeling well and recovery for the procedure will take at least a week- but we are on the road to recovery and I am so incredibly thankful to have landed here."

April 13

I can’t thank you enough for all the thoughts and prayers sent our way. We are a week into life being very different for us, and I’m grateful for every minute that God has blessed us with. We are still in the hospital, Sadie has a road of improvement she has to reach, but we are hopeful for the day we get to return home. In the mean time we’ve got a bit of a financial burden forming and we could use all the help we can get. I love you all. Sadie loves you all. Please keep us in your hearts as we navigate this new walk of life.

April 12

It’s been five days and it feels like a blink of an eye and an eternity. I’m at a pediatric Intensive Cardiac Critical Care Unit in Orlando with Sadie. We will be here for a while. She had a passing out episode at school that lead us down the path of discovery- she’s in moderate heart failure. We are in good hands, she has an entire team of cardiologists and nurses working for her, but she’s in a rough way. I ask that you keep us in your thoughts and please pray. Prayer is keeping me grounded right now. We have an amazing community of family and friends surrounding us and helping us navigate this. It’s one day at a time. One of my best friends told me “all we need is an inch at a time in the right direction” and I’m holding onto that hard. One day, one prayer, one inch at a time.