Surgery

I've sat down and tried to write this update about 10 times now and it's just not coming out the way I want it to, so I'm just spewing it out and hitting publish and being done with it.

We've scheduled Helena's corrective open heart surgery. She will go in for a pre-op check on April 7th, and then on Monday, April 11th she will go in for her Rastelli procedure (do your own damn Googling).

We're in a great place right now where she's getting about 90% of the calories she needs orally, and we're still making up the difference using her NG tube and feeding pump at night. We're still giving her a ton of food at night because eve with her weight gain (2 lbs in a month!) she's still underweight, and now with surgery scheduled we want her to be as fat as possible before then.

She's healthy, she's happy... You'd never know there was anything wrong with her if you saw her. She's smiley and has started rolling and is kinda sitting up on her own a bit. She's doing great. That's part of the reason we scheduled the surgery - she's healthy and strong right now, and she's a good size so let's get it over with.

Sitter.

Eater.

As terrified as I am, her medical team is excited. They all think she's going to do great and come out of surgery even better than she is now. I take comfort in their confidence but I'm still an emotional wreck just thinking about it.

As my husband said, this time around will be both much harder and much easier.

It will be easier because we know her. She's tough. She's feisty. She's a fighter. She's handled every challenge beautifully and done better than anyone had hoped she would. Most babies need their corrective surgery well before six months. Helena will be almost 8 months old when she has hers, and even then she doesn't need it at that time as much as we're choosing to do it at that time. Her oxygen levels are still great (granted she hasn't been growing so she hasn't outgrown her shunt, but still). She's battled a couple colds like a champ. She's a tough cookie.

It will be harder because we know her. When she went in for her shunt surgery she was in the crib in the NICU and we had hardly held her, and she was only two weeks old. Of course we loved her and of course we were scared and worried but now that she's 7 months old, we KNOW her. We know her personality. She's not just a tiny little newborn blob, she's Helena. Handing over Helena for open heart surgery is almost unbearable, and yet it has to be done. She needs to be fixed.

So until April 11th we're just doing business as usual. We've planned My Little Guy's 4th birthday party (the surgery team was wonderful enough to accommodate us in waiting until after his birthday to do Helena's surgery so that he can have a normal birthday), we're attempting to get as many calories in Helena every day we can, and we're working with our therapy team to get her as strong and close to her age development-wise as possible, knowing that she will probably have some regression post-op. She will also have movement restrictions on her until her sternum heals again, so we're doing as much as we can now knowing we're looking at a few miserable weeks of healing down the line where she won't be allowed to move around the way she has been.

It's scary, but at the same time I'm glad that it's scheduled and that it'll be done and we can maybe have a semi-normal summer. As much as I'd love to put off surgery forever, getting it over with is good too.

We thank you all again for all the love and support and your kind words, thoughts and prayers. We're so lucky to have such amazing and understanding friends and family and we truly appreciate it all.