Here's the last couple of days in pictures:
Bela's last full day in the hospital
This was the last big test she had done..testing her brain wave activity which all looked compleltey normal. Yeah! It's amazing what modern medicine can do..
Bela's visitors, her aunts and cousins.
Benson giving kisses. He's loves Bela. His favorite thing to do for her is give her her binkey..not too surprising.
This is Bela's all about me board. Everyday she'd get new goals she was working on, these are her current goals..:)
This was taken yesterday right before we got discarged.
Getting ready to go! She loved the carseat and was wide awake when we left, saying goodbye to all her nurse and dr friends and checking out the world.. She is so tiny in the carseat..
Benson was helping us push our stuff out.. he was so excited to be leaving and taking mommy and Bela home.
Outside the hospital.
Home, sweet home. Dosn't she look so happy to be home?
Driving away from the hospital yesterday was probably one of the best moments of my life so far, but was also very scary for me. I was soo excited to be coming home with my baby and getting her to a more comfortable place where we can work on getting her healthier and stronger. Getting the last of her IV's out and monitors off, and getting her into her little outfit was the greatest feeling. It was all I could do to not start taking everything off her the minute they said we'd start the discharge process. She has bruises all over her little body from different IV's and needles and I was sooo ready to get them all off her. It was sooo good to finally cuddle her with nothing attached. She seemed so warm and content to be wearing clothes and not just be naked. There are so many things I have wanted to do for her since she was born that I wasn't able to do for her until now, and it has been a wondeful night and day for me. One of the sweetest of my life. It's hard to put her down. And she is loving life too...she's so much more content and loves to be held. She has been nursing better than ever cuz we get to curl up in a warm bed together, instead of a loud, cold hospital room. She has been through soo much, and it has been so nice to give her a little break from it all.
All we had to come home with was a pulseox monitor. We have it on all night long and periodically throughout the day to make sure her oxygen saturations and her pulse are staying where they should be. As soon as we begin to notice her numbers trending down, that will be the sign that she is ready for her next surgery. We were also given lots of training on the signs to look for in her if there is a problem. We were told countless times yesterday (as if we didn't already know) how fragile our little girls condition is. Her heart is no where near being fixed, it is simply being kept functional until her next surgery. THere are a lot of little problems that could arise with it over the next few months and monitoring her is crucial for her survival. Also keeping her healthy is crucial for her survival. For that reason we are going to be very protective of her and cautious of who we let see and hold her. We would love for people to come see her, but just ask that you delay coming if you have any symptoms at all. Thanks for understanding..
We are sooo grateful to everyone who is praying for Bela because it is still working miracles for her. She has been lingering aroun 6 lbs 6 ox for awhile and needs to start gaining now. Her heart works so hard that she is burning calories so much faster than a normal newborn, so it's going to be more difficult to get her growing, but that is our goal. Drs. were amazed that she is solely breastfeeding. SHe didn't even have to come home with a NG tube which is pretty amazing for her condition. That's what prayer, divine help, and A LOT of determination can do I guess. I'm so grateful for her strength, she is so strong for such a little thing, and we are being incredibly blessed.
We are sooo excited to be home. Last night sleeping in my own bed was soo great(despite waking up every hour or so). Benson was soo excited to wake up and see her home today. He was all giggles today. It's a great day..