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Transplant 2- Honoring her donor, and her Aunt Ju

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Early in the morning on October 23rd, Tanner got a phone call that his sister, Julie, just a year and half older than him, had passed away. My sweet mother in law had to receive this devastating news from Bela's hospital room. Although Bela was unaware of all of it, at the same time they were helping my mother in law just outside her room in the hall, Bela's heart rate shot up to 180 and her rhythm went crazy for about 3 hours until they finally got it under control. We still don't really know why, most likely her heart telling us it was nearing its end. In the late hours of that very same day we got the call we had waited for for 11 months. A match had been found for Bela. Tanner had already decided he wanted to sleep there with Bela that night.  As hard as this hospital stay was becoming, there was a tangible peace being there with her in that room.  When he was woken up with the news that night, he stood in the hallway outside her room and wept as the flood of emotions o...
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First transplant post

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This space used to be very healing for me. I wish I never would've stopped documenting here...I love knowing the first 5 or so years of Bela's life were well documented. But as I sit here with the familiar view of her hospital bed and sounds of beeping monitors, it feels almost necessary for me to write here again. Bela has had 12 incredible years of living life since my last post on here.  We were getting really comfortable with our cardiology appointments every 4-6 months, endocrinology every 3-4,  bloodwork every couple months, and occasional MRIs, procedures, or trips to the cath lab. Life has been full and so good. She's traveled a ton, ate a lot of good food, hung with friends, participated in theater, and found so much joy in her simple but rich life. We also had two more kids in that time.. more chaos and more love.  I don't know if anyone will still look for and find this blog looking for hope for HLHS, but I hope so.  We've now been inpatient listed for he...
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3 weeks out and doing great!

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Bela has been doing pretty darn good. I'm amazed by her.. as usual. She dosn't want to be held back any longer! She begs me to go to the park, got to the store, get back to anything normal. We're taking it slow, but she's been out to the park a couple times when it's been not too busy and she's so happy to be sitting in the sand with her shovel in hand. Sometimes it's like she didn't skip a beat. She has times still though where she seems tired, or grumpy, or like something bothers her but she just can't quite tell what it is. But overall, oh my gosh! 3 weeks post-op and she's a rockstar! I'm just so darn proud of her, for doing something so hard and for coming out of it so well. She tells everyone that she just got her heart fixed and sometimes even shows them. I'm never quite sure how to react when she pulls her shirt right up. It's like she's actually almost proud of it, as she should be, but I cannot understand how...
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Home

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It's been wonderful to be home.. It's just crazy to me that we are done with the Fontan. I can't say how amazing it feels to say that. It's hard to describe what it's like to wonder and worry and speculate and dread a surgery for 4 years. I had no idea what to expect since she was so little with her previous surgeries. And I can't believe 8 days later we were home. Done. It's DONE! Feels soooooo good. The last few days have been a little rough for Bela. She is restless and uncomfortable most of the time. It's just going to take time. It's hard to be patient for her to come back to me because she was just too good before... I have to remind myself that it's only been 10 days. I just miss her. She wants to be held and dosn't want to walk too much. She isn't sleeping too great either. She threw up a couple times yesterday but didn't throw up today at all. I think she just needs to get all the drugs out of her system. She ...
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Fontan 9

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What a difference a day makes.. especially around here. She got her IV fluid turned off because we are feeding her through her Gtube now and she is keeping it all down. That was the last line that was connected so we were able to get rid of her IV pole and lines and pumps. This just makes it SO much easier for her to be mobile. Huge! This morning about 10:00 the neuro doctor came in to tell us that her EEG looked perfect. Absolutely no sign of a stroke and no seizures. Yes yes yes yes yes! and a wahoo too! Can I even express the relief? She is still not using her left arm or hand, but he tested her arm for reflexes and hers were great. He believes it is nerve damage and she just has to regain full function through therapy. We've done that before, we can do that again. I know she'll be just fine, digging in the sand in no time. She got her 'hat' off and all 50 probes that were on her head and we were able to go for another walk. She walked twice as far today....
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My dearest Bela-- I was amazed by you when you were a baby. I've been amazing by you your entire life. But right now I've never been more amazed. I keep reading these words from the talk The Atonement Covers All Pain, " I have noted that children are often more naturally accepting of pain and suffering. They quietly endure with humility and meekness. I have felt a beautiful, sweet spirit surrounding these little ones." This describes you so well. How many times I have wished that I could take this all from you. I try to stay strong when your eyes are looking into mine. When you fall asleep, I cry for the pain you are enduring, and the fear I see in your eyes. Even if someone comes in just to say hi, you do not take your eyes off them, with a nervous look wondering what they will do to you. You are comforted by me laying by you and when you feel my hand in yours. I am grateful I can help you through this in that tiny way.. I watch you endure this with such ...
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Fontan 8

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An update... It's been hard to find a minute. To catch up from the last post... She had a good night that night after she got her PICC line in and was able to drink. She rested and drank all night...20 ounces of gatorade in one shift! She didn't wake up for the day yesterday until noon. She was sweet and quiet for awhile. She had a few bites of a pancake and some fruit loops...still didn't have a big appetite, but it was nice to see her eat anything at all for the first time. We got the update that we were going to be able to pull her left chest tube! I was SO excited for her. Before getting her tube pulled. Adult patients say that is the most painful part of all. She had only been taken off sedation for a few hours and finally perked up a little bit, so I was a little disappointed they had to give her something again to pull the tube that would take her away again. They suggested a med that would give her an amnesia like response and I felt wrong about it but af...
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