September 17: Day +77

Bella is storing acorns for the cold winter in her cheeks!

Heaveno!

Sleepy in Minnesota...

Bella had an okay day. They are having trouble managing her blood pressure (shock). When she is awake and alert, her heart rate goes up to the 180's and her blood pressure is okay... not even high. When she sleeps, her heart rate drops down as low as 100's-120's but her blood pressure drops as well. The problem with having an A-line is that if her blood pressure dips, you see it in real time, and if it alarms for 5 minutes constantly, people think it's a big deal, when if they would just leave her alone, often her blood pressure holds steady... low, but steady... while she sleeps.

Anyhow, We tried to take it easy on her today to let her rest. She still gets futzed with all day and evening by the multiple doctors and nurses she has throughout the day, but it'll be quiet overnight at least.

Those white dots are called milia. It is basically scar tissue that may fall off at some point...

The plan is simple for the weekend: let her rest and heal. Tomorrow, daddy gets to watch his favorite English football team, Arsenal, play on TV while he does bandages, and mommy and Ali will go clothes shopping for more fall gear. We won't be getting out of Minnesota anytime soon, so we need to be ready! We have thin blood being from southern California (maybe THAT'S why Bella's pressure is so low... thin blood? LOL), and it has already been colder here than the coldest day of the winter in Cali. I am looking forward to Ali getting to experience the change of color in the trees, and the chance to play in the snow and go sledding! That will be cool. Sledding and snow forts were a part of my growing up, so I am grateful she will get a chance to experience such things while we are here.

I still can't believe we fit a giant tube in there...

On a separate note, I have to share about a blog one of our readers shared with us tonight. It REALLY put things in perspective for me in terms of despite the circumstances, how blessed we truly are through this entire process. We have access to the very best BMT docs in the country, and the very best dressings and products for Bella's care, all of which is covered by Angelique's insurance policy. We stay in a beautiful, gigantic family facility with a media room where we watch movies in giant oversized couches and chairs while eating fresh popcorn... we have it GOOOOOOOOD.

Please take a minute to visit this blog and read the story and see why I - we - all of us have so much to be grateful for. CLICK HERE. Please take the one minute it will take you to read it. It is very powerful. Thank you to The Italian Dyes for sharing this with us!

One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

God night.