Bela Girl

I was 22 years old and 16 weeks pregnant with our second baby when we heard devastating news about Bela's anatomy.. she would not be compatible with life. They were sure enough about this that even though my Dr. knew how we would feel about it, he assured me it was okay to consider aborting the pregnancy because in the next few weeks I would spontaneously miscarry her. She had Turner’s syndrome and 99% do not survive in utero to birth. On top of that we were told she had Hypoplastic Left Heart Syndrome, a single ventricle heart, so the two together were not going to be survivable.  So everyday I did the terrible task of doing ‘kick counts’. Everyday I waited to stop feeling her move. Everyday I waited to make the call that it was time to come in and deliver my stillborn baby. But she was still kicking strong at 30 weeks, and so I started going in for twice weekly appointments to monitor her heart rate and movements. Everyone was surprised. It was hard to even know what emotions to ...

  Yesterday morning we went in to get some labs drawn, something she has done hundreds of times in her life, and recently about every week since transplant.  Yesterday's draw was different.  Bela always remembers which arm she used last so she always switches off arms. She pulled out her left arm, which isn't usually her easier arm, because she had just had an IV in her right arm to get some fluids on Thursday.  They tried a couple times but couldn't get her vein. I know it was hurting her because for the first time in a long time, she started to cry.  She tried so hard not to, but she couldn't stop the tears.  The technician apologized and gave her a minute before trying her right arm.  She got it right in that time but Bela just kept crying.  And I mean crying.  I had not seen that in years.  She just kept saying to her, "you've got this, almost done", as if she hadn't been getting labs weekly with no problem for months.  I knew t...

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...

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...

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...

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 ...