Peaks and Valleys

We begin day six of our stay in the hospital and today Mae is 10 weeks old. Yesterday was a good day overall, it began taking out her IV drip and taking her off monitors for respiration and heart rate. (PEAK!) She continued to have good diaper output all day even after she was well off the IV drip (PEAK!) Her oxygen was turned down to 0.3. (PEAK!) Around 4pm or so, she started to desaturated when she slept. (valley...) Oxygen was turned back up (valley...) IV was taken out (PEAK!) Deep suctioning didn't help desaturation (valley...) Sitting up and using some RT vibrations caused lots of coughing (PEAK!) Deep suctioning brought up some thick mucus. (PEAK!) She slept or went back to sleep with help of the nurses from midnight until 8am (PEAK!) They took her off oxygen at 2am (PEAK!) She had great saturation for six hours (PEAK!) After her first feeding with no oxygen her saturation levels dropped into the lower 80s when she slept (valley...) more suctioning brought it back up to low 90s while she is asleep and that is where we are at. (the middle.)

That's the major rundown of where things are at. There are a lot of highs and a few frustrating lows that continue to present themselves. She has a lot of mucus in her lungs that still needs to get out before she is better and some of that mucus is still affecting her oxygen levels because she can't breathe as deep. I'm hopeful that with a little more awake time we can work on getting some more coughing and getting more of that junk OUT!

Yesterday for the first time in five days Mae wore clothes! Yep I put a onesie on her for a bit to keep her arms warm while she was waving them around the cool mist we have around her to break up the mucus and thin it out. She was happy and even a tad warm with the clothes on.


Not quite sure about these 'clothes' things anymore
Mae yesterday was talking up a storm, even when she was unhappy. One of the nurses during the suctioning (so this particular incident not as happy) swore she was calling out 'mama mama' in between the suctions. I heard it, but then I WANT to hear it.... so to have the nurse say it too was pretty impressive. Not exactly when I want to hear my daughter's 'first words' while she's being tortured, but at the same time it's heartwarming to know that she knows where her safety and comfort is. I'm not willing to stake a claim on that as her first word but I'm hopeful that soon enough it will be ;0) That same nurse also at a later time said "She's the smartest two month old that I've ever seen" :-D Always nice to hear people that are around a ton of small people on a regular basis say so! They also can't get over how strong she is. She can arch her back so much during that suction and has a good grip and pull down on the nurses hands during the suction too (she most of the time gets swaddled because of this) And last night when I laid her on her back to change her diaper, she decided to do this. I'm pretty sure if the bed wasn't in her way she could have completed the roll.


I'm outta here!
Today marks another day of getting the gunk out of her lungs. RSV is nasty in that it creates SO MUCH mucus it 'chokes' the cilia (little hairs) in the trachea. The cilia's function normally is to move around and break up mucus and allow it to avoid the lungs. The problem is with RSV the mucus makes all the cilia sticky and immobile leaving the 'moving on through' duty up to the owner of the lungs. So for adults it simply means a lot of forceful coughing and nose blowing. For babies that can't do that... it means suctioning a lot. That's where we're at. That final piece of the going home puzzle - suctioning. We've gotta get it out of her. She's been doing well coughing it up, but there is still a lot to be moved. Continue to pray for movement of the mucus and that we can get outta here soon!



My baby girl without any tubes and sleeping so peacefully!