I have to be honest. I usually internally mock the people with the "My baby is 467 days old today!" status updates. NO LONGER, my friends. If there has been anything we've learned in this last 7 days, 14 hours, and 39 minutes (see, I can do it too!), it is to treasure every blessed second. So so proud of my boy.
Today was fairly quiet-- no real changes on anything except that they upped his diuretics with no upset of his blood pressure. He peed and peed and peed and peed and peed all day. *Note to others-- celebrating your child's pee might seem strange. And it is. But, after entering the phrase "scrotum sling removed today" in my journal, strange is a relative term.* He's getting less puffy by the day, and it makes me glad. ESPECIALLY because, as I sat here typing, Mike texted me a video from Storytime Shift:
We have eyeballs! The whole thing just makes me want to fall on the floor and laugh and cry and sing praises to God. Best One Week Celebration Ever!
So many people have already commented on what a tremendous husband I have. Trust me, I am aware. He has amazed me this week. I thought he was a fantastic Daddy before, but he has reached a whole new plane that I can't really describe to you. I don't have to, 'cause you can hear it in his voice during that video. Love that man.
In other news, Parker's day was, as I said, pretty quiet. They weaned down his ECMO a bit, but it's going slowly because the pressure on his lungs isn't going down as fast as they'd like. I am much more fine with going too slowly than too quickly. Dr. Williams stopped by before she left for her long weekend, and said that she expects him to still be on ECMO when she gets back Tuesday, but that her focus next week will be hitting it hard to get him off. He's improving daily, his blood pressure is under control, and his xrays show lung growth every day. We are hopeful.
Medically speaking, that's about it. We were treated to many visitors today-- my boy is famous! Parker has the honor of being "the ECMO kid" right now, meaning he's the only one in the hospital on it. He is now one of the stops on the Egleston tour for visiting dignitaries. Today we saw many groups pass through, some of IT/tech people looking at the electronic chart systems and some of physicians. They all stopped to see Parker's setup, which I must admit looks
What also has amazed me is how many of the staff members know about Parker and keep up with him. Lots of people who aren't technically assigned to his care swing by to see how he's doing. Our sweet sweet transport team from Northside to Egleston stops by each time they bring in a new baby (which is too often, in my opinion. So many sick babies!). One of our ECMO specialists said he logged on from home on Wednesday to check on Parker after the Terrible Tuesday episode. It makes me happy that so many people are invested in his care. And our care, to boot-- anybody who works in a NICU is taking just as much care of the parents as they are the babies. Bless their souls. I would have kicked us out by now.
We are all settled back in our house now-- we retrieved our sweet Maggie, who has spent the last day collapsed in a pile of exhaustion from playing all week with her brother. We slept like the dead in our own bed last night. Jeremiah has been most pleased to be reunited with his baseball bat and glove. We sure do miss JeanJean's Bed and Breakfast, where you eat until you burst and are fussed over 24/7. She took such good care of us all week and I love her to bits. It was so nice to be close to the hospital, and she gave us a key to keep so we can crash there whenever we need. JeanJean rules.
We are trying to set up our "new normal" routine, factoring in a drive that is now 45 minutes each way and the fact that Mike may be headed back to work in 10 days. It's hard, and tiring, but it's nothing compared to sweet moments with both my boys. Jeremiah asks every day when he can play with Baby Parker. Our standard response is "Parker is too sleepy to play right now." Now that he's opening his eyes, i.e. waking up a little, we are one step closer to having two little boys tearing around the backyard with baseball bats and swords. Hurry hurry hurry.