A long, but sweet day...

Home again, ahhh sweet home again. It was quite a long day, longer than expected, but a good day all in all. When we got there this morning, we found out that they hadn't done the cross and type for Bailey's blood from the sample they took on Monday. Sooo, they had to take a sample to do that and send it to the lab...before they could do the transfusion. This is to check the blood type and compatibility of her blood with the donor blood she'd be receiving for the transfusion. Even though they already know her blood type, this is done every time 1-3 days before a transfusion to ensure accuracy and that people always get the right blood type during transfusions. So it was an error that it wasn't done before we got there with the other sample, so they had to do that today before her transfusion could start. So we got there at 10am, but didn't start the transfusion until a little after 2pm. And since the transfusion takes about 4 hours, we didn't leave until around 6:30pm tonight. Could have been frustrated, but hey, I'd say we are just learning to be flexible with the things that happen! And Bailey didn't seem to mind. The nurses were wonderful, and we felt so bad since technically the outpatient transfusion part of the clinic closes at 5pm and they stayed for us. So we walked out with the staff tonight. Bailey did great, cried a little but no tears when they did her IV. They have a staff of people there (called Child Life) to make things easier during a child's stay, so there was someone blowing bubbles for her while she got her needle and clowns came while we were in the waiting room. What a little trooper she is, and we are so thankful for the staff of nurses that are so caring and gentle with our little one. We had a little room to hang out in all day with a little mat for Bailey to play on as she received her transfusion. They even brought in toys for her to play with. We even had a very welcomed visit from "Aunt Kate" who was simply glowing with her baby belly! Thank you for your visit! She even brought this tired momma a slurpee---thank you! Grandma Helen was with us the whole day. Since Thursdays are normally the day she watches Bailey, we weren't going to let her off the hook that easy, and of course she wouldn't turn down any opportunity to spend the day with baby Bails! It was great having her there to help out and spend the day with us. Ben was able to bring his laptop and working remotely, so he could still get things done for work. We are both blessed to have jobs that are giving us flexibility with everything going on.

Dr. Strouse came by to check on us. He said that they expect Bailey's hemaglobin will be on the low end of normal, about an 11, when she left tonight. So we joke that she will be crawling tomorrow, with this new boost of red blood cells (i.e. more oxygen)!! He gave us some more information about a study at NIH on Bone Marrow Failure Syndromes that we qualify for that will do most of Bailey's genetic testing (for free!---since it is to further their research...we just have to commit our time). We'll get to meet with an expert named Dr. Alter so she can answer tons of questions and give us up to date info on DBA, and serve as a second opinion. So we will be scheduling that sometime after the paperwork is complete. Next step for now is another transfusion in 3-4 weeks, with a pediatrician check up before that to test her blood levels.

So we are home now. Tired, but it was a full, rich day. Sometimes I have to remember that situations like this force us to stop for a bit, forget about the other things going on in life, and just BE. Just spend time hanging out, talking, being intentional, playing. No chores, no agendas. Sweet.

Bailey is upstairs asleep for the night, all tuckered out from the long day. I am planning on doing the same too. Ahh, but an episode of Greys Anatomy is calling me first. Thank you all for your prayers, thoughts, calls, emails, and support. We are so appreciative for you all.

In the meantime, Happy Valentine's Day this weekend.
Love, Ben Betty & Bailey