Just a week ago, we were in a really bad place. We were getting ready to say goodbye to our little boy.
A week from today, we might be in a whole new place. We might be looking at our newly repaired little boy!
Parker had a busy day today-- heart echo first thing in the morning, followed by the removal of his umbilical IV lines. He got stuck in his heel for an arterial line that will do many of the functions his umbilical line was doing, and they pulled out his dried up yucky cord stump with accompanying tape and tubes. Now, he just has a regular old belly with some monitor leads stuck on. He got both IVs out of each hand, so those are freed up now. He's starting to look less like Bionic Commando and more like a lil' boy. His head and neck have been slowly turned back towards the other side (imagine the crick after 10 days of facing the same way!), and the fluid in his head is slowly redistributing itself. Perhaps the most significant moment of his day was being flipped in his bed so that he doesn't face the wall anymore-- he faces out towards the unit like a regular baby! Big stuff happening for the P-Nut!
I got to change his diaper today, which made my heart glad. Ever so slowly, I am overcoming my fear of my 8 pound child. After some prodding and assurances that it was okay to do so, I grabbed both of those scrawny bird legs, hoisted him up, and took care of business. He did not break. His IVs did not fall out or catch on fire. The NICU police did not rappel in from the ceiling tiles. I was so very pleased to be wiping that tiny hiney. It's just adorable, if I do say so myself!
Medically speaking (here's the boring part for most people, but the interesting part for other CDH mommies):
He's on the conventional ventilator. No nitric oxide. Respiratory rates were at 50 yesterday, down to between 38 and 41 today. He's on 40% oxygen level. His blood gasses were great all day, and they will be looking to wean him down as much as possible throughout the week. His blood pressure is a concern (it was too low several times today), but they cut back on his diuretic to help with that. The echo results should come back tomorrow, which will give us an idea of what his pulmonary hypertension looks like now that he's off ECMO and responsible for his own circulation and oxygen exchange. We are praying for good results on that and continued ease of transition to the ventilator!
I am also, selfishly, ready for him to be less sedated. I usually take the day shift, and he's unresponsive to me. (Mike, on the other hand, has now had several eye opening times during Storytime Shift. I got a poopy diaper today. Hmph! I keep reminding myself that once it's milk time, Parker will find me most interesting!) I know that he has to be sedated for many reasons-- pain management, his terrible terrible temper, maintaining his vital signs, and not disrupting the breathing tube. With his surgery approaching, his sedation level will inevitably go up for a while. Still, I am very very ready for him to enter baby rehab and get all of these medicines out of his system. That's many many weeks away, and will be a slow, gradual process. Those medicines are keeping him alive and comfortable for now, and I certainly wouldn't trade that. I've seen him restless during the last week, and I hate it. Restless and sad Parker is infinitely worse than knocked out Parker. It's a tricky balance-- now that he is starting to look more like a normal baby, part of my mind expects him to act like a normal baby. We will get there!
I have to take a minute and say thank you to everyone who sends me Facebook messages or comments on here. I read every single one of them, and I try to respond as much as possible. Please know that all of the support means the world to us, and is a large reason that we are able to carry on with this odyssey each day. Keep the prayers coming-- we have a long road. ECMO was not much of a step forward... It was a measure to pull Parker out of the negative and put him back at ground zero, as he would have been on the day he was born. We haven't even begun to deal with the whole reason we are in this mess- the hernia, the displaced organs, and the fallout with regards to pulmonary function and feeding.
Every time I am reminded of that fact, either by myself or by something the medical staff says, I think of the old Bill Murrey movie "What About Bob?"
"Baby steps down the hallway... Baby steps to the elevator... baby steps out the door..."