Future player?

Yesterday while helping one of my kids clean his room, I came across a top-secret journal, but because I have no scruples or respect for my kids' privacy, I'm sharing something I found in it with you. It's too funny not to share.

On one side of a page was a heart with [my kid] + [cute girl in his class]--see? Maybe I'm not completely heartless if I don't divulge names--written on it. On the other was a detailed, 4-step plan of action:

Plan A: Get close to [cute girl] and kiss her. FAIL

Plan B: Tell her to close her eyes and kiss her. FAIL

Plan C: Tell her to come really close to you, then kiss her. FAIL

Plan D: Pretend to tell her a secret, then kiss her. IN PROGRESS

News from the NICU

Last night was so incredibly discouraging. I'd fought pretty much all day (nicely) with the nurse practitioners, who insisted they'd NEVER let our baby out of the hospital with an NG tube. So then I demanded (nicely again) that they take the NG tube out and let the boy prove himself. His nursing and bottle-feeding sessions were vigorous but short-lived--he zonked out really quickly and was impossible to wake up to keep eating. I still maintained that he'd do better at home--that he's not sick and just needs some time to figure things out. I pleaded with them to let me take him home, promising that I'd get a home health care nurse, or take him to the pediatrician for weekly weigh-ins. Not good enough for the NICU Nazis. So then I tried asking them to let him come home with the NG tube, if need be. My pediatrician had already told the attending that he'd be willing to help with that. Absolutely not--apparently the attending physician who's on this week has only sent ONE baby home with a tube, and my baby's supposedly a terrible candidate for one because of his low tone. (Can I just insert here that with as many times as they reminded me my son has Down syndrome, so his needs are different than a "normal" baby's, I wanted to scream? I'm well aware of ALL the different things that come with Down syndrome--I've been researching and studying and talking to tons of other moms for months and months. I'm not going into this blindly.)
My baby's nurse that day was such a grouch! She saw me crying in my chair and told me all kinds of super-unhelpful, non-uplifting things--"Look how his saturation levels are dropping (even though I'd been told by several nurse practitioners that the pulse oximeter is notoriously unreliable when the baby's moving, or the plug isn't on a flat surface).... You need the blow-by (oxygen mask). You know, most babies here have the nasal cannula for oxygen. None of this business with the head box or blow-by. No need to mess with those things." When I told her the head box was mostly for humidity because his nose gets really stuffy, and that they took him off the nasal cannula days ago because his oxygen saturations were consistently too high with it on, she said, "Oh, really?" sarcastically, and shook her head... And here's more from our own Nurse Ratched: "He only nursed for a few minutes, huh? So we probably don't even need to weigh him again" (again, voice dripping with contempt, or sarcasm, or something negative). Then she asked if we could finish his feed with the tube, which is when I basically begged to have the tube taken out. She went and asked the nurse practitioner for permission, and then came back and said, "You want the tube out? Here you go," and roughly wiped his little face with adhesive remover while tugging on the tape. She had been told by the nurse practitioner to wait till he'd digested his last feeding so he wouldn't spit up, but she did it immediately. I SWEAR the feeling I got from her was total spite. Then, as I was sitting in my chair crying after a disappointing discussion with the nurse practitioner, she said, "You know, you COULD sign him out of here AMA if you're so anxious to get him home. But then the hospital would sue you and come after you for all the money you owe them for his stay here. I can guarantee your insurance wouldn't cover anything if you did that. But, it's an option you might not have thought of." I heard her complain about one of the babies in her charge to one of the other nurses. That just cemented in my mind that she was either having a REALLY bad day, or she should maybe look into another profession. She is NOT my favorite nurse, and I'm praying she's not on today....
So, anyway, during and after his last feeding of the day before I came home, his oxygen saturations dropped to the high 50s a number of times, he stopped breathing at least 5 times (apnea), and he had 2 "A & Bs"--oxygen sats dropped AND heart rate dropped to the low 70s. SCARY! I had requested that he be allowed to sleep as long as he wanted between feedings during the night instead of being woken up every 3 hours (who wants to start THAT schedule before he comes home, right? And also, then he could be well-rested for daytime feedings), and the (nice, sweet, compassionate) night nurse said the longest they'd let him go would be 5 hours between feedings, but she'd let him go that long. She told me he hadn't had many wet diapers, that he'd lost weight since yesterday, that he'd needed oxygen through the night before as he slept, and that those things combined with last night's "episodes" were his signals that he was still too weak for oral feedings (all of this was said with empathy and kindness, I should add. She apologized for bringing up that possibility, and said she was just trying to prepare me in case they needed to place the NG tube again.). She said she'd try her best with the bottle-feeding on demand through the night.
I left the hospital scared and sobered and so, so upset. Another month of leaving the big kids to go practice feeding the littlest one loomed ahead, and I felt completely deflated.
Fast-forward to this morning, when the phone rang. The caller ID showed it was the hospital, and my stomach lurched. What bad news were they calling with? It was today's nurse practitioner. "Mrs. McKrola, let's get this boy out of here." WHAT?!?! Not even CLOSE to what I was expecting to hear! I was too shocked to ask what brought about this drastic change of heart. She told me to bring his car seat today to see if he'd pass the car seat test, and then we could consider discharging him sometime tomorrow (IF he does well today)! She said they'd teach me how to place the NG tube and check for placement, and he could come home with oxygen, too (for sleeping and eating). I told her I wasn't expecting any of this, considering what a tough time we'd had yesterday. She said those were all feeding-related episodes, and since I'll be with him as he eats, it would be fine.
Isn't it incredible how quickly things can change (it's quite possible that my constant praying all day yesterday had something to do with it, don't you think?)? I'm off to the hospital to hang out with the little dude. I have so many questions. The answers don't really matter too much, as long as I can bring my boy home, but I'm still curious.... Does this mean he did great during the nighttime and morning feedings? Did they finally get to chat with their lawyers to see what their liability would be, and what waivers they needed me to sign?
PS: I just want to add that I'm not a total crazy person and won't insist on bringing him home if he doesn't seem ready.

NICU black hole

Our little boy is SO ready to come home from the NICU! He's completely off oxygen, his jaundice is pretty much gone (bilirubin levels are veeeery close to normal--nothing even close to requiring phototherapy), his blood counts are all normal, he's back up to birthweight (actually one ounce over--5 lbs. 10 oz.), he's got no more IVs in his hands, and he's maintaining his body temperature on his own.

The reason he was admitted to the NICU in the first place was for his suspected heart defect. They've ruled that out (yippee!!!), so what's the deal? Why is he still in there??? Devin and I asked the charge nurse practitioner a couple nights ago why he was still there, since he seems like he may just be the healthiest baby in there, even with his extra chromosome ("genetic enhancement"). She agreed with that, but said he needs to be able to take 100% of his feedings orally before they'll remove the NG tube (the feeding tube in his nose) and send him home. I've tried nursing him about 4-5 times a day for the past few days (he's on an every-3-hours schedule), and he IS really sleepy and hard to wake up before and during, but he's so good at it once he gets going.

Apparently the only reason he's got the NG tube is that babies with Down syndrome have low tone and can't handle nursing or bottle-feeding very well--it tires the poor little things out and they'll develop an oral aversion if they're "forced" to keep trying. Huh! Well, this baby with Down syndrome has a very powerful suck (yowch!), and he's got the suck/breathe/swallow pattern down pretty dang well. It's SO INCREDIBLY FRUSTRATING being told that he can't do something when he's proven time and time again that he can! They automatically give him a tube feeding unless I'm there and ask them to please let me try nursing him first, or Devin's with me and tells them to step away from the feed tube and give him a chance to nurse or take a bottle. If he wakes up on his own, they feed him a bottle (which is actually fine with me--even though I'm stubbornly dead-set on nursing him--because he's awesome at downing a bottle, and if that gets him out of there faster, I'm all for it, even if we have to learn how to nurse once he's home). It IS true, from what I've heard and read from other moms of babies with DS, that they do tend to be sleepier, in general, than other babies. So, it might take a little more effort to get him to wake up for a feeding, but it's worth the effort to try. Sticking a syringe of milk in a feeding pump and pushing a button to get it going is a heckuva lot easier than working with him for almost an hour to get and keep him awake and help him take a whole bottle. It's all about convenience, in my opinion.

So, here's the analysis of the black hole that is our NICU stay:

--goal is that baby takes 100% of feeds orally --baby is automatically given tube feed unless he a) wakes up on his own at the exact time of his feeding, b) Devin or I aren't there, or c) takes too long with nursing or taking a bottle when we are there.

Do you see how mind-blowingly ridiculous this is??? They want him to eat, but they hardly give him a chance to try! If we were to wait for him to take all of his feedings orally using their method, he could be in there for over a month! One of the nurse practitioners told us that they could send him home with the NG tube--that they'd show us how to insert one and check for correct placement--so he could go home sooner. And the very next day, a different nurse practitioner told us she was sorry, that that was something they couldn't do. ARRGH! I just know that if I could bring this boy home, we could work all the livelong day on nursing, since I wouldn't be wasting hours driving to and from the hospital twice a day and trying to split my time between home and the &$*#@ hospital, and he'd rock it! The NG tube is completely unnecessary!

My friend Lexi suggested that I get a pediatrician to evaluate him. I wasn't sure how to go about finding one that would do that, so last night I called my regular pediatrician and explained what was going on and asked him for any advice or names of docs who could go check our baby out. When I was done telling him the whole tale, he was almost as irritated as I've been, and said he'd call the NICU's attending physician and see if we can't get our baby busted out of his jail. So, this morning I called the NICU first and asked if my doc had talked to the attending yet, and he had, but they wouldn't tell me what had been decided. Then I called my doc, who told me he'd reassured the attending that he'd be willing to monitor our baby for weight gain weekly if needed, and even assist in managing the NG tube, if necessary.

So, now we wait. The attending physician still needed to do rounds with the NICU staff, where they discuss all the babies' issues, so I won't know till later what's been decided. Meanwhile, I'm going to assume he's coming home TODAY, and bringing a car seat to the hospital with me. He still needs to pass the "car seat test" (he has to show he can hold his head up while seated in it, without his head falling forward, potentially blocking his airway). Now that I think of it, this may actually be a challenge.... Because of his low muscle tone (courtesy of the Down syndrome), he's really, really "floppy" like a rag doll. So, this is what I'll fervently be praying for today--that the attending physician signs his discharge papers, and our boy passes the car seat test. Wish us luck!

Awesome news!

Devin and I got to spend almost 6 hours with our baby boy today. It was so nice! He's able to be off the oxygen for much longer periods of time, so we just held and held him. His oxygen saturation still drops really low if his airway is in any way bent or twisted (like his chin is down or his head is turned a little too far), or if he's in a deep sleep. I got to try nursing him again. He's pretty bad at it so far, but I'd say there's hope for him yet. He just wears out so easily and can't quite figure out the mechanics of it all. He's still right at 5 lbs. 5 oz., so he hasn't lost any weight since yesterday. Way to go, buddy!

The highlight of our visit, besides all the snuggling, was the visit from the neonatal nurse practitioner who's in charge of his care. She told us he's getting closer to coming home! Yee-haw! The past 4 days have felt like such a long time. She said she can't hear a heart murmur anymore today, which means--cross your fingers--his ductus arteriosus is probably closed, and there probably isn't a coarctation of the aorta! The ductus is the part that "hooks into" the aorta, which is open in utero but closes up within a week after birth. If there were a coarctation, then the baby would get sick in a hurry once the ductus closed up--blue lower extremities and other stuff. She said if he's still doing OK in about 3 days, we can be sure that's not what we're dealing with, which means NO HEART SURGERY!!! I can't begin to tell you the intense relief that news brought us! We went from being told there was a 95% chance he had a coarct while in utero (from 3 distinct signs the cardiologist had seen on the fetal echocardiogram) to now thinking his little ticker's just fine! It could just be major luck, but I'm gonna guess all the prayers that have been offered in behalf of our little boy may just have something to do with it, maybe. So, anyway, looks like our baby needs to be able to be off the oxygen all the time, take most of his feedings from nursing, and have his bilirubin levels stay low enough to not need the bili lights (he's a little jaundiced), to be able to come home. None of this is a very big deal, is it, when compared to heart surgery? NOPE! He could be home by next week! (They might even consider sending him home with the nasogastric tube in, and train us on how to do gavage feedings to supplement the nursing.)We're hoping for sooner, of course. I mean, I'd be a little scared to bring him home right now, because he still feels so fragile, but driving back and forth to Salt Lake (about an hour each way) is already really old. And leaving the big kids at home when I go down there, and leaving him down there when I come home--I hate it! I don't know how people do it who have babies in the NICU for months! I just want things to go back to normal--or at least start our new normal with a special little baby in the house.

I've had several people ask how I'm doing with all of this. I haven't really thought about that a lot, except that there's no time during the day or night when I'm not completely and utterly exhausted. I thought maybe having a quick labor and delivery would mean I wouldn't feel like I was hit by a bus--no such luck! Being exhausted and having surging hormones and worrying non-stop about our baby's health and heart--and then being told I can maybe stop worrying about his heart--and feeling like I can't handle splitting myself between 2 places for even one more day and all the other stuff that's going on inside my brain (including seeing Devin's clothes laid out for an early meeting in the morning, which means I have to get 5 kids up and ready and out the door to school by myself in the morning--a daunting task on a normal day, for sure, but when I'm this tired, it feels totally impossible. So I went and crumpled onto our bed and sobbed when I saw those clothes sitting there, and Devin took pity on me and said maybe he could skip the meeting. Yes, please. Can't dads take a couple weeks off work after a baby's born to help the mom not lose her mind?). So, yeah, all these thoughts lead to some distress. I still try and count my blessings, and remember that this is by far NOT the toughest thing I could be asked to deal with. You know, trying to keep perspective and everything. I'm so tremendously grateful for my parents helping so much, and also Nicole, and friends and neighbors and family visiting and bringing us tons of awesome food and people continuously sending good wishes and letting us know they're thinking about and praying for us. I don't know how I'd handle the emotions if it weren't for all the support--I'd feel alone and let depression take over, I'm sure of it. But, still, the fatigue makes everything feel SO HUGE! I just want to go to sleep for a few days. Actually, with that in mind, I'm headed to bed ASIP--As Soon as I've Pumped. Moooo!

Enjoy a couple photos of some daddy/son bonding time. Good night!

When Mommy's exhausted, Daddy takes a nap. Babies are better than sleeping pills!

Daddy trying to wake the boy up for a feeding.

PS: Still no name. You'd understand if you heard some of the suggestions Devin throws out. UGH! Caboose? Quaidius? I can't even remember half of the ridiculous names he's come up with.