Kymora’s Journey with Pulmonary hypertension

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Operating as usual

Saw a beautiful sunset while chatting with my beautiful warrior. 💜
11/20/2020

Saw a beautiful sunset while chatting with my beautiful warrior. 💜

11/20/2020

💜💜

I’m slowly but surely making it through all the cards and letters.. it’s much harder than one would imagine.. I want to ...
11/13/2020

I’m slowly but surely making it through all the cards and letters.. it’s much harder than one would imagine..
I want to say thank you to all of our supporters. The kind words bring comfort, the little gifts that are filled with love in honor of her; mean more than most will ever understand. I’m truly thankful for all of you and all the thoughtfulness; it’s more appreciated than I can explain. 💜
I included a few pictures of the thoughtful gifts we have received, and pictures of my beautiful girls.
God bless you all.

10/13/2020

💜😢💔

Going through old posts and pictures. Trying to put all the pieces together, desperately seeking some answers to all the...
10/02/2020

Going through old posts and pictures. Trying to put all the pieces together, desperately seeking some answers to all the what if’s? And why’s?.. coming up as empty as my heart feels right now. Wanted to share this post from a year ago.. I miss her so damn much. 💔😭

For almost the last two years; starting with my stay in the mommy & baby ward, when she was born into the NICU, and when...
10/02/2020

For almost the last two years; starting with my stay in the mommy & baby ward, when she was born into the NICU, and when she transferred to St. Louis in the CICU. My morning’s have started with rounds, wether I attended in person or I listened on the phone on the days I was away. Rounds and Kymoras goals for the day, were how I started every morning. It was the biggest focus of every day. I was sure when that chapter closed we would start our mornings with kisses, cuddles, cartoons and pancakes... 💔
I don’t even have the words to express the pain and emotions I feel now. 😔

Kymora Luelle Horne-Von Thun 11/26/2018-09/25/2020.Rest In Peace my beautiful warrior princess.. 💔😭
09/29/2020

Kymora Luelle Horne-Von Thun
11/26/2018-09/25/2020.
Rest In Peace my beautiful warrior princess.. 💔😭

Kymoras CT results. Showed her right lung is slowly making some improvements. 🙌🏼💜👏🏼Doc said we are still nowhere near no...
09/21/2020

Kymoras CT results. Showed her right lung is slowly making some improvements. 🙌🏼💜👏🏼
Doc said we are still nowhere near normal but it’s a little better than before. One thing the NICU taught me is even the tiniest of steps are worth celebrating! Might not be much to the docs but it’s progress and Momma will take progress of any amount. 🙌🏼 We turned up her vent settings and flipped her on her belly hoping the right lung will continue to open up.
But of course Kymora is throwing us another curve ball. She has been tachycardic (high heart rate) since last night. None of her boluses (PRN medications) seem to be helping. Her heart rate is staying in the 130’s range; and nobody knows why. 🤯🤯 we are going to continue to monitor it. Waiting for some more lab results to see if it’s caused by an infection. For now we will let her sleep on her belly, rest and recover. Praying her heart rate decides to slow down on its own without requiring any further interventions. Thank you for all your prayers. Keep em coming guys. Prayers for more progress tomorrow.
#PrayersForKymora

Kymora is off to have another chest CT. Prayers it brings us some answers, that lead to solutions that produce results, ...
09/21/2020

Kymora is off to have another chest CT. Prayers it brings us some answers, that lead to solutions that produce results, followed with progress leading her down a road to recovery ending at home with her family, where she belongs. 💜
#PrayersForKymora

09/21/2020
This video was taken 2 weeks before her surgery.

It’s been 21 days since Kymora’s Lung Transplant surgery.. 21 of the longest most agonizing days of my life. It wasn’t supposed to be like this.. and momma is going crazy. I miss her smile, I miss the way her eyes light up when I walk into the room. I miss how excited she gets when she hears my voice..
When I can’t sleep.. which is most nights I lay in bed watching old videos and going through old photos. Trying to stay positive. Reminding myself of all she’s overcome, to reassure my fears that she will overcome this too. My daughter is going to overcome these hurdles in front of her. Her right lung is going to open up and starting cooperating. One day soon she will be under the same roof as us, where I will be able to lay down next to her and snuggle. My kisses goodbye will turn into kisses goodnight. My good mornings won’t require a drive to the hospital. I will kiss her and hug her and squeeze her and hold her WHENEVER I want. One day soon. 💜 #PrayersForKymora #SpeakingItIntoExistence

Yesterday Kymora had another bronchoscopy. They  got a lot of secretions and a few mucus plugs out of her lungs. They se...
09/19/2020

Yesterday Kymora had another bronchoscopy. They got a lot of secretions and a few mucus plugs out of her lungs. They sent some of it off to the lab to check for infection. At 6:30 this morning they put her back on the oscillator vent; a suggestion I had Monday after the cardiac cath but it got shut down. 🤔🙄 They also increased her methadone dose. Hoping this increase will decrease the amount of PRNS they give her.. my poor baby I swear. Getting her off all these meds is going to be a mountain in itself. We are hoping a few days on the oscillator vent will be enough to open that right lung up. It’s literally our last ditch effort. If this idea fails she will likely have to go back to the OR. Which is the thing we have been trying to avoid at all costs because they had sooo many problems keeping her bleeding under control with the transplant. They really don’t want to take her back to the OR again. Kymora has a lot of fluid and air on the outside of her right lung. That pressure is not allowing her right lung to fully expand and work as it is supposed to. Prayers the oscillator helps clear some of that extra fluid and air out. We have tried literally everything else. I reallyReal don’t want to send my baby back to the OR. Not that anybody ever does, but it adds extra concern and anxiety when the surgeons are even resistant to it themselves.. I know y’all haven’t stopped praying for my warrior, and I thank you all for that! She needs and deserves every last prayer she can get! So let’s all continue to send big bold prayers for my princess warrior through the weekend that the oscillator does what we want it to. Prayers that by Monday the right lung is fully open.
🙏🏼💜💜🙏🏼🙏🏼

Today Kymora is having a chest CT, hoping to get some answers about the right lung.  Momma has been very resistant to th...
09/17/2020

Today Kymora is having a chest CT, hoping to get some answers about the right lung. Momma has been very resistant to this idea as the doctors have discussed it over the last several days. With her kidneys already requiring the help of the CRRT machine. I didn’t want to put them through the contrast part of the CT scan. Prior to her lung transplant surgery, Kymora has never had kidney issues. Post transplant they haven’t been functioning as well, I was worried that if we put the kidneys through more they would become more damaged, making it hard for them to recover. The doctors have exhausted all other tests, and still we don’t know why the right lung looks so sick. so today they presented a CT scan without the contrast and momma gave the okay.. prayers it gets us the answers we need about the right lung. Kymora really needs to get on the road to recovery.
💜🙏🏼💜 #PrayersForKymora

Kymora continues to throw her curve balls at the doctors. 🤯 So far this week she’s had a bronchoscopy, an echo and went ...
09/17/2020

Kymora continues to throw her curve balls at the doctors. 🤯 So far this week she’s had a bronchoscopy, an echo and went for a cardiac cath. All to determine why our right lung looks so sick. Bronchoscopy showed no concerns. Mild secretions but nothing significant. Her Echo showed no concerns. Her cardiac cath showed no narrowing of her pulmonary veins. She had some
Minor blood clots and one slightly narrow pulmonary artery. They took care of the blood clots and put a stent in the pulmonary artery. But neither were significant enough to cause the concerns we are having with the right lung. So again.. nobody knows why.. we tried weening her off ECMO and her CRRT machine. She showed us she wasn’t ready to come off either. We tried this on the same day of her cardiac cath so I’m hoping it was just too much for one day and with a couple more days of rest she will be ready to conquer our next goals. Today we had to replace her Morphine with Dilaudid, to help keep her more comfortable and sedated. Getting her off all these meds is going to be a mountain to climb itself.. 🤯💪🏼 We have introduced a couple respiratory plans to help with the right lung, praying hard they do the trick. Nothing thus far has worked. Big bold prayers for my princess warrior. Thank you all for the continued prayers and support. God Bless you all. 💜🙏🏼❤️

Happy NICU Nurses appreciation week! The gratitude, LOVE and respect I have for these heroes is overwhelming. They liter...
09/16/2020

Happy NICU Nurses appreciation week! The gratitude, LOVE and respect I have for these heroes is overwhelming. They literally were my village during our NICU journey. I will never forget any of you. I can’t wait to walk in that NICU with Kymora to show you all what your love and hard work helped her become! The NICU is a terrifying place but I was fortunate enough to have an amazing village by our side. Every step of the way. The staff at the University of Iowa hospitals in the NICU is amazing. I am forever grateful for every single one of you.
Was gonna upload just a few old photos of Kymora’s NICU journey.. might of went a lil crazy.. oops. 🤷🏼‍♀️😂😂 I just love em all. It’s hard to pick. 💜💪🏼

Today was a better day.💜🙌🏼 We switched her from the oscillator vent to a conventional vent. We are going to try a high p...
09/12/2020

Today was a better day.💜🙌🏼
We switched her from the oscillator vent to a conventional vent. We are going to try a high peep with low tidal volumes method and see how her lungs respond. 🤞🏼🤞🏼
Just as I predicted her lungs came back from the OR in worse shape and retaining more fluid. Her right lung is larger and appears sicker than the left. The cause could be 5 different reasons. All with various concerns. Hoping it is least conceding and it’s only that the right lung retained more fluid during surgery and with a couple days rest it will come off and they will get healthier and stronger on their own. Big prayers that is all that is going on with them. 🙏🏼🙏🏼 if they aren’t looking better by Monday we have a plan in place. But so far she has continued to fight and is doing well.
We did a gas on her about 30-40 mins after we switched vents and it was beautiful. 🙌🏼🙌🏼 I’m so proud of her. Prayers she continues to breathe beautifully with the conventional vent and we make no steps back in this area. 🙏🏼🙏🏼
She looks sooo much better with her chest closed. The ECMO cannulas in her neck are going to take some getting used to tho.. We have several hurdles ahead of us but she crossed a big one today coming off the oscillator. 💪🏼🙏🏼💪🏼
X-ray comparison of her lungs below. The picture on the right was before surgery and the one on the left is after. Also you can see the placement of the new ECMO cannulas.
#PrayersForKymora

Kymora is back in her room resting comfortably. Our prayers worked, because baby girls chest is fully closed. 🙌🏼🙏🏼🙌🏼 als...
09/11/2020

Kymora is back in her room resting comfortably. Our prayers worked, because baby girls chest is fully closed. 🙌🏼🙏🏼🙌🏼 also we went from 6 chest tubes down to 4 chest tubes! My lil warrior princess is making progress! 💜🙌🏼🤞🏼 prayers we continue to head in this direction. Hope everyone has a blessed weekend and thank you all for the words of encouragement and the endless prayers.

Some old photos for #FlashbackFriday #PrayersForKymora

Surgery is about to begin.. as many times as I have sent Kymora off to the OR, you would think it would be a little easi...
09/11/2020

Surgery is about to begin.. as many times as I have sent Kymora off to the OR, you would think it would be a little easier by now. It’s NOT, not at all. Not even a LITTLE. Momma is a nervous anxious wreck as usual.. 😬🤯😨
Thankful she has soo many prayer warriors rooting for her. Would like everyone who is able to stop reading this and say a prayer for a successful surgery with no complications. For steps toward the road to recovery for Kymora. For healing and comfort for her. Prayers the surgeons have a clear mind focused only on Kymora, prayers for steady willful hands that will properly put my baby back together again with no complications. Prayers she able to stay sedated the whole surgery. 💜🙏🏼 Amen
I never mentioned this before but one of the issues during her transplant surgery was she kept waking up! 😳😳 if y’all could of seen my face or heard the craziness going on in my head as I stood their speechless listening to the surgeon telling me how my lil baby girl kept waking up while they were taking out her damn lungs!! 🤯🤯 and the fact that he was so shocked by it himself was mind blowing. It was an unforgettable conversation. Same surgeon who referred to her as a “raging house fire” lbs. the stories I will tell this child when she gets older.. 🤯 my baby girl truly is a warrior. 💜
#GodSpeed #PrayersForKymora
Pictures are from one year ago today. 💜

Kymora is going to the OR this morning! 🙌🏼 prayers for a successful trip. The surgeons have made the decision to only do...
09/11/2020

Kymora is going to the OR this morning! 🙌🏼 prayers for a successful trip. The surgeons have made the decision to only do a partial chest closure. 🤬 also still moving the ECMO cannuals to her neck. Kymora’s chest has been open so long they are worried the lungs have gotten used to it and will need time to adjust to the new pressure of her chest being fully closed. They don’t want to rock the boat too much.. baby steps. I’m not thrilled about this decision but I’m putting my trust in the surgeons and my faith in god that this is the right choice for Kymora. Prayers for a successful surgery and steps on the road to recovery. 🙏🏼💜

Hopefully tomorrow Kymora will actually make it to the OR... 🙏🏼🤞🏼🙏🏼 Thank you for the continued prayers. I’m so frustrat...
09/11/2020

Hopefully tomorrow Kymora will actually make it to the OR... 🙏🏼🤞🏼🙏🏼
Thank you for the continued prayers. I’m so frustrated I don’t even have the words. I’m not sure if my heart can handle one more day of her looking the way she does.. 💔💔
The reason for our delayed trip is because the surgery scheduled before Kymora’s ran over and they already had another transplant scheduled for 6-7 so they didn’t have any OR time for her.. again. 😑🤬😱😭
I don’t have the energy to explain all the complications she’s currently fighting.. 🤯🤯
I was not prepared for any of it. None of what she is going through or any of the things we are implementing was ever mentioned in our handout book.. it’s quite terrifying. I’ve tried reaching out to other fb groups to talk with parents who had similar issues and I’ve met no one.. as if I didn’t already feel isolated. I am trying my damndest to stay positive but ohhh god lord is it hard when she looks the way she does, and her room is closing in on us with all the machines; things I literally didn’t even know existed until they told me she needed it. The technology is amazing and I’m sooo thankful but it’s overwhelming.. meanwhile my poor daughter is just stuck in limbo.. We need the biggest prayers tonight that Kymora is able to make it to the OR tomorrow and they can successfully close her chest! 🙏🏼🤞🏼🙏🏼 my baby has such a long road ahead of her; it’s insane. It wasn’t supposed to be like this..😔
I included some X-rays of Kymoras lungs. It also shows where the cannulas for the ECMO device are inserted in her heart.

09/10/2020

Kymoras trip to the OR was postponed til tomorrow.. again. Continued prayers. 🙏🏼

Due to circumstances out of our control Kymora did not make it to the OR yesterday. So the plan is to go today and hopef...
09/09/2020

Due to circumstances out of our control Kymora did not make it to the OR yesterday. So the plan is to go today and hopefully close her chest, also moving her ECMO cannulas to her neck. Yesterday we started her on a CRT machine to help do the work of her kidneys. Yesterday her chest X-ray of her new lungs looked much better. So it appears the oscillator vent we started her on a couple days ago is working.
Her room already felt so small.. now it’s being taken over by bigger machines, and now more than ever before.. big bold prayers for my warrior. We need to clear these hurdles so she can get on the road to recovery. She has momma a worried anxious mess.. and seeing her in this condition is absolutely heart shattering. Trying to stay positive but it’s getting hard.. the walls are literally closing in around us. The days are soo long and are bringing very little progress. My warrior deserves a break.
#PrayersForKymora

Kymora remains critical. She’s still on ECMO and her chest remains open.. we are running into different complications bu...
09/08/2020

Kymora remains critical. She’s still on ECMO and her chest remains open.. we are running into different complications but she continues to fight.
Over the last few days we have focused on her hitting her urine output goals, so she can get some of the fluid off of her new lungs. We have made Medication adjustments for her blood pressure. As well as adjusting her meds to help keep her comfortably sedated. We have also been making different adjustments to her vent, trying to follow the cues she’s showing us. It’s really all pretty stressful.. She had another trip back to OR where they did another bronchoscopy. They also did a lung biopsy, to check if she is rejecting the new lungs. 

Tomorrow afternoon she will go to the OR again.. The surgeons are going to be moving the cannulas for the ECMO device. They currently go right to her heart through her little open chest, but they plan to place her cannulas for the ECMO device into her neck and then hopefully close her chest. Big bold prayers for my baby girl as she continues to run into hurdle after hurdle post surgery. We need smooth sailing so she can get on the road to recovery. 💜🙏🏼💜

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Comments

Just wanted to let you know I and I'm sure many others have been thinking of you. Keeping Kymora's memories close to our hearts ♡
Saying our farewell to our Warrior Princess.....was so hard. The eulogy was especially beautiful. Oh your big brown eyes and beautiful curls will be so missed. Your smile, the sparkle in your eyes. I was amazed at the number of photos posted for not even being on earth for two years....but then each day was a milestone. Thank you from around the world that joined in prayer and followed Kymora's journey. She will be sooo missed.....and by so many. Rest easy little angel for I know you are pain free, smiling, babblings on on and on and best of all breathing with no struggles at all. God has you at his internal home but we have you tucked in our hearts...forever. Thank you for the prayers and please pray for her mama during the hard days to come.
For you and Kymora 🤗🤗🤗
For you and Kymora 🤗🤗🤗
Hope our girl is doing a little better each day...praying without ceasing
Hello
Cmon punkin you, Gramma, your big sis, Mom, and God, you got this!
Been thinking about Kymora a lot lately. I sure hope things are looking up for that beautiful little princess. I've been praying for her and you too Momma!
How is Kymora? Is each day a little better?
Prayers for my lil cousin 💙❤️💚
A prayer for you and a prayer for Kymora ❤
Been thinking about little Kymora. Hope she is doing well. Praying for you guys