Sleep when the baby sleeps

TUESDAY, JULY 1, 2008

We are now a normal family with a newborn:  we exist on a 24-hour schedule.  Showering is optional.  We eat weird stuff at all hours.  The house is a disaster.  Laundry was a constant endeavor--until the washing machine broke down today.  All food can in some way look like baby poop.  Some times we panic, wondering how we are EVER going to function again, work again, think again.  We don't leave the house. We couldn't tell you what day of the week it is, or how many days we've had Clare home.  And of course, we sleep only when the baby sleeps--if then.  As Tim just said, "we look like we moved back in with our parents and never got jobs."

Clare is doing well.  She's eating like crazy.  I never had any idea babies made so much noise...and I don't mean the crying.  She chatters all the time, when she's awake, when she's half asleep, when she's asleep...it makes listening to the baby monitor downright funny.  (In fact, right now we're listening to her hiccuping.)  She appears to like it here at home.  She's also decided she likes us to pick her up and hold her.  Diaper changes make her crabby.  So far, though (and we know this won't always be the case), she isn't inconsolable.   

Clare went to her first pediatrician appointment yesterday morning.  We woke up less than an hour before it and didn't have time to shower, so we rolled in there looking like a couple of welfare cheats.  The baby looked good, though, and that's all that mattered.  I decided pediatricians' offices remind me too much of elementary schools, with their seasonal decorations and years-old copies of Highlights magazine laying around--you know, the ones where some other kid has already gone through and circled all the hidden pictures.  Can you find the frying pan?  Oh, Spoiler Kid already did--it's circled in the tree.  Can you find the spool of thread?  Yep, because Spoiler Kid got that one too, looking like a knot in the tree trunk.  The bicycle, the tea cup, and the pencil are all circled too.  Damn.  

Anyway, the pediatrician's appointment went just fine.  Clare is now five weeks old.  It seems so strange to think I'm still supposed to be pregnant for 3 1/2 more weeks.  When we think of it that way, it's hard to believe she's doing so well.  She was just a little over 2/3 of the way cooked.

On a more serious note, Tim and I are realizing how much we have to process from our five and a half weeks in the hospital.  We miss our nurses Peggy and Lisa.  We greatly appreciate Meg the nurse practitioner, who took such good care of us, and Sue, our last nurse who really took the time to explain things to us and reassure us.  But we are both pretty angry with a number of things:  the nurse practitioners whom we'd never even talked to, who walked up and made (what appeared to be) snap decisions about Clare--like when we were to room in with her.  We figured out early on that the staff was evaluating us all the time, and this was confirmed by check-off sheets and shift reports in Clare's file.  Afterward, it became clear to us that the evaluating was continuing during our rooming in period, and that none of us (Clare, Tim or I) passed muster on the first day of rooming in.  It made us feel like guinea pigs in somebody else's experiment and like we were being set up to fail.  Additionally, there were a couple other folks who were particularly discouraging or judgmental, and whose discouragement and judgment made things more difficult for us.  I won't say anything more than that, because in the end our daughter is healthy as a preemie can be, and we have her home, and all of us will recover.  But the whole experience smacked of a lack of control and sometimes even a lack of dignity.  Our powerlessness was profound. It's going to take us a while to process everything our little family has been through.  There was a lot that, at the time, we didn't have the energy or luxury to feel.  Now, we may not have the energy, but we have the time and luxury, so we find ourselves coming to terms with this incredibly big experience, fraught with fear and worry and helplessness and ignorance.  

I guess I need to cut myself some slack, too.  I tell myself that I don't have much right to feel overwhelmed by having Clare home, because it's not like I'm trying to recover from childbirth, and we brought home a baby whom we know well.  We've been trained by some incredible nurses.  We have some distinct advantages over the parents of term-babies who are booted out of the hospital within forty-eight hours of giving birth.  But then I consider the past six weeks and figure our fear and fatigue and concern are all warranted and justifiable.

But most of all, we are grateful that now our pretty, tiny little girl is asleep just ten steps from us and we can pick her up whenever she wants us to, and tell her we love her as often as we'd like, and dress her in her own little clothes.  Changing a diaper is not the worrisome task it was when we feared what we'd find--now we KNOW what we'll find by scent, and it isn't anything every other parent in the world is finding in their kid's diaper.  The funny thing is, Clare's been unaware of her predicament this whole time.  She has operated under the instinctive knowledge that everything is the way it's supposed to be and has had no fears for the future.  

Maybe she's the very smartest of us all.

We're home.

Well, we made it. All three of us in our little family are home now. Yesterday morning, our nurse Sue called us and told us that it was official, that she had received the discharge paperwork and would be down with her now-certified infant car seat when she was finished with a meeting. Man, what a breath of fresh air. Literally. Hospital air is so dry, I think anyone would be sick after an extended stay there, even if they weren't infirmed in the first place.

Speaking of sick, the extended stress and discomfort actually made Amanda ill--she's fighting some sort of virus and is feeling really bad. Of course we read up and asked about what happens if mama becomes sick and like most childcare science, answers vary from "wear a mask" to "stay away". One thing that has been proven is that mother's milk passes on antibodies to the baby, even newly-produced ones meant to fight a mother's actual illness. I've been trying to take over the bottle feeding so she can get rest and beat the virus.

My dad Curt and his friend Arlene did us a huge favor yesterday and got us some groceries so we don't have to leave the house. They even went so far as to go to Metropolitan Market to get us the blueberry juice we like, and even bought Amanda some ice cream. We can't say how much we deeply appreciate this!

Until this morning, Clare had been drinking less and more often. We think it was symptomatic of all of the chaos, the discharge, the car seat and the car ride, and the fact that she had never been to her own house before, with new smells, new (and far less) sounds, new bassinet and sleeping arrangements, the dog, kitties--a lot for a preemie mind to process. It's weird how basic her life is, and if she has to deal with new stimuli, she has to shift energy away from basic life stuff, like digestion, breathing, and eating. No offense, but she's more like a worm or a reptile than a human being. And our nurse Sue said that all of that would go away once she hit term. One time she was attending to a new mother in the mothers and newborns section of the hospital, the one where the term babies room in with their parents for a night then go home. Sue noticed that the woman was getting ready to nurse the baby and asked her if she neede any help, and the mother said no. Sue was a disbelieving and kind of hung around until she saw the baby sidle right up and start nursing. It dawned on her; the baby was a term baby, not a preemie. The kid didn't have to learn how to eat!

Amanda spent yesterday afternoon (even though she was sick) finishing readying the room for the baby. This meant writing down all of the gifts and all of the names of the people that gave them that have lived in the middle of the floor of the room since the end of May, sorting them between "now" for preemies and "later" for when she grows (which we still don't really believe will happen yet) and storing the later ones, plus all the sheets, diapers, and blankets that you all have given us. If you haven't received a thank you, don't feel put out; you will get one soon. The nursery is now a comforting place, with a rocking chair, the bassinet, the changing table/drawers, the armoire and the storage shelves, plus a cool think green rug in the middle, and a small, portable stereo CD player.

Being out of the hospital is strange now. We don't know her current vital signs, her temperature, and now have a more vague idea of how much she ate last and when she will need to feed again. She seems different too; less programmed to wake at 7:30 AM for doctor's rounds and every three hours afterwards, less interested in sleep, more interested in being cuddled and taking in her surroundings, sometimes staring at us or things for long periods of time.

We think she's becoming a real baby!

Knudson Household, population 3

We are home.  It's hard to believe, and we're both disoriented like any new parents arriving home with their firstborn, but she's here and we're here and all our pets are here and all our stuff and we don't have to go anywhere.  She will never be free of pet hair again.

Clare's introduction to Luke was especially sweet.  We set her on the living room floor in her carseat, then brought Luke in.  He didn't see her at first, so I pointed her out.  He went right over to her and licked her face.  That's what he does to little kids and babies, so this wasn't particularly surprising.  But when Moly the cat walked over to check Clare out, Luke put himself between her and the baby and shooed her away.  Those of you who know Luke know he doesn't demonstrate a lot of protective instincts.  Seeing him "protect" the baby from the cat was really sweet and we wouldn't want the dynamic any other way.

Otherwise, Luke isn't particularly interested in her.  Maybe he now has something to attach to the smell we've been bringing home the last month.  The cats are funny too.  Moly's nose is out of joint;  she won't go see Tim.  Frank, who we expected to be completely freaked out by Clare, isn't bothered at all and just acts happy as heck that we're home.  

In addition to a baby, I also brought a cold home from the hospital.  After all these weeks of anxiety, I guess a stressed, sleepless night in a cramped hospital room breathing dry, canned air was the last assault the old immune system could take.  I started feeling lousy yesterday afternoon.  Really I'm just grateful my health held out for this long--and Tim's too.  The nice thing is that though there is some risk of sharing the virus with the baby, she's also getting antibodies for this specific virus and white blood cells from me via breast milk.  

It's hard to imagine not going to the hospital tomorrow.  We're going to miss the nurses who took such good care of us and Clare.  That's about all we'll miss, though.  Tim and I put our wedding rings back on tonight, wearing them for the first time since Clare was born and taken to the NICU.  Our watches too.  Now we don't have to scrub down for three minutes every time we go to see her.  It's going to take a long time to get the ICN out of our heads.  Right now, I can hear the many different babies' monitors chiming in my head (and I could tell you what each individual tone means).  I can hear the neighbor baby's desperate cries.  I can hear the sound of the privacy curtains as they're pulled around a particular baby's station.  I can see the carpet. Most of all I can see Clare in her isolette or in her cradle, with her little gavage tube taped to her face and the wires from the monitor sensors snaking their way out between the snaps of her little sleeper.  I can see her bare right foot sticking out from her sleeper and her swaddling blankets, exposed so her PICC line can be seen at all times.  Most of all, I see barriers between us, her on one side and Tim and me on the other.  It's amazing to look at Clare now, wearing her own little clothes, completely free of wires and leads and tubes.  

Clare has spent a lot of today awake, her now-tracking eyes scanning her new environment. One of my favorite memories from today is when we laid her on the couch all swaddled in her blankets and both of us leaned over her and whispered to her.  She was completely still and quiet, her eyes traveling between us from one to the other and back again as if she was straining to listen to what we were whispering and trying her darnedest to understand.

Tim will no doubt blog tomorrow and share his perceptions with you.  He was going to tonight, but he got too tired.  He's now snoring in the bedroom.  I think I'll go join him.

Things are looking good

It's the middle of the night and I'm watching Tim sit in the rocker in our room at TG and feed Clare.  He's incredible with her, confident and motivated and unafraid.  He is so clearly crazy about her.  Now he's measuring out how much Clare consumed (over 50 mls!) so we can call our nurse and report it.  Her consumption has been so good that the nurse believes we'll be able to get out of here pretty quickly in the morning (how about now...?).  We will no doubt be renting a scale to keep track of her weight and how much she consumes via me.  We are indeed eager to get home and get settled in.

As we look to our move home, we have to keep a few things in mind.  Clare is still a preemie and won't be a term baby for four more weeks.  She is still easily overwhelmed and tired out. As much as we want to show her off and pass her around, we've been warned to keep her activities focused on building her relationship with us so that she feeds well, gains weight, and thrives.  We feel like we're well on our way:  Clare is opening her eyes to look at us more frequently than she did in the ICN, which indicates her readiness to interact with us. Nonetheless, she is going to do best if we shelter her for a few more weeks yet.  I want so much to say, "everyone who's wanted to meet her, hold her, and play with her, come on over!"--but we can't yet.  I just hope that you'll keep us in mind over the month of July and that, as we get closer to that due date of July 24, that you will still want to come meet her.  We will keep updating the blog to let you know when she will make her debut into society.  Until then, please know we appreciate you, your thoughts and prayers, and that we are very eager to share Clare with you just as soon as we can.

bubbles in the bathtub

Last night at 10 PM was Clare's first bath.  I guess this is a monumental event, because we were supposed to bring our camera and such.  My first bath picture has me buck-naked in full stride on the floor of my grandparents Jamieson's bathtub, my Grandpa's huge hairy carpenter arms holding me by the armpits.  We opted out of the camera experience, thinking that it might be more informative to pay attention, and it was.  We had to find out that we have to hold her by the neck with the non-dominant hand and wash her with the dominant one with shampoo, albeit not much and in tepid water.  

This is usually a difficult task, not well-loved by newborns, but Clare LOVED IT!  She had the best time, smiling and wiggling while the nurse did 90% of the work.  

Unfortunately, it got her all worked up.  She stayed awake for quite a while, and slept very restlessly, and because of that, we did too.  Additionally, we had feeding sessions that took a long time and usually ended with her not eating much.  On top of that were the phone call reports and visits from the nurse.  On the whole, I think that I slept about 3 1/2 hours total, and Amanda didn't sleep pretty much at all.  

We were frightened.  Not of the whole lack of sleep new parenting thing (c'mon, that's a given--you don't think we knew that was going to happen?), but of the low amounts of milk that Clare drank during the night.  She barely stayed above the minimum necessary for her to maintain her body weight, according to a formula that the nurse shared with me over the phone at 5:10 AM in a fifteen minute detailed conversation involving mathematical formulas that she expected me to explain to Amanda (good thing I wrote them down with a Sharpie pen on paper on a white countertop--oops!).  

In the morning we raised a little hell, with perhaps one of the best nurses we've had at this hospital.  We told her flat out, "what if she doesn't eat enough and she ends up back here with a feeding tube in her nose?!" and the nurse first replied that "if that happens, it happens" to which we freaked (of course).  I think I said "so I can look forward to sitting in the ER at 3 in the morning with a low temperature baby waiting to have a tube put in her nose when we already knew she wasn't eating enough?", to which our nurse replied that this wouldn't happen; if we go through this exercise and she isn't eating enough, she'll stay and get a tube, we'll go home and try in again in a couple of days.  Phew.  That felt better.

Our nurse went the extra mile though and explained how this was beneficial for us, plus that hospitals are becoming cesspools of difficult-to-treat infections, and the sooner we can get her out of here, the better.  The best part was not that she told us this; she could have given us a long and quick clinical explanation, and she didn't.  She sat and talked to us.  She asked us questions, and listened to our responses.  It is interesting that some of the skills that make the difference between a good teacher/administrator and one who really can reach out to students are the same skills that make a great nurse.  

Then, for some reason, Clare turned a corner on the feeding at 9:10 AM. She ate 38 mls then, rather quickly.  Then, two hours later, 48 mls.  Four hours later, 50 mls.  Three hours later, 52 mls.  Because of her above-average feedings and her stellar performance in the car seat (in which she slept for three hours and gave us some much-needed rest), she's pretty much sure to be released to go home tomorrow.

First Knudson Family Vacation, Day 2

We are staying an additional day at the hospital, rooming in with Clare and getting to know her and learning to master the little dominance games that even preemies play to get what they want. We've been working with a great nurse all morning who has taken the time to sit down with us and really explain what's going on with the demand feeding, including the philosophies and reasoning behind it.  Again we are reminded that the whole sucking, swallowing, breathing thing is a learned behavior for a preemie, whereas it is an instinct for a newborn.  A skill is a skill, and we find it interesting how much of the pedagogy we use every day with kids applies to Clare's acquisition of eating skills.  It makes us feel more comfortable with the whole process.  And I suppose we've come to terms now with the knowledge that we won't be bringing her home today after all.  It might be tomorrow, it might be this weekend...we don't know.  Potentially, we could be staying at the K Street Sheraton tomorrow and tomorrow night too.  It doesn't sound at all appealing...I want to be home with my pets and sleeping (or not sleeping) in my own bed.  But things could be worse.  We started this whole odyssey over five weeks ago by staying in the hospital, and we're ending it the same way.

We are exhausted and both look like we tumbled down several flights of stairs.  Tim got it perfectly when he said this feels like a bad air travel experience, like our flight was cancelled and we got stuck spending the night on the floor of the Omaha International Airport.

A difficult night

The night has been difficult.  We've been given strict minimums of how much Clare must be consuming and at what intervals.  She is supposed to wake up herself and let us know she's hungry, or else we have to wake her up within four hours to feed her.  She hasn't consumed nearly what she was supposed to have tonight.  Now they tell us she actually lost weight yesterday, her first day "on demand."  A second day of lost weight is bad, and the gavage tube is threatening to return.  The nurse tells us we "have the right to ask to stay another night" rooming in with her again to see if her feeding improves.  I guess we could ask to be discharged today, but we'd need to rent a scale to keep weighing her before and after feedings.  We are now convinced beyond a doubt that this step was rushed.  Why, we don't know.  But now we are exhausted and angry.  I don't think I can sleep here another night.  Neither Tim nor I slept at all.  But we don't want to take her home too early, either.  If we can't sleep here because we're worried about whether she's going to wake up by such-and-such a time, and whether she'll consume such-and-such an amount, we're not going to sleep any better at home, worried that she'll have to be readmitted.  I'm really angry at all the rushing around we were forced to do yesterday that may have been for nothing.  I cancelled a really important meeting, Tim left his AP conference, we stressed out all day, and why?  Because someone gambled that she was ready when there wasn't necessarily proof that she was?

She's WHAT?! Coming Home??

Yes, it's true.  As I arrived at the hospital this morning, I found a voicemail message from Lisa, one of our favorite nurses, telling me that Clare had done so well with her on-demand feeding that the nurse practitioners were hoping Tim and I could "room in" at the hospital tonight (to-NIGHT?! I thought) with the plan to send her home (send her HOME?! I thought) tomorrow (ok, so you know what I thought next).

This was amazing news!  But we weren't at all expecting it.  And this wasn't an ideal day.  You see, we didn't have a number of the things we needed for Clare--you know, those things like diapers, a diaper genie, bottles.  And her room is still a mad disaster.  And the car seat was supposed to arrive via Fed Ex TODAY.  Oh, and then there was the important meeting I had at 10am at work, so I could begin learning the new athletic director part of my job. How could I miss that?  But most inconvenient of all, Tim had ridden the bus up to his AP workshop in Bellevue and wasn't due back to the Tacoma transit station until after 5pm.  Oh my...oh dear...where to begin?  I called Mark and he would reschedule our meeting.  I'm so grateful for his understanding.  I drove up to Bellevue and got Tim.  He'd been busily trying to reach his administrators to make sure that the district wouldn't expect us to pay for the part of his AP workshop that he'd be missing.  We then stopped at that awful big-box bastion of American consumerism, Babies R Us, to pick up those essentials.  Then we went home to wait for the Fed Ex guy...who didn't show up, because the seat didn't arrive in Portland until 4:41pm.  

So now Tim and I sit on the fold-out bed in one of the rooming-in rooms at TG, watching the Comedy Channel, with a little swaddled baby between us.  In less than an hour, we'll take her back to the ICN for her first bath.  We figure this is our first family vacation, and probably the only "trip" we'll take this summer.  I mean, really, this place has everything a hotel has.  And the bill goes to Premera-Blue Cross.

Tim and I are stupified, freaked out, exhausted with anticipation, filled with wonder, and scared to death.  Did I mention freaked out?

Day 29-June 24, 2008

The little girl is growing up! She has been placed on "demand feeding" status, which means that she will have to cry to be fed by bottle or nursing, rather than being fed every three hours automatically by nursing, bottle, or gavage. She isn't being taken off of food cold turkey, of course, because if she doesn't caterwall within a four hour period, she will still have to be gavaged. At least she will start to learn the connection between being hungry, crying, and having someone feed her (yes, term babies come out doing that, but preemies actually have to learn it). She has drank full bottles (35 ml or more) in the middle of the night before, so she is capable of doing it.
The staff is getting kind of anxious that we get all of our care "benchmarks" accomplished this week, like watching a video on how to do infant CPR and getting our car seat (still coming via FedEx from Babies 'r' Us in Pennsylvania--due tomorrow) certified and getting her SapO2 levels checked while she is strapped into it. We still have to spend the night in the hospital in a special room for parents to experience the first night or two with their babies who come out of ICN, to make sure they are feeding okay, but are still on monitors and have nurses to call if the parents get into a jam or something. We also have to find her a pediatrician, which the staff at the hospital asks if we have done yet (and the pediatrician office asks if she has been discharged yet--nice chicken or egg scenario). All of this while Amanda has gone back to work at Fife HS partial days and I have an AP workshop at Interlake HS somewhere in the middle of a bunch of '60s housing developments in the surroundings of Bellevue until Friday. The timing is almost as good as Clare's birth, I say with great (but loving) sarcasm.
She's still coming along with the feeding thing, though. I fed her the majority of a bottle tonight after I got to Tacoma from Bellevue. She still has to ask for her milk and take it all at one feeding (without falling asleep in the middle, or at least waking up and asking for more), and do it in consecutive feedings for a certain amount of time (I think for a couple of days) before we can even consider our "vacation" at the hospital and her discharge to her home with us. I think she will be there through the weekend at least before all of these steps can be taken care of, and I think the hospital is rushing us just a touch. I'd surely avoid a terrifying day journey to Bellevue's suburban wastelands if my baby were going to be ready to come home within the next couple of days, but I think she has some skills to work on a bit yet before she's ready. Honestly, I'm more worried about her being able to do it than I am at having her here at home, away from her cute but loud neighbor and all of the goings-on of the Intermediate Care Nursery at Tacoma General.

Sunday, June 22--Day 27

Today was pretty unremarkable, which is not at all a bad thing.  Clare was fairly fussy again and tonight managed to wheedle 15 mls out of her Avent bottle before passing out.  After we put her back in her cradle, she started to cry (again), so Tim picked her up, all swaddled, and held her like a big warm burrito.  This put her immediately at ease, so we think she's starting to figure a few things out about training us to her liking.

We're becoming the veterans in our ICN neighborhood.  We watch the babies and parents come and go.  We have a new neighbor to the north of us, a mom with a preemie a little larger than Clare when she was born.  The mom is still in shock and fearful.  I recognize that shell-shocked and frantic look!  Today the nurses had to do a simple procedure on the baby, who began crying; hearing this, the mom started crying too.  Tim and I wanted to tell her it was okay, that she'd get used to her baby crying and that the painful procedures like that one are infrequent and that the babies forget their discomfort easily.  I don't know if we ever get truly used to hearing our babies in pain, even briefly, which is why Tim and I left today when it came time for Clare's dermaplast tape to be taken off her face and replaced.

We don't resent the babies and parents whose stays in the ICN are days, rather than weeks. Our little girl is all ours, and we wouldn't trade a thing about her even if it meant going home earlier.  Plus, while there may be ten or more short-term babies to each Clare, there are a number of Clares to each baby who is stuck at the hospital for months rather than weeks.  We are still very hopeful that (here on the eve of her 4-week birthday) Clare will be among those babies whose stay is measured only in weeks.  

Take the baby next to us, for example.  She has been in the hospital for many months and has a number of issues that require frequent and lengthy care by one or more nurses.  Unlike Clare and most of the rest of the ICN babies, this one's care does cause her considerable discomfort and/or pain and she spends a good deal of her time crying in misery because of it.  This baby causes me at times a considerable amount of grief, and not just because we have to listen to the Kenny Loggins CD ad nauseum. Hearing her cry out in pain is awful.  I wouldn't wish it on anyone.  But I must confess that sometimes I get incredibly frustrated by it.  When I'm trying to concentrate on Clare, on nursing her or (my favorite activity in the whole world) pumping, the baby's crying is jarring and upsetting.  We've gotten so used to the MRSA quarantine that it doesn't phase us any more, but the crying is impossible to ignore.  Again, I can only commend the nurses who provide her care.

My other guilty admission is that sometimes I resent the time this other baby takes away from Clare.  We know the nurses appreciate Tim and me because we are so self-sufficient with Clare and this frees them up to take care of the baby next door.  Regardless, however, there are still a few things that we can't do because neither of us has a nursing degree, and this includes gavaging Clare's feeds.  Oftentimes we lose our nurse to our neighbor's quarantine area, and not for short amounts of time.  The MRSA issue requires anyone dealing with the baby to don special protective gowns and gloves, and the baby's many care procedures require time-intensive efforts on the part of, as I said earlier, one or more nurses.  As we try to get Clare to bottle-feed, we often find ourselves waiting a long time before anyone can gavage whatever Clare can't consume via mouth.  This gets her feeding schedule off, so at the next care time when she's checked to see how much she has digested (nurses use the gavage tube to suck out Clare's stomach contents to see and measure, literally, what's left...and then they push it back in!), it appears she hasn't digested much of the previous feeding.  Tonight we changed Clare's diaper at 5pm and spent the next maybe half hour working on the bottle.  We then had to wait until after 6pm before anyone was available to gavage the rest.  The milk had been by that time sitting out for over an hour, and this caused me some anxiety.  Now please know, I feel awful for feeling this way. It's not the neighbor baby's fault, and it's not our nurse's fault, either.  I adore Clare's nurses and I know they are frustrated by the situation as well and don't like putting Clare's less-dire needs below those of the neighbor baby.  They appreciate us and feel for us and we share in this mutual frustration.  (Incidentally, each nurse in the ICN is responsible for three babies, except for ours, who is responsible for just Clare and our neighbor.)  I know I should just be grateful that my baby is healthy and will be coming home someday soon.  But I guess the new parent in me wants to protect my baby's interest at all costs.  

So there's my rambling confession.  

In other news, Tim and I continue to make small steps back toward normalcy.  Last night I went for my first post-delivery run;  it was just a mile, but it felt great and I'm not too sore today, and I know miles 2, 3, 4, and beyond aren't too far away.  Last night Tim and I also walked up to the grocery store, something we used to do regularly but haven't done since before my water broke May 20. We've begun our thank you cards and are starting to figure out how to organize drawers in Clare's room.  This is significant because we are now looking to Clare's room hopefully and with eager anticipation, not avoiding it because our baby isn't there and it makes us sad. Tomorrow I'll head into work after her 8am care, stupid hated pump in tow, and this week Tim has an AP conference in Bellevue Tuesday through Friday.  And this is a week of several milestones:  Clare will be four weeks old tomorrow.  On Wednesday, she'll reach 36 weeks' gestation.  And on Friday, she'll be one month old.  We look toward the near future, when she masters the skill of eating and can come home and be our full-time, real baby, all ours to love and hold and protect and teach and cherish.

Getting closer...

She was a bit fussy today, a little bit prone to crying and not as easily consolable as she usually is. Clare's hemacrit (her red blood cell count) was a bit low, so she has been getting iron supplements in her feedings, and iron will sometimes cause constipation. According to her diapers today, that thesis would be supported, but her exams revealed a soft tummy and definate sounds from her digestive system, so we think she is just a little stuffed up and a bit cranky about it.

Both Amanda and I had luck with bottle feeding her today. Amanda was able to get 15 ml of milk in her at her 11 AM care, and I was able to get 16 ml in her at 5 PM, both of us using the Avent bottle. That's good, as it is getting closer to getting her home. All she really has to do is ask for (through her rooting behaviors and awakeness) and take all 42 ml from either breast or bottle and she can come home. We're hoping she continues this positive trend.

She weighed in at 5 pounds, 6.8 ounces this evening. Not quite the "ounce a day" rule, but pretty close.

We bought a nice wicker rocking chair at Pier 1 this evening to rock her in when she comes home. She's getting closer.

DO NOT BUY THIS CD FOR US!!!!

I was only kidding when I said the insufferable lullaby CD was by Kenny Loggins.  But it actually is.  If you would like a taste of our daily punishment, you can check out the CD (which Tim just found) at www.amazon.com/Return-Pooh-Corner-Kenny-Loggins/dp/B0000029FW/ref=pd_bbs_sr_3?ie=UTF8&s=music&qid=121402619&sr=8-3,   or look it up on Amazon:  Kenny Loggins, Return to Pooh Corner.

And no, we don't want it.  We just want to share our misery.

Think about listening to it.  Over and over and over again.  For 3 to 5 to sometimes 10 hours at a time.  With different babies crying, all around you.

Not pretty, is it.

Friday, June 20--Day 25

Another good day with Clare.  She showed promising development in her sucking skills this morning, which gave us a sense of accomplishment.  Consistently we arrive at 8am to find her already wide awake or easily woken up, and this is when she stays awake the longest and is most interested in eating and in interacting with her adoring parents, who hover over her plastic cradle and make all sorts of dumb comments to her.  When we did her care at 5pm, she was reluctant to wake up but nonetheless managed to get a good grip on her gavage tube and yank it out of her nose several centimeters three separate times, requiring the nurse to retape it to her face twice. As I've no doubt mentioned before, we figure the only toys we'll ever need to get her are wires and cords and things that she can put in and pull out of her nose.  We'll do all our Christmas shopping at Home Depot and medical supply stores.

Several well-meaning staff at the ICN have asked us, "so, did you guys get a chance to go out and enjoy the weather?"  I don't know about Tim, but the very notion seems so foreign that I have no response prepared;  they might as well ask me, "so, did you guys ever sell Dutch spoons out of your basement crawl space?"  Me:  "um...", blink, blink, blank look.  We did decide to take the evening off, however, and spent the time mowing the lawn, picking up the kitchen, and getting the dining room table cleaned off enough so that we can start writing out our long-overdue thank you cards.  It was nice to have enough energy to do this.

Clare weighed 5 lbs, 6 oz tonight, consistently meeting her goal of gaining an ounce a day.  If she manages to keep her body temperature consistent for a few days--she's still requiring a number of layers to stay warm--then we get to bathe her, hopefully early next week.

Tim has remarked that he's developing Stockholm Syndrome.  He's afraid he's starting to like the endlessly looping Kenny Loggins-"Somewhere Out There"-"Rainbow Connection"-"All the Pretty Little Ponies"-modern lullaby CD that plays incessantly for the neighbor baby.  Maybe once Clare comes home, a bunch of us can plan an Intervention.

What cheeks will do

Looking at yesterday's photos, I wondered aloud, "when did Clare become such a pinhead?"  Then I realized what was going on:  she has cheeks now!  Her fat little cheeks make her head look smaller.  I'm told the two catch up with one another eventually.  

Oh yeah,

anyone have any idea who mowed our lawn last Saturday?  I thought it was our neighbor Scott, but his wife Amy denied that.  The neighborhood watcher, our neighbor Norm, said it was some young guy who pulled his mower from a pickup truck, mowed it, and left.  

We posted a thank you sign that I quickly made out of a "Babies 'r' Us" carton and a piece of lattice for a picket.  I hope you saw it.

A couple more things: Thursday, June 19--Day 24

To add to what Tim wrote below:  today was the first day Clare REALLY looked at both Tim and me for an extended period of time, as we both peered into her Serv-N-Saver cradle this morning. It was the first time she could just look up and see us without the interference of the plexiglas in her isolette.  When one of us would speak, her eyes would move to whomever was talking.  It was a real affirmation of our role as parents and caretakers and protectors, to have her recognize us and be interested in us.  

She weighed in at 5 lbs, 5 oz this afternoon.  We're still waiting for her to get the eating thing down.  The whole suck, swallow, breathe thing is tough for many preemies.  Given her parents' issues with coordination, she might be staying in the ICN for some time yet!

We got some awesome photos of her today.  Tim should be loading them onto the photobucket site tonight, so be sure to check them out:  http://photobucket.com/ClareFoxKnudson.

Just like a real baby!

As Amanda stated in the previous post, Clare is in her little cradle and has no IV tubes in her any more. What a joyous day!

To get here, she had to maintain her body temperature well enough for long enough to get here, and by last night, she did it. She's still not permanently out of the woods--if she keeps a low temperature for long enough, she won't digest her milk very well, and it will be back in the isolette/terrarium with her. It will be wonderful to just come in and grab her out of her cradle and hold her without relocating 7 tubes and wires.

She's found a peculiar (yet familiar to most parents) way to let us know she needs changing. Wow. She doesn't even need to scream or even fuss. Just sitting down next to her cradle and taking a whiff is enough.

In this shot you can see her gavage tube dermaplasted to the side of her face. She likes to grab it and yank, so as much of it is taped over as possible. The gavage tube is symbolic of her last major hurdle: she has to be able to ask for and take full feeds without complications. We work with her twice a day on this, figuring that any more will needlessly wear her out and make a next attempt that much harder, since she will be more tired.

Amanda and I also went to work today after her 8 AM care. I had a workshop for a new Civics curriculum in the morning and had to get checked out of PHS formally for the year. Amanda is going to start her limited schedule back at Fife High School, starting with a couple of hours and working her way up. She wants to save some of her sick leave and vacation time for when Clare actually comes home and we can spend full quality time with her.

We can wait to get her home from the context that we want to have her here and keep her, but in the same token, we want her here as soon as possible. As anyone with a preemie or chronically ill relative knows, living at TG is tolerable, but not the greatest thing in the world.

New & Improved! Now With 20% More Baby!

It's been a big day for Clare, which means it's been a big day for us.  When I showed up at 5pm to do her care, Peggy told me that Clare's PICC line had already been removed.  My hands were in the isolette, otherwise I would have hugged her.  For the first time, Clare gets to put both feet in her pajamas, and she can wear a sock on each foot.  One step closer to being a real baby!

The other Big Event tonight was the arrival of Clare's cradle.  Peggy was pushing it in as we were getting ready to leave.  Clare will be moved into it tonight during her 11pm care.  No more terrarium for our baby girl!  We still have to monitor her temperature very closely.  But we're cautiously optimistic about getting to change her diapers and clothes in the Outside World. This is particularly helpful because she's getting fussier about being changed and having her clothes taken off, so she's become a bit of a handful to diaper through two isolette portals. 

We have been told many times that having a preemie means two steps forward, one step back...so we are, as I said above, cautiously optimistic.  Clare still needs to learn to nurse or take a bottle, so her gavage tube will remain in for some time.  She also needs to get to a point where she is "fed on demand," meaning that she recognizes her own hunger signals, cries to be fed, and nurses until she's full.  Even if she woke up tomorrow and could suck down her 42 mls of milk from a bottle, we need to be sure she continues to put on weight, etc., before she gets to come home.  Plus, we just ordered her car seat on line today--so she can't come home before it arrives.  It would not shock us at all to arrive tomorrow morning and learn more bad news.  It's how we've been conditioned.  But we are looking toward a more immediate future, with our little girl home with us.

Speaking of putting on weight, she's now up to 5 lbs 3 or 4 oz.!  That's a whole lb bigger than when she was born, and over a lb since her weight dropped below 4 lbs after her birth.  That's 20% more baby than three weeks ago!

Little steps

More little steps today:  Clare's IV line was taken out of her PICC, which was then hep-locked and will hopefully (if all goes well) be removed from her within the next day or so.  Can we really hope that it will happen?  Since we've learned to take things as they come, we won't get too excited until the event actually happens.  

The removal of her IV line means that we can now take her in and out of her isolette easily. Her only encumbrances are the three lines stuck on her chest and abdomen that track her respiration and heartrate.  And these can be unplugged briefly, so for a few moments, we have a free baby with just a little hardware still attached.  

We need to debunk what can surely only be an urban legend:  that babies who consume only breast milk produce waste matter that doesn't smell.  WRONG!!!  When we changed her at 8am, she had a full diaper, but it didn't smell too bad.  I held her as she was gavaged this morning (with 42 mls!);  she was just finishing up when Tim and I caught wind of the most pungent odor of sulfur I swear I've ever smelled.  Lord almighty!  So we changed her diaper again, and I wondered aloud 1) whether I'd ever get used to such things, and 2) how much worse it'll be when she starts eating real food.  I am so very thankful that Tim is awesome with the diapering.  I'm so fortunate that he takes all this parenting business with the utmost seriousness, and I'm not stuck with someone who is careless or doesn't do things as well as I do. Heck, he does them way better.  (For the record, I did help change the diaper.)

Tim just noted that Clare acted like a real baby today:  she was fussy when we got there because she had a full diaper...she cried during her care because she doesn't like to be undressed and dressed again...she calmed down when we held her...she loaded the diaper after she ate.  We know that some day we'll look back nostalgically to the time when she'd sleep through a poopy diaper.

Clare is 35 weeks' gestation today.  Getting closer to being a term baby all the time.

day 22-evening-June 17, 2008

My goodness she is sleepy. It seems like all the time. We get about 20 minutes to a half hour of attempts to try to feed her before the nurse warns us to not wear her out or she will be even less responsive next time. She's up to 36 ml of milk now, and we can usually get anywhere between 2 to 10 in her before she goes ka-thunk on us. I (daddy, Tim) got 10 in her today before she had to be gavaged, but with no residuals (anything left in her stomach waiting to be digested)(if that's something to brag about, I guess). She's got loads in her diapers, she's lost her umbilical cord stump, she's practically a newborn baby.

The best news is that she is growing. Like crazy. She was 42 cm at birth and is now 47 cm, and is up over five pounds. Her head circumference has grown as well. Her isolette temperature is now 26.0 degrees C, which is the lowest they allow it. I think she has to be able to maintain a reasonable body temperature (at least 36.5 degrees) consistantly for the next couple of days before she can be in a cradle like the other newborns.

If everything goes as planned, and we don't run into any complications like we did a couple of weeks ago, she will go off her IV tomorrow and her PICC line will be heparin-locked for 24 hours, then removed. That means she will simply be in a crib and on a monitor, fed entirely by milk. It will be nice to simply remove her from a crib without having to relocate IV lines and unplug heart and respiration monitors.

We've not been doing "kangaroo care" on her. In particular, that was difficult to do, even though it was entirely recommended, tubes and wires and all. It just got to be such a hassle. At first we were limited because of her photo therapy to break up her bilirubin, and later it was difficult because of her three IV lines (electrolytes, lipids, and antibiotics) and four lead wires (SapO2, heart and respiration) to get her chest-to-chest with her. Compound that with a busy unit and someone checking every ten minutes, and it just got difficult. We're looking forward to doing that at home during the summer anyways.

We don't know when she will be able to come home. We know there are certain criteria that health-wise she has to meet, like be able to take an entire meal in a reasonable amount of time without a gavage tube, and sit in a car seat for an hour without going below 90 percent blood oxygen saturation. We also have to spend two nights in the hospital with her, on monitors and with nursing staff nearby (there are two rooms off of the lobby of the ICN). Besides planning the two nights, the health stuff may be a ways out.

Good. That'll give us enough time to make up our minds about a car seat.

We'd sure love to have her home though.

Still have to write and send thank you cards before we wash sheets, blankets, and sleepsacks for her too.

It was a nice day today

Little Miss Clare (what the nurses in the ICN call her) is certainly sleepy right now. Her evening nurse Asha explained that when a baby's bilirubin is high, they tire out easily and sleep a lot (and Clare is pretty orange still). Since Clare just went on feeds as of last Wednesday, it will take her a while to process those dead red blood cells (the bilirubin). Fortunately, she is now doing that regularly, as she did that in three diaper changes today, and she will begin to be more awake for longer, and take to feeding better. Right now, she can't even come close to staying awake through a feeding, and most of what she eats (now 30 ml--she started at 6 ml last Wednesday) gets feed to her through a gavage tube, although it isn't for want of trying--we try to bottle feed her every time, get a few good pulls off of it, and then she loses interest and goes to sleep. When she does start to stay awake for her feedings, she will be all the closer to coming home from TG. She'll have to maintain her body temp better too, and she still struggles with that a bit. We have her in a onesie, a sleeper, swaddled in those awesome flannel blankets, and covered with a fleece blanket just to keep her a little under a normal temp of 37 degrees C, and that's with her isolette at 26.5 degrees C. She won't be able to go to an open air cradle until she can maintain 37 degrees with her isolette at 26.0 C. The staff tried to lower her on Friday to that, but by Saturday, she had a temp of 36.4, 36.3, and 35.8 consecutively taken @ 2 PM. We were sufficiently freaked, as one might imagine.
She's making, dare I say for sounding cliche, baby steps, but she's getting closer to coming home. Various nurses have warned us to make sure we get a car seat and get her room ready, but I think we know that it's going to be a little while.
Have you seen how many car seats there are out there? My goodness! You could pretty much spend to the sky's limit on one and for what? Six months? Of course, with a preemie, we might be using ours well into January until she starts to make headway on the gap between her gestational and real age.

A little reassurance

Once again, Clare woke up at her 8am care time, couldn't finish her bottle (so the rest was gavaged), but stayed wide awake once we put her back in her isolette.  Since she is like any other newborn and scratches herself, particularly her eyelids, Tim and I put two baby socks on her hands this morning and enjoyed a little laugh at her expense.  

Dr. Mulligan checked in with us this morning about Clare's accidental second cranial ultrasound (the one that picked up level 1 bleeding).  He was very reassuring and clearly isn't concerned about it, which allowed us to exhale completely for the first time in several days.

Clare is three weeks old today.

Sunday, June 15--Day 20

Sundays are generally quiet around the ICN, which is nice.  Aside from a pair of grandparents (not much older than us), we had the run of the place most of the day.

Clare continues to get tired out and can't finish her bottle.  Our evening nurse, Peggy, whom we adore, told us this might happen:  she'd feed well for a couple days, then act as if she's forgotten what to do.  Even the nursing seems to have lost its point;  she spends her time very quietly wide-eyed and examining the world she can see (which is within about six inches).  Clare is packing on the weight steadily, though, and developing the chubby cheeks of a term baby, so it's not like she's given up all endeavors.  

A small victory today:  she's no longer getting lipids (fats) through her PICC line, so that means one less attachment we have to manage when we change her or pick her up.  She's consuming enough now that she's getting all the Essential Fatty Acids she needs.  Her Baby Gatorade has been cut way down too, and hopefully will be discontinued tomorrow.  When that happens, she'll be free from all lines except the cords to her heart and respiration rate monitors, and these can be easily unplugged and replugged-in for convenience.  She will keep her PICC line in for twenty-four to forty-eight hours once her IVs have ended, and then that will be removed. That will be a day worth celebrating.

Tim just asked me if it had really been twenty days since Clare had been born.  Yes--and tomorrow she'll be three weeks old.  It doesn't seem like that long, he said.  Rather, it's felt "like one continuous day with some breaks for sleep."  That pretty much sums it up.

early-June 15, 2008

Baby is still really tired, and has been for a couple of days now. It has taken her a lot of energy over the past few days to bottle and breast feed, and it sort of caught up with her yesterday. As you read in Amanda's previous post, we let her sleep pretty much the rest of Saturday, with feedings coming from the gavage tube rather than us. This morning she was awake when we got here, but was only able to muster 10 ml of milk, so we asked the nurse to gavage the rest. We asked everyone who was to visit her today to stay away, just to get her to conserve her energy. As she increases her feeds, she's really turned her energy towards digestion and away from awareness. She wears out very quickly. Her temp was normal today-37.1 C, and her weight was 2678 grams after her first feeding attempt. She's a five pounder now, but still has a lot of other things she needs to be able to do.

Saturday, June 14, 2008--Day 19

Today was an OK day for Clare, but Tim and I struggled with our emotional and physical fatigue.  I guess that even with our many advantages--living so close to the hospital, having jobs where our supervisors are understanding and supportive, and enjoying a stable and loving marriage--even our plentiful resources can get depleted. 

Clare is tolerating her feeds very well, digesting the increasing amounts quickly and eliminating the waste normally.  We can tell it's taking a lot of her energy, though.  Her isolette was reduced to 26 degrees C today (part of her graduation to a cradle depends on her maintaining her body temperature in a 26 degree environment) and at 2pm we discovered her body temperature had dropped, despite being in a sleeper and hat and swaddled in two blankets. This is her little body's way of saying, "whoa!  I can only do so many things at once here."  So we wrapped her in a onesie, then all the other layers, and her isolette temperature was raised to 26.5 C.  This means she'll stay in her isolette longer, but we're OK with that.  To avoid tiring her out further, we decided to have her fed via her gavage line until 8am tomorrow. She's most awake and energetic then, and has had the best luck with breast- and bottle-feeding then.  Most of all, we want Clare to rest as much as she needs to so she can get stronger.  We both want so badly for her to be strong enough so we can pick her up and carry her around or have her sleep in our arms, but she still is technically in gestation and we need to give her the developmental time she should have had in the womb.

A word about breastfeeding.  I'm one of those women who has always been, and remains, pretty squeamish about the whole idea.  I had planned to breastfeed anyway, just because it's what's best for babies, blah blah blah.  Here's the clincher, though:  the mother of a premature infant makes milk in exactly the right combination of fats, proteins, etc. that her baby needs at that point in his/her development.  So whatever my body was making when she was a week old and between 32 and 33 weeks' gestation is exactly what her little body needed at that point in her development.  What I make right now is exactly what a preemie at 34 weeks, 3 days needs. Plus, she gets whatever antibodies I have, so that improves her immune system and decreases her risk of catching stuff.  That's why it's all the sadder when other moms of preemies in the ICN stop (or never start) breastfeeding.  So, I'm still squeamish about the whole issue, but my concern for my little girl makes this a frank and discussable issue.  Still not joining the La Leche League, though.

Clare weighed in at 5 lbs tonight! 

We love this little girl so much.  All of you who told us we'd fall in love with her--you were absolutely right.

Did I mention...?

...that the CD also includes a version of "Rainbow Connection"?  Anyone else remember Kermit the Frog singing that on The Muppet Show?

A few of the things I'm sick of

I'm sick of hearing other people's babies cry inconsolably (I don't know how the nurses do it).

I'm sick of trying to relax while other people's babies cry inconsolably.

I'm sick of being squeezed out of our little space because other people's babies' stuff takes up more room.

I'm sick of worrying about MRSA.

I'm especially sick of hearing the same CD over and over and over again, featuring "Somewhere Out There" from Disney's An American Tail.  No wonder Clare keeps trying to pull her ears off.

Friday, June 13--Day 18

Today, in order:

POSITIVE:  Clare is awake and eager to begin feeding at 8 and 11am.  We get to awkwardly try and breastfeed.  She does better than me.  

NEGATIVE:  I still couldn't tell you what "letdown" feels like and I'm still waiting to feel this grand oxytocin euphoria that breastfeeding supposedly causes.  Maybe the La Leche League are a bunch of liars.  Maybe they're a front for the Cult of John the Baptist and Mary Magdalene.

POSITIVE:  Clare is staying awake longer and starting to look back and forth between our faces.  We get the feeling she's starting to recognize us and like us.

NEGATIVE:  The baby next to us developed a MRSA infection and is under quarantine.  No, this is a different baby from the first baby with MRSA.  This one also has teen parents, but they seem pretty responsible and mature.  Their baby has a number of significant health issues, and so is vulnerable to opportunistic infections like MRSA.  I'm trying not to panic.

POSITIVE:  No suppositories were needed.  Clare blew out a total of five diapers before we were done changing her.  What a mess!  But we were thrilled that appears to be in good working order.

NEGATIVE:  Clare has to get a gavage tube inserted (installed?).  She cries, struggles, and lets out little screams.  It's agony to listen to.

POSITIVE:  I get to hold her and feed her right after the gavage tube is inserted, and she calms down quickly and is able to nurse.  

NEGATIVE:  When we return at 5pm, the place is packed.  A set of twins has arrived on the other side of Clare, apparently  because their mother lost a lot of blood in their delivery and there wasn't another place to put the babies while she was recovering.  A whole pack of people has assembled to the right of Clare and an empty cradle is in the way;  I have to ask to have it moved so I can access the side of Clare's isolette.  Between that and the curtained, quarantined baby on the other side, we don't have a lot of room in which to move.  What appears to be happening is the Descent of Family Members After a Baby Is Born, only rather than taking place in a private (albeit small) mother and baby post- delivery room, it's happening in our little world of vulnerable babies and high anxiety.  I resent their gaiety and obliviousness.  Tim and I both feel for the mother, who we hear had to get a sizable blood transfusion, and who no doubt just wants to be with her babies and have some peace, and who no doubt has neither.

POSITIVE:  Clare weighs in tonight at 4 lbs, 15 oz.  She's getting to be the size of a real baby!

NEGATIVE:  We hear from the nurse practitioner that a mixup has led to a repeat cranial ultrasound, which revealed very small and minor sites of bleeding.  We are told not to worry, and that they may even be the product of an over-scrupulous ultrasound reader-- there is some subjectivity in the reading of such things.  It really is nothing, we're told, but because it's been noted in her chart, they wanted to let us know.  We try not to panic.

POSITIVE:  It's probably nothing.  

NEGATIVE:  The nurse practitioner tells us we'll have another cranial ultrasound done when she's 28 or 29 days old, or before discharge--whichever comes first.  "Though I don't think you'll be heading home before 28 days," she says.  We try not to be crestfallen.

It'll be great when all them tubes is out of her!

We are learning a new dance. It's called "manage to put the baby in the other parent's lap without getting tangled in wires and tubes". Neither of us dance well.



We've been worried about the lack of a bowel movement. Until today. Amanda made me promise not to be too graphic about my description. Let me just throw a couple of things out: Slurpee machines. Odwalla Superfood. "We brought in a gusher!!!". There.



She's been so wonderful about eating. Nevertheless, the nurse today put a gavage tube through her sinuses into her tummy. The fear is that as her feeds increase, the energy expended to get the food in her will increase to the point where she will either have to stay awake longer (and expend more energy eating) or eat faster (which happens sometimes, but not always). I wouldn't want to be the night shift nurse trying to get her to wake up at 2 AM so she will finish her bottle. Still, when she feeds, she usually eats quickly.



She's such a wonderful little girl.


Anyone who knows me well knows about my triskadekaphobia, or more accurately, my paraskevidekatriaphobia, that is, my fear of the number 13, especially days that fall on Friday the 13th. Even though I had my leg crushed between two cars that day and later that year got into a car accident on another one, I decided that I'm a man now and that I have to put away childish fears, so I don't fear going to work any more on that day and I even thought about the fact that I formally received my masters degree on Friday, June 13, 2003, so nothing bad will necessarily happen on that day, right?

Right before we left, a nurse practitioner met with us and discussed first some confusion about a cranial ultrasound done on June 2 and June 9. TG usually orders one on every infant by S.O.P., and for some reason, did Clare twice, thinking that the earlier one had not been done. On the second one, the radiologist noted that Clare has some what is called "grade one" cranial bleeding. The ARNP explained that grade one is the mildest, that it usually never ends up causing any developmental disabilities, and usually shows up within 7 days of birth (hence the date of the first one). Why it showed up only on the second and not on the first was a mystery to her, but she wanted us to know that the data was in the chart and those results had been noted.

So, "grade one" cranial bleeding. After hearing about the PDA, the VSA, and the blood in her stool, I guess I'll keep my little obsessive phobias.

I'm scared. But I'm also determined. I want this little girl to have a good life.

When we arrived at 8 this morning, we found an open-eyed and wiggly little girl waiting for us in her isolette.  Clare was definitely hungry and interested in eating, although she fell asleep before her bottle was finished and we had to wake her up.  These little bursts of energy, followed by intense sleep, remind us that she is a preemie and that even the smallest tasks take a lot of energy for her.

Dr. Mulligan is increasing her feeds twice a day now.  Given how easily she tires out, we are anticipating having her gavage tube return today so that she can be sure to get her full feeding amounts without sapping all her energy.  At the same time she's working on eating and digesting, she's also working on regulating her body temperature so she can move out of the isolette and into a cradle or crib.  That's a lot to do at once.

Clare appeared to be looking at both Tim and me this morning when we took her out of her terrarium.  This is particularly encouraging because we've been worried that she hasn't been progressing in this area.  

Tim and I are both exhausted today.  Yesterday we were so tired we took brief naps in the reclining chairs in the ICN.  Despite our fatigue, we made it to five of Clare's eight care times yesterday.  I don't know if we're going to make it to that many today.  Tim's now on his way to get a third cup of coffee.

What a good day...

Clare was quite a doll today. We're starting to sync better with her feeding times (or she's starting to realize when we get there) and she's just lapping down the milk! Today at two feedings it took no longer than about 15 minutes to feed her. Granted, she is still only getting about 9 ml of milk, but man, at 8 PM she had that down in about 5 minutes!
We have a little concern about the lack of stool. Our nurse today told us that she may request a suppository, but the evening nurse said that with her feeds just starting yesterday, it isn't at all weird that she hasn't had a bowel movement, so we best hold off on such things. I think Amanda was concerned because laxatives are such an assult on adult bowels, imagine being 34 weeks gestation and having them. We'd love to have a big green surprise in one of those Pampers, but we can wait too.
We are loving our contact with Clare now. We either breast or bottle feed her every three hours, and one of the things that's a joy is to burp her. We like the old school way: put the cloth on the shoulder and pat the back, listening for the burp. It's just so nice to hold her for a little bit afterwards, as with a little milk in her, she usually falls asleep after the burp, right there on the shoulder. Pretty sweet! It's still kind of a drag, though, as we do have to put her down right afterwards. She's a preemie, after all.
Of course, we are now starting to struggle over car seats, which ones are really safe and all that.

A suppository?!!

Correction from this morning:  apparently there _weren't_ any products in Clare's diapers last night.  They were just wet.  So aside from a small deposit yesterday afternoon, we have no proof that Clare's intestines are working as they should.  Today's nurse mentioned offhandedly that if her 2pm diaper didn't have some matter in it, she'd give Clare a suppository.  A what?!  No one has ever mentioned one of those before.  And her 2pm diaper was just a wet one.  I hope it isn't too harsh on her already sensitive system.

So far, so good...

Clare got through the night with normal, healthy products in her diapers and we were thrilled to find her awake, and without a gavage tube, when we arrived this morning.  She took to her bottle right away and sucked down the now 9 ml without falling asleep or needing to be reminded.

Sometimes all this obsession with these little developmental steps strikes me as absurd.  Had she been a term baby, these would've been givens and certainly nothing to blog about (or it would be a blog no one would bother reading).  Then I remember how she's still supposed to be in the womb, not using her lungs, not digesting anything, learning to suck on her fingers, and padding herself up with baby fat for delivery.  Yesterday she was 34 weeks' gestation--there's still 6 weeks till she's "due."  Then I remember that each little developmental milestone is a step closer to coming home and beginning our family...a step closer to normalcy, to a time when what we find in a diaper or how much she eats isn't newsworthy to anyone.  

This is such a strange, living-in-the-moment existence.  Tim and I mark time now according to her feeding and care schedule, not according to hours;  of course, we haven't worn our watches in weeks because we can't in the hospital, where we're scrubbing down constantly.  I think vaguely about work, and about how today is a half day and this afternoon will be the end of the year staff luncheon, and if I concentrate I can figure out what period it is right now and picture what I'd be doing if I were there.  I'm sad that I missed out on the end of the year, for many reasons.  For one, I wasn't part of all the end-of-the-year banquets and celebrations that are exhausting and keep us away from home many nights the last weeks of the year...but it's those many night events that make the end of the year feel that much more like a major accomplishment.  I'm sad I missed seeing the seniors go, and I'm sad I missed that wonderful feeling around campus when the seniors leave, and just the sophomore and junior classes are left, and it feels like a real small school where everyone knows everyone else.  I'm sad I missed the giddy interaction with colleagues, fueled by our anticipation of summer and a break from the students and parents and crises.  I'm sad I will not have earned that period of "emotional detox" that we educators feel for the first couple weeks of summer, as we process all the small failures of the year and fail to give ourselves credit for the many things we did accomplish.  I'm sad I missed three and a half weeks of lunches with Mark, Brian, Sterba, and Sutich (and Lisa too), and I'm sad Clare didn't get three and a half more weeks to listen to us all laugh together every day.  I'm sad that I missed three and a half weeks working with Alberta.  I'm not sad that I missed out on the last attendance appeals.

I know that work right now is a lot like an alternative universe, or maybe Bizarro World.  What a very strange existence this all is.

Sometimes I wonder if all this will ever resolve itself.  I know I shouldn't gripe...there are parents whose babies are in the hospital for months, whose babies have to have major surgeries or face significant handicaps...and we've only been at this a few weeks.  Still, Clare never leaves our minds for an instant, even while we sleep.  And our anxiety never quite leaves us, either.  Bringing Clare home, and creating a normal life with the three of us, seems so far out of reach.  

Greasy Green Poop in a Diaper!

After what we've been through the last week or so, it was a welcome sight! Clare wen't back to feeding on breast milk today, and we were even surprised to learn that we were going to start feeding her from a bottle. She started at 6 ml every three hours, and it was an amazing learning curve for us to bottle feed Clare. Both of us bottle fed her, we really weren't very good at it, and it takes a lot of energy for Clare to do it, so she may end up with a feeding tube in her nose anyway (gavage, I think it what it is called). Still, for the future, we will know what to do and what to practice. Clare was amazingly awake after she was fed for the first time, with lots of views of her pretty big eyes and lots of stirring. Having used so much energy though, she was barely awake for her 2:00 feeding, and only mildly more up for her 5:00. We will call the nurse after 8:00 PM to see how she does later on.
Amanda called today with our little girl a wonderful gift for her birthday. To make what seems to us to be a milestone, actually feeding on breast milk rather than living on IV fluids, was what we both wished for. The bottle part was a huge bonus.
Thank you to everyone who are sending us stuff, such as food, baby clothing, and useful baby gifts. We're not completely convinced that she will ever be big enough to fit in 0-3 month old clothing, but someday (by the time she's 10?) she will fit. We look at other people's infants and toddlers and say "geez, that kid's huge!" every time we go to the hospital.
The hospital is starting to feel eerily like home now, like our regular house isn't quite complete and only temporary, but Tacoma General is the real thing. Everyone has to be let in to their own house by a receptionist, right? Everyone scrubs for three minutes with surgical scrub and can't wear jewelry and locks their things in a locker. That's beginning to be normal for us.

Clare is now officially four pounds, eleven ounces.

Wednesday, June 11--6pm

We are completely wiped out today.  Clare's feedings were met with varying degrees of success throughout the day.  At 11am Clare was ambitious in her efforts and she stayed awake long after we put her back in the isolette.  2pm was difficult because she wouldn't wake up--no doubt because she stayed up too late after her last feeding.  At 5pm she was still sleepy and only opened her eyes a time or two, but then got her act together and finished her bottle.  We expect to find a gavage tube in her tomorrow, since she's tiring out so easily today.  The good news is, we found a surprise in her diaper at 2pm but it wasn't a bad surprise;  it looked healthy, no traces of blood, so we're hopeful her little alimentary canal is all healed up and stronger than before.  Tomorrow she gets bumped up to 9 ccs from the 6 she's been taking today.

The feeding tacks a surprising amount of time onto her usual diaper care and temperature check.  Today we felt like we were running a relay race...over and over and over.  At 8am, 11am, 2pm, and 5pm, the baton gets passed to us and off we go to complete our leg of the course.  It seems we barely had time to clear our heads after the last care cycle and feeding, and here it was, time to start all over again.  No wonder Clare is tired.  Can she get any quality sleep when we keep bugging her all the time?  This worries me a bit.  Forget kangarooing today--we were overstimulating her as is just with the addition of bottle-feeding to her routine.  

I've gotten so used to Clare that I've forgotten how small she really is.  When I burped her, she just looked so tiny, like a small child's baby doll.  I come home and the cats look HUGE.  All of the cats weigh between three and four times Clare's birth weight.  It's like finding woolly mammoths living in the house.  Funny thing is, Clare's skull and brain are already bigger than the cats', which makes them look all the more absurd.

So all this anxiety over her first oral feeds has left us emotionally and physically spent.  I think that Clare's not the only one overstimulated today.

Wednesday, June 11--Day 16, 10am

I'm a little giddy this morning.  We found her this morning in her new isolette, which she was switched into last night (it's an older, simpler, smaller model), wearing a pink fleece sleeper that said "Mommy's Little Girl" on it--a great birthday present!  This was followed by some quality time interacting with a very awake Clare, who was demonstrating some particularly powerful rooting behaviors and quickly managed to grab Tim's knuckle, pull it to her mouth, and try to nurse off it.  Soon I let her take a shot at my knuckle, and I was amazed at how much she had progressed:  she was chomping down with her little toothless gums and drawing significant suction.  This gave us endless delight and we put off changing her diaper till nearly 8:30 as a result.

Dr. Mulligan oked her to begin feeds via bottle or breast and at this point, she isn't needing a gavage tube (she may need to have one as her feeds increase, if she gets too tired to finish).  She started this morning at 9am with 6 ccs in a little bottle--probably less than a tablespoon!  Our wonderful nurse Lisa showed me how to hold her to the side so that if she forgets to swallow, the milk collects in her cheek rather than pooling at the back of her throat.  Clare was sleepy, but nonetheless took to the bottle right away and was able to coordinate sucking, swallowing, and taking little breaks to breathe.  It was so amazing to watch!  I also got to burp her twice, and here she proved indeed to be her father's little girl with a couple of substantial eruptions requiring little encouragement from me.  She then fell into a deep sleep, so we put her back in her new isolette and are now in the cafeteria enjoying some oatmeal and coffee.  We get to try again at 11:30am.  We'll also be trying to put her to breast so that she learns to nurse from either me or a bottle.  

At this moment I'm not too worried about what comes out her other end, and I'm trying to really enjoy my lack of trepidation for the brief time it's here.

Late Tuesday--June 10

Today was a mixed bag, that's for sure. On the eve of when Clare is to restart her feeding, she was examined by a cardiologist (as you may have read was going to happen) and he told me that she has two heart defects--one called a PDA and another called a VSA. For the latter, he seemed unconcerned--preemies often have these defects and they usually resolve themselves. For the former, he said that she will probably always have it, and since it isn't as pronounced, would be more of a risk to fix than it would be to leave. Still, it does place her for future risk of stroke later in life. We were wondering if it was the cause of her edema, and the cardiologist said it wasn't.

A student of mine had the same conditon, but more pronounced, and had to have the open heart surgery to repair it. Here's to hoping that medicine continues its incredible advances and she can have some sort of laser cauterization to fix it, like daddy's vocal chord warts. In the meantime, dad and mom will certainly be encouraging her to participate in some sort of endurance sport if she can, to strengthen the heart and the rest of her cardiovascular system.



Clare met her maternal grandmother and great-grandfather today. Grandma Narda and Great Grandfather Phil happily greeted little Clare as the bundle of joy that she is. Narda held her while she slept and demonstrated good pacifier skills.

Tuesday, June 10--Day 15

I'm in a bit of a panic and trying not to be.  Clare is having an echocardiogram (ultrasound) on her heart today, because they've detected a periodic murmur that I think is showing up more frequently and more pronounced.  I wasn't really worried until today, with the addition of "showing up more frequently and more pronounced" part.  About 50% of preemies have murmurs, and they often correct themselves on their own.  This is because an infant's heart has a hole that needs to close (in the womb, blood moves directly between the ventricles because the baby doesn't breathe;  after birth, this channel needs to close up, rerouting the blood from one ventricle to the newly-engaged lungs, and then into the other ventricle) and many preemies haven't had a chance to do this yet.  These are the murmurs that resolve themselves on their own as the baby matures.  But what's this about it getting more pronounced?  Her blood oxygen levels remain good and her lungs remain clear, but she had edema and what about her blood oxygen levels being a little lower today than usual?  Thoughts of surgery and fears of more time in the hospital are creeping in, though I'm trying to shoo them out.  I think of all the ultrasounds we had with Dr. Read over the course of the pregnancy, and each time he specifically examined her heart, looking for signs of genetic abnormalities.  Each time he showed us how well Clare's little heart was working, both by examining its structure and by looking at blood flow.  Her heart was part of what Dr. Read called her "beautiful anatomy," and I'm just hoping that giving birth to her too soon hasn't compromised this.

One of the noisy babies is going home today.  We wish him and his family the best.  New babies have come in--one all the way from Grays Harbor.  It won't be long before we know them all by their cries too.

late June 9, 2008

One thing that has been consistant about Clare since before she was born is her hiccups. Early on in the pregnancy, in the second trimester, Amanda would notice a consistant "click" coming from her abdomen. Eventually we figured out that Clare was getting the hiccups. She still gets them often. Today they passed onto Daddy as he held her (they got so annoying that eventually I had to ask to put her away, because I'd watch her respiration and heartbeat shake on the monitor). Even though my period of holding her was truncated, at least I got a tiny bit of quality time with her.

She is just such a little doll. We want to hold her and touch her and carry her around and, of course, she's a preemie and needs as much sleep as she can possibly get to develop.

Yesterday she met her Grandma Mary for the first time. When Amanda asked if she looked like me, my mother was able to recount a lot of what my brother and I were like at that post-birth stage, but remarked about how much cuter little Clare was than either of us. It was a nice session for both of them, I hope.

We got a chance to talk to Clare's doctor today about her huge weight gain. He agreed that six ounces in two days was a little much, agreed that she was probably holding onto a bit too much fluids and prescribed some Lasix for her. At the 8 PM care, she fulfilled the prescription with a diaper that felt like it was six ounces.

One thing we've also been using in her care that is interesting is a paste developed at Tacoma General called "Dr. Abdullah's Paste". Babies have problems with yeast infections sometimes, in part because of the use of antibiotics, but also because of the perfect environment created by the tropical nature of a wet diaper. We noticed some redness and some spots on her bottom on Friday and were prescribed some Dr. Abdullah's and the redness and the rash went away. The stuff is kind of a combination of Aquaphor and Neosporin and other stuff that is good for baby's skin. It is pasty and we kind of paint it on her at diaper changes. The nurses swear by it, and it certainly does the trick.

With some excitement, anxiety, and intrepidation, we anticipate Clare returning to breast milk on Wednesday (kind of a birthday gift for Amanda, I guess). It is kind of scary, seeing how her first attempt was so frightening, but at the same time, she is that much older now and maybe that much more ready. We hope that this will transition her from the Giraffe incubator/isolette and into an open crib. We like the isolette-it is a quiet warm environment (Amanda calls it "her little terrarium, where little girls grow big and strong"), but know that she will be that much closer to home when she is in the crib. One step at a time, right?

Monday, June 9--Day 14

Clare finished up her antibiotics today, and Dr. Mulligan gave her a one-dose diuretic to clear the excess fluid that caused her 5-oz weight gain a couple days ago.  And man, did she fill up that diaper!  Just one more day until she goes on feeds again, about which we're both excited and anxious.  Dr. Mulligan did say today that she'd be getting only breast milk, and not breast milk mixed with formula. Since breast milk is easiest on a baby's system, this is a relief.

Today was difficult at times.  Clare is between two babies who are significant criers, and depending on my mood, I vacillate between feeling awful about their crying (one in particular we know has significant medical issues and is no doubt in pain or at least uncomfortable much of the time, and the other we think is probably not very good at self-soothing) and feeling tense.  Thankfully, Clare doesn't seem to mind--and we know she can hear because she startles when we open an isolette portal door too loudly.  I at least find it hard to completely relax when the neighbor babies are inconsolable.

In addition, we don't have much privacy with her, either.  We have curtains that we can draw around her isolette so I can pump or Tim or I can kangaroo her, but the curtains are only about five feet tall and anyone walking close by can see in if they chose to look.  Thankfully, families are respectful of one another and don't, but the nursing staff often has to check in on Clare's lines and the curtain butts up against our nurse's work area, where she does her reports and works on the computer, so there just isn't a lot of privacy.  A number of people told me that when I delivered, I'd quickly get over any sense of modesty;  I just figured I'd regain it after my baby was born!  Granted, it's no big deal--the nursing staff is wonderful and they're just grateful to us moms who pump, because I don't think a lot do--and I feel ungrateful for griping, because the whole setup is created so they can provide the intense medical care our babies need, while giving us parents a semblance of privacy with our babies.  I guess some days I just bring more resilience with me than others, and today just wasn't one of those days.  I just want my baby to be well enough so that I can hold her when I want to.  It's hard to be a mom without a baby.  

Sunday, June 8--Day 13

It's hard to believe Clare will be two weeks old tomorrow.  The past three weeks have just been a blur, starting with the membrane rupture and hospital bedrest, then the labor and her birth, then the NICU, and now over a week in the ICN.  I sometimes wonder if I couldn't go back to work even to attend graduation or the end of the school year luncheon, and then I know I just couldn't handle trying to focus on something else right now.

Today was the first time Clare stayed awake and kept her eyes open when we held her.  I kangarooed in the morning and Tim did so in the afternoon, and both times she stayed awake after we changed her diaper and took her out of her isolette, her little eyes rolling over our faces as she sucked on her pacifier.  While she still isn't holding her gaze--not like full-term newborns who can spend some time looking in their parents' faces--her eyes aren't wandering away from one another as much and she's keeping them open longer.  This is particularly good because it indicates she's ready to integrate another sense into her understanding of the world.  Preemies can only filter so much sensory information and are easily overstimulated, so her ability to add sight to her other senses when we hold her (touch, hearing, and smell) is a big step.  I can't wait for the day when she does look into our faces, or truly turns in our direction when we talk.

Clare tried to nurse on Tim's chest this afternoon.  Apparently, we didn't get her the binky fast enough.

And her weight gain yesterday seems to be legitimate, because she weighed 4 lbs 13 oz today.  I'm still a little nervous about a five ounce gain in one day, so I'll feel better after Dr. Mulligan checks in with us tomorrow morning.  While this sounds like she weighs a lot, and everyone seems to know a baby of similar size who went home with no problems, it's important to note she still isn't even 34 weeks' gestation and we won't know until after Wednesday if her digestive system is strong enough to process food.  And she has yet to graduate to a cradle, which won't happen until after she's taking feeds again and is old enough to regulate her body temperature.  The three things she has to do in order to come home are:  self-manage her body temperature, feed from either breast or bottle, and gain weight and grow.  So despite her weight, we are still looking at weeks left in her stay at the hospital.  

I'm trying to feel good about two weeks passing already--two weeks of hospital care under our belts and we're that much closer to coming home--and it's kind of working.  I think maybe I can see a light at the end of the tunnel.  But it still feels like a very, very long tunnel.  The Chunnel comes to mind.

late Saturday--June 7, 2008

An uneventful day with baby...late start, quick call to the ICN staff to let them know that we were going to be late and do her care, then a wonderful hour and a half watching Amanda hold Clare, followed by an hour and a half for me. We didn't put her back until 11:30 AM to start her care. It was truly wonderful, even if I did doze off for a bit while I held her. Like daughter, like father, I guess.

We got word from the evening nurse that she has spiked to four pounds, eleven ounces. We were a little shocked--she isn't being fed right now, save for an electrolyte solution (Meg called it "baby Gatorade") and lipids introveneously. The previous evening nurse swears she weighed her three times, but five ounces in a day? We were worried. I guess I would be more so if they weren't constantly weighing diapers and taking blood tests from her.

She is such a dear. Preemies, lacking self-soothing behaviors that term babies have (like thumb-sucking) will cry and cry. If we weren't there all the time and familiar with their parents, we would feel sad that maybe that baby doesn't get visited and held a whole lot. Little Clare doesn't seem to do this a lot though. Way back in the first term of the pregnancy we bought this device called a "baby plus," which played a week's worth of the same rhythmic beats, that progressively and weekly got more complex. We did baby plus even when Amanda was in the hospital prior to Clare's birth, and we wonder if the wild snake oil claims made by the manufacturer weren't true? We both knew enough about instruction to surmise that there may be some truth to those claims, and it seemed fathomable, but she seems, well, quiet and able to calm herself down.

Maybe her parents should wear the baby plus around their heads for six months and see if it works on them.

She makes these little noises that makes her all the more adorable, this sort of sweet "unh!" and "ooo" noises as she drifts back to sleep in our arms. We can watch her make nursing motions with her mouth as she sleeps and dreams. Sometimes we try to put her pacifier in to work those latching muscles, but she usually doesn't take it when she's sleeping. She just dreams about it, we guess.

Sometimes I wish we didn't have data access to her constantly, like her heartbeat, respiration, and SpO2 pulsameter numbers. I think a lot of times it either makes us nervous as her O2 levels drop or respiration gets erratic, or the cyclist in me tries to "improve her performance" by holding her chest out away from mine to reduce the effect of her weight of resting on me, taking deep breaths (since preemies are supposed to mimic or reflect the parent in kangaroo care), and holding her as still as I can to reduce her heart rate. I wonder if it takes some of the enjoyment out of parenting, but then again, we aren't "normal parents" of a preemie.

God, in the future I hope we forget about all this preemie business. I'd hate for her to get stigmatized as something that we needn't do, as I want her to be as normal as we can possibly raise her (except having exceptional bicycle handling skills by the age of 6, of course).

She finishes her round of antibiotics tonight or tomorrow, I can't remember, but I do know the ICN will try to start her back on breast milk as of Wednesday. I guess that could be some sort of birthday present for Amanda.

Saturday, June 7, 2008 Day 12

If I have one more nurse come up to me and ask if:  a)  I have any questions about lactation for her;  b) I'm pumping every two to three hours;  c) I'm eating well and drinking enough water;  d) if I have any other questions about lactation for her...  I'm going to scream!  The answers are:  a) no, b) yes, c) yes, d) no!!!  It's starting to make me even more self-conscious and defensive, if that's possible.  Not to mention, it doesn't do much for performance anxiety.

With Clare, the nurses have been wonderful.  We got kind of spoiled last week by having the same nurses for several days in a row.  Betty especially was able to work with us for a number of days and got to know us well.  Since we've moved away from the quarantined baby, it's been more of a revolving door so each new nurse feels she has to educate us about proper techniques in handling, diapering, temperature-taking, etc., and we have to educate her about ourselves, and that we aren't a couple cans short of a six-pack.  Last night, in fact, I almost screwed up Clare's weighing by still having my hands on her when I shouldn't have (she was fussing!  I couldn't just ignore it!), and the nurse physically grabbed my hands from across the isolette and took them off Clare and gave me a brief scolding.  !!  I took a couple deep breaths and didn't let my pride get the best of me;  the most important thing is how well they're taking care of Clare.  What we've discovered is that the nurses, because they deal with all sorts of people (including the quarantined baby's teen parents), they can't just assume we're all functioning, responsible, and contributing citizens who actively educate ourselves about caring for our babies.  And it's not like we show up flaunting our middle-class status:  while we're always clean, we dress pretty casually, and our gray hair doesn't seem to elevate us in any way either.  So, despite my puffy-chestedness at insinuations that I may be an incompetent mother, I completely understand the need for it and will gladly ignore it if my little girl is being taken care of by skilled, detail-minded professionals.  They can't afford--and the preemies can't afford--for the staff to make assumptions about our abilities.  This has been an interesting thing to learn.