Hi from the NICU.
My parents have been pretty busy this week and have yet to write an update on my progress. You'd think with all I have to work at just to breathe that they'd understand that I don't need one more thing to do. But--I am coming to a family who likes to teach kids to work, so I guess it's high time I learn my lessons.
I started the week by meeting the ventilator in the boxing ring. With a one-two-punch, he knocked me out. My lungs deflated and mucous built up in those pink sacks. The Coaches decided I wasn't quite up to battling such a formidable foe. They took me out of that ring, and kept the ventilator at higher settings. By Saturday, the ventilator foe took down his punches a few notches. I'm now in training to wean completely off this circuit, but it takes day-by-day exercise of my lungs and very slow progress to turn down the settings. No one wants to see my lungs collapse again.
In a winning match, I punched the daylight out of my Nitric Oxide Machine this week. I now carry less tubes, machinery, and beeping in my room. My prize for winning that fight was a new bed AND a new room! Yes--I moved from the "Critical" part of the NICU to the more stable patient rooms. I have a room with a view! I have natural sunlight to brighten my day and starlight to gaze on at night. Additionally, I share my nurse with another baby. This means that I'm getting so good at throwing punches that I don't require full-time coaching anymore. It's a good thing too because lots of preemies entered the NICU this week, and the coaches are needed elsewhere.
I got beaten up by another formidable foe this week: resurgence of pleural fluid (fluid around my lungs). I have a moderate accumulation at the base of my lungs, but it is not impacting my ability to inflate my lungs or breathe yet. The medical team said they can either drain the fluid again and test it for chylothorax OR put me on a fat-free diet to see if it makes a difference so they can then assume it is a chylothorax. (I've already been tested for chylothorax twice--No chylothorax!) Since I'd been beaten up so much this week, they went with the fat-free diet. So--now I don't get my mommy's milk. Instead I get a synthetic brown sludge made of water, corn syrup, milk protein, and chemical nutrients. Grr! Intermixed with this, I'm getting pasteurized donated breastmilk from the donor bank. It has been spun to get rid of all the fat (and many of the enzymes and anti-microbial properties, too). As if I didn't have enough to deal with, right? Fat-free diet at my age? I mean what weight do I have to reach to get into these boxing matches anyway?
The best thing this week? Kangaroo Care! This means that my Mom and I got to snuggle skin-to-skin EVERYDAY! This is great therapy for both of us and helps me recover from all my fights. Mom gets to hold me for 1-2 hours every day (its the first time I've known her to just sit still--see very good for her). It is quite a feat to get me out of bed. It takes a nurse, a respiratory therapist, and my Dad to get me transferred. First they have to disconnect all these tubes; quickly the respiratory therapist unhooks my ventilator, my Mom picks me up and holds me to her chest, not letting my head turn (lest I pull out my feeding tube and air tube--which tempts me highly!); my Mom backs into a recliner, and the therapist rapidly hooks the ventilator up again, as the nurse and my Dad rearrange all the other tubes, and tuck pillows around my Mom and me and finally cover me with warm blankets. We repeat the process when its time for me to go back to bed. Even though it takes quite an effort, this therapy helps me learn to breathe, grow, and bond. It is one of the most effective therapies available to preemies like me. I keep hoping my Dad will want to hold me . . . but, he's just not into hospital gown fashion yet!
Well I better get some rest. I have an entire week of fighting matches before me. I hope you'll continue to remember me in your prayers. I need help getting rid of my lung fluid so I can return to my Mom's healthy milk. I need help learning to breathe without a ventilator. I hope you know how much your prayers do mean to me and to my family. May you feel strengthened as you face your own formidable foes this week!
With love,
Little Adelaide-Lemonade
