Bleeding heart no more

Bleeding heart no more!

Written Nov 8, 2011 8:20pm by Amber Gannon Medina

I got to kiss my daughter's forehead tonight! She's three weeks old, and its the first time I was able to kiss her goodnight. Mirabelle was whisked away five minutes after she was delivered (I was able to hold her long enough to see how mad while I was studying her little face). The next time I saw her she was hooked up to a billion cords and lines, including the little transponder on her forehead. Hence, the no access to her forehead business for the next three weeks.

This lovable forehead smooching tonight was the icing on the cake after John and I were able to hold Mira last night before she went into surgery. After the nurses lifted her up to put a warmer beneath her, they motioned for us to come over and put our hands under her. John and I went over and verrrry cautiously slid our hands under her body and we were holding our daughter! Who ever imagined I would be holding my daughter, feeling her lungs moving in and out in time to her ventilator and watching her open chest beat with her heart? Definitely the last thing I ever thought I would be doing. But I felt truly blessed and it felt very sacred to be standing there with my favorite person, holding the little person we had helped create.

Mirabelle and surgery. Last night marked her 5th surgery. It seems that to celebrate her 3 week birthday, she decided to scare her surgeon and show him how much blood she could lose through her chest tubes. Apparently she impressed him so much (losing about a liter a day) he called an emergency team together to do a chest exploration. It seems that is how Mira prefers to do things-as a last minute surprise! 

After Mira went into surgery, we went home to wait for news (we were told she would be sedated most of the night, so we decided to head home to sleep!). For some reason, the whole thing felt like a huge step backwards and I turned really dark and melancholy. In the days leading up to the exploration, I had been feeling so itchy for Mira to get better and in the meantime I was feeling gypped that I was still missing out on all the milestones. No diaper changing, no feedings, no rocking her to sleep, no cute outfits or swaddling...I felt sad that her belly button wouldn't come off because it was full of stitches and I wouldn't be able to cut her fingernails because she is on heavy doses of heparin.

So maybe I was feeling sorry for myself a little. Maybe getting lost in the details. Then BAM-another wake up call that Mira is not home free, that she is still fighting for her life and is very sick. I don't know whats worse-feeling frustrated that I can't do every day normal things with her, or being scared out of my wits that she isn't going to make it through all of this. I think the hardest part is the ping ponging back and forth between the two.

I shouldn't have been worried. That little fighter made it through her exploration just fine. They discovered the reason why she had been bleeding so much was that after her last exploration on Friday a piece of her heart had fused to her sternum. That meant that every time she had hiccups or coughed she was in pain, and she "scratched" her heart enough to make it bleed.

My Mira had a bleeding heart....

Of course, John reminded me to keep this all in perspective. I swear, that guy is a buddha on a mountaintop. He said, all we can do is be in Mira's corner, be her wingman (and lady). He reminded me (again and again) that tomorrow is not promised to anyone, and Mira is a reminder that we need to cherish each moment we have with every loved one in our lives. 

Mira was doing well today. Her bleeding was a ton better-about 100 cc's less (daily) then it had been-and that is a big improvement for such a little person! She seems a lot less uncomfortable and slept really well all day except for a few happy waking bits. I've decided to be one of those pollyanna optimists and think this is the last bit of help she needed to turn that corner and get better. As I discovered during the relatively short time I thought she was getting better, each step of the way will have its own difficulties. When her condition is dramatic and unstable, I am gripped by fear and operate in survival mode. When she is more stable, but still bedridden, I feel frustrated I can't do more for her. None of this is easy. 

But I constantly remind myself she is HERE! She smiles at me, she looks at me with earnest and intent beautiful blue eyes, and every day with her is so cherished and filled with gratitude. Mira is forcing me to be the best person I know how.