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!

My version of events

Our baby K-sound (as my SIL Michelle dubbed him) was breech till today. I was adamantly opposed to his breech-ness, because I wanted to avoid a c-section. Something about scalpels slicing into my skin and entrails frightens me a little (and mostly I wanted to avoid the recovery afterwards, because of all this baby's issues. I didn't want my own issues getting in the way, you know?). We were treated to an external cephalic version (ECV) this morning, and because I'm a total nut for medical procedures, I've got to document this one.

I'd half-heartedly tried to get him to flip during the past couple weeks using various methods I found online, but since they mostly involved hanging out partially upside-down, so that my lungs and stomach were squished by fluid and baby, I was less than diligent about continuing any of them. I found a couple videos online of an ECV being done, and the women having the procedure seemed like it was no big deal, like this one: http://www.youtube.com/watch?v=6AM6wDwTjmc. She seems so placid--no grimacing, flinching, crying out in agony. So I thought, after watching her, that maybe it'd be a little like a rigorous massage, and I wasn't all that nervous going in today.

Yeah, it's not like that. That woman's either doped up on painkillers, or she's a psycho who enjoys pain, or the doctor's just not pushing very hard. I should've known something was up when almost every medical staff member who came into my room told me to relax about it. Well, I WAS relaxed, till they all started talking like that. So here's how my version went down:

First of all, I had Devin and Christian (the 3-year-old) with me. Christian should've stayed with someone, but I didn't realize it'd take as long as it did. I was thinking 2 hours, tops, and he's come with me to lots of appointments and done great, especially since I started bringing the Backpack of Fun with me. Still, even though Devin was there for emotional support for me, he wound up keeping Christian entertained a lot of the time. It took over 3 1/2 hours. Take it from me, if you ever have to have a version done, find someone for the little kid(s) to hang out with. I wound up squeezing a nurse's hand instead of Devin's, since he was keeping Christian distracted. Hers was tons daintier, too, and I may actually have inflicted a little damage....

I'd been thinking it'd go something like this: bare belly, ultrasound to check position, shove baby up and over, monitor his heart rate, go grab a burger at Red Robin. Nope. Not exactly. When we got there, I was asked to strip and don an airy hospital gown. Anytime one of those gowns is involved, you know you're in for some good times. Then they checked me in as an inpatient, got an IV going, and took some blood (all of this in case something scary happened and baby K-sound needed to be taken by emergency). This was starting to feel like a little bit bigger deal than I'd anticipated. They explained the procedure, I signed some consent forms, and a resident came and checked baby's position with an ultrasound, and a nursing student came and watched everything and listened to my lungs and checked my reflexes and junk. When you go to a teaching hospital, you get lots more involvement and observing from seemingly random people than you would elsewhere. Fine by me. I'm no prude.

I signed some more forms, and then waited. For quite a while, actually. I got to listen to and watch baby's heartbeat, and watch the strength of contractions, on the monitor next to me. Devin took Christian for a little walk because I was afraid he was getting antsy (Christian, not necessarily Devin), and I wanted to avoid a meltdown in the middle of the procedure (from either one of them). As they were roaming, I got some Fentanyl (a painkiller similar to, but more potent than, morphine. AH-HA! I figured that explained the psycho lady's calmness during her version. I asked for the smallest dose, because I'm particularly sensitive to pain killers) in my IV, and a shot of terbutaline in the arm (to relax the uterus so it wouldn't contract while they were smashing on it).

Just about the time the Fentanyl took effect (which I knew had happened as soon as I felt like I was floating and nothing was real anymore) an audience of scrubs-clad people filed into the room. A nurse, an ER doc whose aspiration is apparently obstetrics, a resident, a fellow, a nursing student, and an OB. One of them did another ultrasound, and they discussed things amongst themselves, and I'm pretty sure I cracked a couple jokes, because that's what I do when I'm hopped up on stuff, or when I'm nervous or in pain. I still felt nervous, too, in spite of the drugs. But it was a good nervous, a happy nervous, and a funny nervous.

So then when they figured out their plan of action--which included lubing my belly up with gel--they told me they were going to start shoving on me so hard I'd feel like my skin was tearing and probably all my ligaments and other abdominal tissues, too. Actually, they should have told me that so I'd be ready for what was coming, but all they said was that I'd be feeling some pressure and some pain. Quite frankly, it hurt like the fiery depths of hell. These 2 female doctors were small, and yet surprisingly strong (is there a strength-training program specifically designed for physicians, I wonder?). They put their hands around the baby and pushed till their arms shook from the effort, never slackening or releasing, so baby wouldn't slip out of their grasp. Apparently, I did super awesome--I know because that's what they told me. I don't remember swearing or kicking anyone or even drawing my breath in sharply. I know I cracked a couple more jokes, though, very quietly and with my eyes closed, so that was Devin's clue that I was in mega-pain. Oh, I should probably write an "I'm sorry" note to the sweet nurse who offered to let me squeeze her hand. As I said, she was dainty, and I squeezed hard. All of the effort I put into keeping my tummy relaxed I diverted into squeezing her poor little hand.

So after they quit pushing and I quit seeing stars, they did another ultrasound to check the little mister's position. After all that, his head was smack-dab in the middle of my belly. What the...? They all seemed very amused by his antics, but me, I knew this only meant they'd have to shove and brutalize some more. Apparently he was all in a ball. So they decided they'd try turning him the other direction, but no matter how hard they shoved that way, he wouldn't budge. Back to the drawing board... OK, let's try one more time turning him the first way, and this time, we'll give it all we've got. What? You mean you've got more brute force in reserve??? Alright, I guess let's just go for it. (They actually asked me if I was ready. I don't remember saying yes.) So again they pushed, again I focused on the hand-squeezing and tummy relaxing, and again I saw stars all around. I don't think I cracked any jokes this time, though. I just focused on those stars and the hand-crushing. They told me over and over again how great I was doing, and I wanted to ask how they figured that--do other women make primal, guttural noises or scream or something? And if they do, do the nurses tell them they're doing crappy and to get a grip? Maybe they'll use me as an example to the loud, wussier women who come after me--"I don't see why you're making such a fuss. This lady was in here the other day for the same thing, and all she did was close her eyes and crack jokes."

So, eventually, they felt like he was head-down, and another peek with the ultrasound machine confirmed he was. Hooray! So they monitored his heart rate for about 30 minutes (with me sitting up to encourage him to stay head-down) to make sure he'd tolerated it all well, and the Fentanyl wore off, and my round ligaments hurt like a mother for about 15-20 minutes--which they would, I suppose, after being torn to shreds like they were. And then, when they were satisfied he was doing OK, I got to ditch the gown, get dressed, and be released to Red Robin for that burger I'd been craving (oh, I forgot to mention I'd been fasting since 8:00 the night before). So far, no bruises have appeared. If I develop some gnarly ones, I'll be sure and post a picture! Ha! So, actually, this procedure (for anyone who might one day be facing one) was extremely uncomfortable and even hellishly painful, but in all, the suffering only lasted a total of about 15 minutes. Totally doable!

The next step is a non-stress test on Monday (like I've been having for weeks), and a routine visit next Thursday with my high-risk OB (followed by another NST), and then an induction is scheduled for 7:30 am Monday, April 4th! That's 11 days from now! I need to figure out what to do with my other kids. And buy a car seat. And all kinds of other stuff I've been putting off.... I'm just gonna hope and pray this little boy keeps his head down till then (they told me there's only a 3-5% chance he'll revert to the breech position. He does like to defy odds, but maybe this time....)

The flip side of the coin

My friend Lexi (you know, the one who is wise and amazing and has a boy with autism and a little girl with Down syndrome, and who I'd say is my soul sister if that weren't so totally cheesy?) had this great blog post about perspective, and now it's gone, so I can't link to it so you can read for yourself just how great it was. But it was really, really good, take my word for it, and I've been thinking about it a lot over the past couple days. It's been in the back of my head as I've been throwing myself this extravagant pity party. She wrote it after her little girl came home from the hospital for the 2nd time because of pneumonia, and after the earthquake and tsunami that ravaged Japan, and after finding out her friend's little girl has a mass in her stomach that may or may not be cancerous. And it was so, so impressive that she could see past her pain and stress and worry and see those people around her who were suffering.

I just got home from a funeral. It was my friend's little boy who passed away. He was almost 6 months old, and he died in his sleep, in the middle of the day, after she put him down for a nap. He had fought valiantly through 2 months in the NICU after being born 10 weeks early at 2 lbs. 12 oz., and had been home almost 4 months. As a mom, I can't think of anything more devastating than having to bury one of my children. When the 4 pallbearers walked into the chapel carrying that little miniature coffin, it was so heart-rending--it literally took my breath away for a few seconds and made me weak in the knees and my body tremble. And the poor mommy looked like she hadn't stopped grieving and crying since Monday, when he passed away. (And I wanted so desperately to take all that aching pain away.) We came home after the funeral, and of course, the family went on to the cemetery to lay his little body in the grave. I can only imagine the heartbreak of this poor mommy as her little boy's body, which she'd held and kissed and rocked and loved for such a short time--and yet so fiercely because he was almost taken from her right after his birth and she wasn't going to let him go that easily--is separated from her for the rest of this life. I'm sure that for now at least, even the knowledge that she'll get to hold him again is minimal comfort when her arms ache for his warm little body to snuggle right now, and tomorrow, and next week.

Last week, one of my good friends rushed from her home in Idaho to central Oregon to be with her family as her brother died in a hospice room. He was about 30 years old, and left behind 3 little kids and a sweet wife. He'd had melanoma a few years ago, which had gone into remission, only to resurface as a tumor somewhere else, and that cancer spread so horribly rapidly and took over his whole body in just a few months. His suffering was terrible, and he's now thankfully been released from all his pain, but still--his wife is now a widow, and his little kids have no daddy.

Why do I share these 2 terribly gut-wrenching stories? Because I know that what I'm dealing with and fretting over with this baby I'm carrying really is so very, very small in comparison to so many tougher things in life, and I've lost perspective. It's like crying over a hangnail when the person next to you has no arm. Or something (this makes sense in my head). And the hangnail hurts and you don't have nail clippers to cut it off, and you obsess about it and it snags on your clothes and other things, and it's always right there, driving you crazy no matter what else you happen to be doing. But, still, it's only just a hangnail, and that person next to you has no arm. And you look at them and realize that even with your painful hangnail, you can do lots of things like play with your kids and fold laundry and make the bed. It might be annoying, but you have both your hands to do the things you need and want to do. And that poor person next to you with no arm is, well, basically just much worse off than you are. So you're maybe crying about the stupid hangnail bugging you (haven't you ever cried about a hangnail? Let's pretend you have), and through your tears you look over and glimpse that person missing an arm and realize how foolish your tears are over something so insignificant. And you remember your blessings and feel so grateful.... But, still, maybe when you haven't seen that armless person in a while, you forget and start feeling sorry for yourself again about your dang hangnail.... But hopefully you're smarter than that and remember that your life is so good and you have a great family and wonderful friends and access to wonderful truths contained in scriptures, and a personal relationship with a God who really does love you and won't leave you alone, ever, (and this is where the hangnail analogy falls flat on its face because it's so shallow), and because of all these wonderful parts of your life, you can have the strength to make it through whatever comes your way. Not to mention that you really don't have to look very far to see someone whose life sucks a WHOLE lot worse than yours does. That's all a part of perspective, and I'm so glad Lexi reminded me of it.

I feel a gloomy, self-pitying post coming on....

I just got off the phone with one of the hospitals I went to during this pregnancy--again. Seems we owe them several hundred bucks, and our account is overdue, and they're about to send us to collections, but wanted to give us one more opportunity to pay our bill before it reflects negatively on our credit. This is a bill I've been working on for months, getting pre-authorizations and appeal letters from doctors. Of course, the part I've been working on--the genetic testing (amnio)we received--is only one part of the whole bill. I guess I should feel happy that we no longer owe $3500 and are now down into the 3 digits instead, but I'm not one bit happy. I'm ticked off. The part that we still owe (besides our co-pay) is for the genetic counseling we received after the level 2 ultrasound, and before the amnio. It all happened so fast that day--we saw a couple of "soft markers" on the ultrasound, and were told that the only way to know for sure whether our baby had a chromosomal abnormality was to do the amnio. We said we'd like the amnio, and when should we come back for that? The doc told us she could do it right then, but that she was going to send in a genetic counselor to talk with us first, to prepare us for what we may discover. The counselor took a detailed family history of everything physically and emotionally and cognitively wrong with any of our family members (and I swear I could hear her thoughts as she wrote things down--"And you keep having more kids because....?" I bet that was a real puzzler for her, considering our family's... unique gene pool. And I felt compelled to explain to her that this baby was a little whoopsie surprise). And she left and we had the amnio. Well, the lady on the phone today told me that most insurances don't cover genetic counseling. My thought was, "Well, if that's pretty common knowledge, then wouldn't that have been a great tidbit of information to share with us before sending the genetic counselor in?" Stupid hospitals. Stupid insurances. So I pulled out the only tool I've got in my arsenal these days--tears. I actually didn't do it on purpose, but I broke down crying. Here I'd just spent almost 2 hours on the phone with our new hospital (where we'll deliver) and our insurance, trying to figure out what will be covered and what needs pre-authorization, and getting CPT codes from one to give to the other. Do you cover this hospital? What about this procedure? What about this one? And heart surgery? And a NICU stay? Do I need pre-auth for that? Oh, I need to call the hospital and get a CPT code first? OK, I'll call you right back.... I was feeling like I was being so on top of things and proactive and responsible, and just when I'd cleared all that up, I get the call from the other hospital about my delinquent bill. Aaaaand, I went right back to feeling like a clueless loser.

The reason this feels like such a big deal to me is that, really, this baby so far has been not a whole lot more to me but 5 months of constant puking, overlapped by 5 months of worrying about diagnoses and bad news and more bad news and doctor visits and tests and more doctor visits and then more bad news and pain everywhere and dealing with insurance companies and worrying some more about surgery and wires and isolettes and when and where do we start the clubfoot treatment if he's at this hospital for his heart surgery, instead of the other, free hospital where I had treatment set up, and oh yeah, he's breech and I may need a c-section (which isn't such a big deal, but come on--we've got so much other crap going on with this kid, couldn't we at least skip one surgical procedure?). And my mind always, ALWAYS flashes forward to what other issues will crop up because of the Down syndrome once he's here. Feeding, breathing, gross motor, fine motor, immune deficiencies, bowel problems, leukemia? In contrast, what have I worried about with my other babies? What colors to do their room in? How they'd fit in with the other kids? How overdue they'd be? And I know that this baby will be a huge blessing in some miraculous, beautiful way that I just don't understand right now, because lots of people have told me that it would be that way, and I trust them. But I don't get it yet. So far, he's just thumps and bumps in my belly and a blurry image on a screen and a heartbeat I get to hear at least twice a week and a diagnosis or two and several pending procedures. Oh, and looming, friggin' gigantic hospital and doctor bills.

The suckiest part of all this worrying (well, there are a couple suckiest parts) is that I'm so wrapped up in worrying about stuff I can't change that I obsess and research and forget how to enjoy great stuff around me. I have 2 sisters-in-law who are expecting babies a few months after my baby's due. That should be so fun and exciting, right? In fact, we were pregnant together when I was expecting Christian, and it was so fun. We took belly pictures together and stuff. But what do I do this time? I cry when I'm around them and they're talking about baby stuff. I picture their babies next to mine in a year or so, and their babies are doing all the stuff my baby can't do because of his delays. And my baby will be getting all kinds of awesome therapy from the 3 types of Early Intervention therapists who'll come to our house and work with him and teach me how to work with him. And he'll still be way behind, even with all of his hard work and their hard work and mine. And their babies will just learn that stuff, because they'll try it and they're at the right developmental age for it. And so I'm a horrible, horrible sister-in-law who can't be happy for her family members who are excited about adding to their own families. They're talking about accessories they're buying and stuff they're making and diapers they're stockpiling, and I haven't even bought a single thing or pulled out a single onesie from the storage bin, all because I've been so afraid since hearing those 2 words in the doctor's office--Down syndrome--and making the terribly ill-conceived decision to research stillbirth rates.

I don't like being stuck in this gloomy, self-pitying place. I want to be excited that there's a new little spirit joining our family who'll bring us joy I can't conceive of. And sometimes I actually am. I get glimpses of peace and comfort, but only when I allow myself to, when I shut off the worry roiling in my mind. I read stories of other parents who've started along this journey before me, and I think maybe it won't be so bad. Maybe it'll actually be really, really good. But before I can join them on this journey, I have to get past the scheduled external cephalic version (where the doc will attempt to physically force our baby to tuck and roll into the vertex--head-down--position in my pelvis). And then the scheduled induction if that works. And then maybe I'll get the chance to hold him and kiss him for a minute before he's whisked away for echocardiograms and tests and his own little isolette in the NICU. And I'll get to hold him and feed him and snuggle him in there sometimes before a surgeon cuts him open and cuts into his tiny little heart and stitches the broken parts back together. And I'll continue to worry for a while, because even though the surgeon will have done this procedure hundreds of times before on babies just as tiny and fragile as mine will be, it'll be the first time I will have handed over my own little infant to a team of gowned and masked surgical team members and trusted them to return him to me safe and alive, and I will have a hard time pushing the fear out of my brain that there are always risks involved in surgeries like his. And my friend Lexi promised me just the other day that somehow I'll be able to handle it, and even be strong through it. And the angels who will have accompanied this sweet baby to earth will attend to me while I wait for him to recover. Only the way she told me was so much more eloquent and lovely and believable. And I do believe her, because she's already been through the wringer with her own special little spirit who came to her in a body affected by Down syndrome.

But I'm not there yet. Right now, I'm stuck in this place of worry and wondering about things I can't see yet. And I know that there are people in this world who are worried about things much more serious and difficult than this, but I can't shut off the worry. I can count my blessings, which are so plentiful, but when I'm done counting, I always go back to the worry. Maybe because it's become familiar territory, and we as humans tend to stick with the familiar. I suppose it's a great thing that I only have a few more weeks of this worrying to do before I'm thrust into the reality of it all. I'd better start getting things ready for this little boy.... Maybe that'll make it feel more real, and I can start moving into the part where I feel peace and comfort. It's worth a shot, right?