I liked the idea of my first head to toe update - something I should have started a LONG time ago, but hopefully I'll keep up with it weekly to see your progress. It is hard to believe you are really only 3 weeks old developmentally. This past week you've made huge improvements respiratory-wise!
Brain - stable. Your PT is impressed with your smooth movements, ability to calm yourself, your strength and your ability to be successful at suck/swallow/breathe...this all gives us hope that your IVH will not effect your development too much. Only time will tell.
Eyes - No ROP surgery!!!! NO MORE EXAMS FOR ONE YEAR!
Your bilirubin is finally below 2.0 so you no longer need actigall and you are looking less yellow! You are only on two meds and one is polyvisol which is just a vitamin. The other is Qvar which is a steroid inhaler to help your lungs. All the nurses are very impressed.
We've ditched the temp probe! One less thing attached to you! You do well regulating your temp and they aren't concerned that you are burning too many calories keeping warm. Now they just take your temp at care-times.
It seems you have a little bit of reflux even though you don't spit up. You often make an awful painful face out of the blue then cry, and settle back down. Who wouldn't have reflux with a tube down to your belly for your whole life!?
Lungs - You still have that wheezing old man, smoker cough but this week you've weaned from 1.0L at 30%O2 on Monday to 0.2L at 100%O2 Thursday! You could go home on 0.2! And you are still satting at 100%. Way to go!!! I actually found your cannula up by your eyes today. I'm not sure how long it had been there, but your sats were fine and you were breathing room air for a little bit! The nurse said the same thing happened to her, but she found the cannula blowing in your mouth and you were sucking on the prongs. You love to tug on all your tubes.
Belly/Feeds - You're taking about 50% of the volumes by bottle before you tire out, the rest through your NG tube. You finished your 4th full bottle yesterday! But speaking of tugging on tubes, you pull out your NG tube quite often...at least a few times a week. You are not ready for medium flow nipples yet. When a nurse gets you who doesn't know this or listen closely to report they will feed you with a medium flow nipple and you choke and brady/desat
Hernias - no date set for the inguinal hernia repair (take-2) So no talk of discharge. The umbilical hernia keeps getting bigger and bigger!
You love to have people talk to you and you settle down to voices. You love your paci and still hold it in pretty well - when it falls out your are mad. You still like to be swaddled but your hands have to be loose by your face - no more tight swaddling, but you still need containment. You love to have your head rubbed. But Mommy still gets a little sad feeling the stubble on your head from where your hair was shaved for your PICC lines. You've come a long way little boy!
You were 3500g or 7lb 11oz yesterday! and 19.4 inches.
Dani, your partner in crime, is going home tomorrow. I'm excited for her, but feeling very lonely now at NCH. Our two good friends are home. When will it be your turn?
He'll be home sooner that you think!!
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