Tuesday, June 18, 2013

Day 20 NICU - Extubation!

This was a monumental day for our newest little girl! She got extubated at about 10 this morning (only 6 days after surgery!) and did a wonderful job starting to breath with only a nasal cannula. It all happened so fast. They told me at rounds that it was going to happen today and then, all at once, a couple of hours later, two doctors and the respiratory therapist trooped into the room and just did it. It was amazing hearing her cry for the first time, almost as intense as if I'd gotten to hear her in the delivery room. It is still so soft and is mostly raspy hissing with only a few little vocal mews. Once her throat is less irritated she'll get a hearty cry like other newborns. I have promised myself that I will just think about the nice strong lungs producing that sound and remember to be grateful when it is no longer a novelty. I am so in love with that little mouth.

She's doing all the work of breathing now; the cannula just provides some extra oxygen and the NO which helps the pulmonary hypertension. They'll continue to monitor her blood oxygen levels and slowly wean the levels until, eventually, she'll just be breathing room air.

Shortly after extubation
 After they did a couple more draws to check her blood gases, the also decided to remove the PAL (peripheral arterial line) from her left arm this afternoon. Notice how she no longer has the armboard in the top picture - and looks a lot more comfortable. We're down to only the cannula, the right arm PICC line, orogastric tube (for clearing her stomach, should come out pretty soon), and nasogastric tube (for feeding her). Everything else is just sensors for monitoring her stats. AWESOME! Holding her is going to be so much easier now and I plan on doing it as much as possible without stressing her out.

We have come to understand that our girl is rather sensitive to change. In order to pull the vent today, they also had to cut the fentanyl down another bit (after an additional versed wean about 2 hours previously) because it's a respiratory inhibitor along with serving roles in sedation and pain management. The combination of so many changes made her furious. She cried (raspy, hissing sound due to irritation from the tube) for a little over two hours, reawakening herself every time she started to calm down and doze off. I hated feeling so helpless. I tried everything I could without being able to pick her up. I'm not sure how long it would have lasted if they hadn't finally gotten her a dose of Atavan (sedative without inhibiting respiration). They were rather surprised at how long she stayed mad and by the time it became obvious that she wasn't calming on her own, the process of getting the order in and having the pharmacy send it up took quite a bit of time. She also started getting some methadone today to help with the fentanyl wean. Hopefully between the two, her sedation wean will be eased a bit. I find it kind of funny to have a daughter in "rehab", using methadone to wean her from her narcotic dependency. Might have to tease her about that when she's much much older, say about thirty and a productive member of society. :)

The crying fit was even more nerve wracking to watch because her heart rate already seems to run a little high (they're attributing it to just being a little irritable with all the stuff she has to deal with - sensitive, like I said) and when she gets really mad it starts soaring, occasionally breaking 200. "Normal" for a newborn is 120-160 and her usual awake but calm rate right now seems to be hovering around the 160s to 170s.

Her feeds are steadily being increased by 1ml/hr every 8 hours. She's currently at 6ml/hr and is filling plenty of diapers as testament to the efficient functioning of her intestines. Another yay! I'm really looking forward to getting to feed her through more traditional means. It's funny how her great leaping bounds of progress are making me more impatient for what is to come.

As of tonight, her weight is now 5lb. 13oz. She's gained just over a pound from her birth weight of 4lb. 11oz.

Q and his parents went to visit her this evening and she's apparently alert and looking around. Grandma Jill even got to hold her. Tonight is also the first time that she has had to share a nurse with another baby for a shift, further proof that she is doing amazingly well. All day I have had an overwhelming feeling of gratitude for how well she is doing so far. Our path has been smoother than I dared to dream in the months of pregnancy after we got the diagnosis. May she continue on this road!

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