New baby update--skipping birth story for now....

I love birth stories--both telling them and hearing or reading them, so I'd like to tell our new baby's story. It's a pretty good one (they all are, aren't they?). But for now, I'd like to update my friends and family on what's going on with our little mister, since I've had a lot of requests for info. He's still in the NICU, and he's kinda rocking it... kinda. I mean, compared to so many of those tiny, sick little babies with hands and feet the size of Carinne's baby dolls', he's totally rockin' it! The NICU is a scary, amazing, miraculous place!

Here he is earlier today. That nasal cannula up his nose--besides bugging the crud out of him--wasn't doing much for him. It pumped dry oxygen into his swollen nose, and that wasn't helping things very much. So, they switched him to....

...A "head box." So tonight our little boy looks like this (I totally ruined the nurse's amazingly tight swaddling so you could see his size and crooky feet. I did an OK job fixing it afterwards):

He's had a hard time breathing, and they're not sure what the main cause is (well, the nurses I quizzed weren't. I forgot to ask his nurse practitioner). He's got congestion in his lungs (which could just be leftover from birth. But his white blood cell count yesterday was 25,000 when it should be 10,000, which means some kind of infection, so they started him on a couple antibiotics), and he's had the aforementioned really stuffy nose. Part of that may just be that he has smaller nasal passages, and so when they're inflamed, they're even smaller. All I know is that yesterday and this morning, his breaths were really fast and gaspy and shallow, and his stomach and throat retracted when he breathed. Since they started him on the meds and his "oxygen bar/steam room" he's done much better. (See that misty plastic igloo over his head? That's the head box, and it pumps moist, oxygenated air for him to breathe. It's warm and steamy and he loves it. My cute SIL Sarah says it probably feels like Hawaii. Heehee!) So, goal #1 is: get him breathing well on his own--no head box, no nasal cannula.

Also, do you see the tiny little blue cuff thing wrapped around his foot? That measures the oxygen saturation of his blood (pulse ox). If he can keep the pulse ox of his feet equal to the pulse ox of his hands (and also the blood pressure in his arms and legs equal), then it means his heart defect isn't as serious as we thought, and he can maybe skip surgery!!! That's goal #2. (Well, really that's goal #1, obviously, but maybe we're doing these in no particular order. I'm not re-typing this).

See how tiny he is compared to my giant, elephant, swollen hands (I know, elephants don't have hands. But they're huge, see? And so are my hands.)? He's huge compared to some of the babies around him, but still, he needs to gain some weight. That's goal #3. This part he's doing so great on. He's still below birth weight, but not significantly. He's only down about 4 ounces! That's NOTHING! If he keeps this up, he'll check this one off in no time! I'm not sure what he needs to weigh before they'll let him out. He's at 5 lbs. 5 oz tonight. I know there are babies who go home weighing way less than this, so maybe the actual weight isn't the goal--it's the continued maintaining and gaining...? I think so....

Do you see the tape on his chin, and the tiny little tube it's holding in his mouth? That's his feeding tube. He gets formula (with small amounts of whatever colostrum I can pump) in that tube, which leads straight to his stomach. HE HATES THAT THING! If his hands are free, he yanks at it. They've used 3 different types of tape to keep it stuck there, and the nurses swaddle his hands tightly so he can't grab at it. This newest tape is really, really sticky, so too bad for him--it's staying put! (Tomorrow he may be upgraded to a nasogastric [NG] tube, but only if his little swollen nose can handle it. They may decide that having unobstructed breathing is more important than letting him practice nursing, explained below:)

I don't have a photo for this next part, but I think you may thank me.... Tonight, the awesome nurse let me have some skin-to-skin holding time with him (this is big, because earlier they wouldn't let me hold him, because when I'd tried before, all of his alarms went crazy. He couldn't handle the stimulation with everything else he had going on--especially the breathing issues), and let him practice sucking. He has a pretty good sucking reflex! This is a big deal (especially for a baby with Down syndrome, since they often lack the muscle tone to achieve a good latch)! Of course, this is only one part of the whole suck-breathe-swallow routine he needs to master to be a successful eater. (So aren't you glad you didn't have to see fleshy photos of fleshy me?)

So, all of this is to tell you about goal #4: he needs to be able to take 75% of his feeds by nursing (or bottles, if we choose that route. I don't think I will, unless he just has way too hard of a time. Apparently there are occupational therapists in the NICU who can help me help him be a good nurser, so I'm definitely going to be consulting with them!). If he can take the majority of his feeds from breast or bottle, without choking or aspirating, they'll check this goal off his list.

I think there's a goal #5 that I'm forgetting.... If I remember it I'll update.... *UPDATE: I remembered just now! He needs to be able to keep his respirations down around 50 (so he's not gasping), without the oxygen. Also, his pulse ox drops WAAAAY down when he falls asleep, so he needs to be able to maintain it when he's awake AND asleep. These are both part of the whole breathing goal--#2 or something up there....

I'm off to pump another few milliliters of colostrum (I'm betting my milk will come in tonight. I remember all too well how painful that is, and I'm just a little fearful....), and then take a quick shower, so I can hurry to bed, where I'll sleep fitfully, in short bursts, being awakened all-too-frequently by my snoring or nurses taking vital signs or doctors asking lists of questions I'm way too incoherent to understand or respond to or phlebotomists coming to draw blood. I get to check out tomorrow, which is a relief in a way, but I still haven't figured out the whole routine for when I get home--how to balance time I need/want to spend at home with my other sweeties, and time I need/want to spend with my new sweetie. I'm sure I'll be picking the brains of my friends who've done this before. I'm too illogical and emotional to make sound, practical decisions right now. I'm just grateful I have family and friends who are so absolutely wonderful in their willingness to help!!! And for all of our friends who send their kind, supportive thoughts and prayers daily! What a giant blessing!

So, as a happy, parting gesture, I wanted to post a video of our little guy in action, but I remembered that Devin took the camcorder home with him to show the kids video of their little brother awake and moving around. I'll have to post it another time.

He is such a wonderful boy! When he was awake a couple times today, he tried to find out where my voice was coming from (and also Devin's and my SIL Sarah's). He's fighting hard for stuff, and he gets constantly poked and prodded and messed with, but all of his nurses have told me what a sweet baby he is--he very rarely cries (do you think this'll last when we get him home? A girl can hope, I guess....). I'm so in love with him already, and so fiercely protective of him. He's awesome! I really do feel so blessed to have him!