NOTE TO READERS:
These are most of the email posts that I sent out after the girls were born on 11 June 2006. I resisted blogging at first because, given everything we were going through, I wasn't sure how public I wanted this experience to be. As it turns out, I should have blogged all along because my hard drives--yes, that's a plural--both crashed and died in October-November of this year and I lost all of my email (including all my updates). Sharon had most of them, and so I am reposting in one big file everything that we have on hand so that a. we have a more permanent record than that afforded by my hard drive on the new computer and b. so that anyone interested in technical details can gain access to them if they need or want to read about our experiences at greater length. I will add in the photos later!!!
Saturday June 17, 2006
Sorry about the group nature of this email, but it's the easiest way of getting everyone information about how the twins are doing. Needless to say, Sharon and I spend most of our time running back and forth to Pennsylvania Hospital to see the girls and that doesn't leave a whole lot of time and energy for anything else.
Anyway, here's the latest on the twins: Both Olivia and Hallie are doing really well. Olivia is off of the high-velocity ventilator and back on to a regular one, which is a good sign. The amount of oxygen that she is getting is minimal (in the low to mid 20s---our air is 21% oxygen, for a point of reference). This is also a good thing, because it means that she can tolerate and do well on room air. Hallie is still on the high-frequency machine mostly because they are watching her lung status---on Tuesday she had some evidence of tissue damage (called PIE) but by the end of the week (Thursday, I think), her chest xray was clear. They're going to give her a bit of time and then switch her over to the other machine. She, too, is in the 20s on oxygen (upper, rather than mid). Both of the girls have been weaned off of dopamine (for blood pressure issues) and insulin (for blood sugar issues). So they are just getting IV fluids at this point. Their skin is beginning to thicken (when they emerged, it was pretty gelatinous) and even though it looks like it is peeling and raw, the nurses assure us that this is a good sign. They have each gained a bit of weight (one ounce apiece, which is little to us and huge to them), and that too is a good sign. In other words they seem pretty stable and they are not giving their nurses and doctors a hard time (which is excellent; we like nothing more than to see them being ignored---the first day or two there was much too much medical hovering for my liking).
They are still having a few issues that we need to keep an eye on: their PDAs (pulmonary duct arteries) need to close---if they don't respond to the medicine (Indocin) that they have been administered, then they will need bedside surgery. And we need to keep an eye on their head ultrasounds---happily, at this point, neither is presenting with a Level III or IV IVH (Intraventricular hemmorhage (which correlate more strongly to serious developmental issues like debilitating cerebal palsy and retardation), but they do have a Level I (Hallie) and a Level II (Olivia) and this has us concerned, of course. Thoughts about IVHs, infections, surgeries, and all sorts of other stuff have me and Sharon worried and not sleeping terribly well, but we do know that the doctors and nurses are doing their best to help these girls grow and recover from the trauma of their early birth.
Otherwise, in cute moments in the girls' little lives: Olivia was all scooched up on her side and looking comfy and sucking her fingers the other night, and Hallie, when the nurses were changing her teeny weeny little diaper, decided to pee again all over the clean new one. Very clever. Anyway, in this respect, the two of them are acting like any other newborns, and this makes us happy.
I'll update you later on this weekend or early in the week about how things are going.
Wednesday June 21, 2006
Again, excuse the "group" nature of this message; we've been exhausted and really sleep deprived, and hence quite unable to fathom writing individual emails or even responding to lots of the wonderful messages many of you sent us (or phoned in to us). We will try to write or call in a more individual way when we have the energy to do so.
As the doctors warned us when we began this adventure, dealing with children in NICU, particularly such extreme micropreemies, can be something of a roller coaster ride. We had a few really good days when the neonatologists were able to successfully get some of their levels (sugars, salts, blood pressure, etc) under control by manipulating various of their medications. As you probably recall from the last dispatch, the girls were doing well on fairly low amounts of oxygen and were being transferred from the high-velocity ventilator back to the regular one. Unfortunately, that particular honeymoon phase ended on Friday for Olivia and on Sunday for Hallie. It now turns out that both of them are fighting yeast infections (fairly innocuous if annoying in adults with well-functioning immune systems, but much more potentially devastating to those without mature or healthy immune systems). Hallie's is definitely systemic (I am not sure whether they would use the term 'septic' in her case but will ask today) whereas Olivia's may be less virulent (her blood counts are better, which suggests that this is the case). They are able to treat the infection using an antifungicidal drug but the course is a long one (21 days if the infection does not involve her central nervous system and a lot longer if it does) and it's not entirely clear to them when they might begin to see a reversal in symptoms (like a healthy blood count). And obviously any infection is destabilizing and can be pretty traumatic to someone so small and immature.
This is particularly problematic for the kids because they really need to get their PDAs (those nasty open ducts in their chests) ligated (operated on, in other words) as soon as possible since the three courses of indocin (the drug often used to close these ducts) administered to them last week failed to have any impact. Only this will help stabilize their breathing, permit them to get sufficient oxygen to their lungs (so that they can begin to be weaned off of the respirator) and allow them to 'eat' (or at least ingest some breast milk). Meanwhile, their breathing has gotten worse the longer they are on the ventilators without having this surgery, and this has us very worried, because we fear the impact of the rather persistent drop offs and rises in oxygen levels. These persistent desaturations (desats) are worse in Olivia's case than in Hallie's (Olivia hates to be handled and has a very feisty spirit and likes to fight back against her care providers---we love her independence but think it may be ill-served in this context). But Olivia, as of last night, did seem to be doing better than her ever-so-slightly bigger sister (numerically---and I am not sure that the surgeons care about much else).
So, to sum up, we are in somewhat of a holding pattern, and not a great one--this explains our utter exhaustion (I am drinking coffee and simultaneously nodding off, even as I am typing this).
Even through all of this, there are some cute moments to report:
1. Hallie opened her eyes. We are not sure she can see yet but we are sure that her eyes are lovely. The nurse on duty on Sunday night (when this happened) was really excited and couldn't wait to tell us. And we got to see them for ourselves on Monday night.
2. Sharon and I got to change Hallie's diaper. The same nurse (Ellen) was eager for us to do this (not because she wanted to avoid her job) but because it gave us a chance to bond. It was fabulous. I never thought I'd be looking forward to diaper changes quite so much, but I am.
3. Sharon got a lesson in calm holding of preemies with another nurse on the same night. Olivia was pretty agitated (who wouldn't be if they were poked, prodded, and manipulated, and had tubes stuck in them 24 hours a day), but Sharon held her tight by placing both of her hands over her small body and Olivia calmed right down. I think Sharon did, too.
So, even throughout all of this, there are some touching, special moments that we're having with our girls. We're keeping our fingers crossed and holding tight to the idea that someday soon they might outweigh the stressful gut-wrenching downward slide of the roller coaster ride that we're now on.
That's all for now, but I promise to try to update everyone soon.
Friday June 23, 2006
Here's another status report on our girls.
First, the truly good news. Today, when I went over to the hospital (later than usual, mostly because we really trusted the nursing care that both of the girls had today---this has been somewhat of an issue vis-a-vis Olivia of late and we were thrilled that a very nice, extremely competent nurse was in charge today), I ran into two of the neonatologists first thing. Eric and Lenny (I probably would call them by their last names, not their first, but that's how I think of them) were very happy to see me. Eric (Dr. Mallow) is by far the most conservative of the neonatologists with whom we have dealt. He was none to eager to have us deliver and resuscitate back when Sharon checked into the Labor and Delivery Room at all of 23 weeks pregnant. He was guarded even when she did end up delivering at 23 and five days (we were holding out for the magical 24, but missed it by a bit, obviously). Anyway, today, Mallow had a huge smile on his face when he saw me and said that he'd been looking for us last evening (we were probably out for dinner---they kick us out of the ICN at 6:30pm for an hour while they change shifts). Yesterday, they did spinal taps on the girls. They were looking to see if the infections had entered their Central Nervous Systems (not a good thing---something that the briefest of google searches pointed out to me when I conducted one a few days earlier). The fluid that they had retrieved from Hallie was very clear, and the fluid from Livvy (our current favorite nickname for Olivia) was a bit less clear, but not alarming. They did the labs on them and the girls were meningitis free. This is a very good thing. I was as giddy as Mallow was upon hearing the news and this sustained me for most of the afternoon and into the evening.
Livvy was stable (for a change) today---for the past few days, she's been desaturating in terms of her oxygenation level really frequently, and even though her CO2 levels have been much improved during that time span, seeing her on 80 or even 90 per cent oxygen at times has been troubling, to say the very least. Hallie was quite stable for most of the days (there were a few instances of Bradychardia---where heart rate drops suddenly--and desaturation, but nothing too alarming this morning and early evening, and when I arrived at the hospital around 3pm, her oxygen level was a mere 24% (remember that room air is 21%). So things started out really well.
We had a huge family pow wow with Eric Mallow a bit later on and he laid out the plusses and minuses of performing the PDA ligation (closing up the duct in their hearts) sooner rather than later, and vice versa. Livvy's platelet count was up (suggesting that she's fighting the infection well) and Hallie still has a low platelet count and is fighting a surface level Group B Strep infection. A rapid move to PDA under these circumstances might exacerbate morbidity (or even jeopardize their mortality). On the other hand, having the PDAs open means that they are at risk for worse lung disease and perhaps some other issues. In the end, we considered that it might be prudent to wait until Monday or Tuesday to do the ligations.
Still, our mood was a good one. This, alas, began to shift a bit around dinner time when Hallie went into the disturbing sort of desaturating cycle exhibited by her sister a day earlier. One minute, her pulse ox would be reading 97 and then she'd plummet, rapidly, into the 60s, 50s, or even lower (82 is the safe limit). Her heart rate would also plunge. Nurses would gather round, perhaps bag her, turn up the oxygen level, and hope for recovery. This happened a dozen or more times tonight (between 8:30 and midnite). This is very troubling.
Just as troubling is the physical fact that her chest area is so small compared to her sister's and that the Nitric Oxide therapy that she is on may not benefit the smallest and sickest of preemies (at least according to one study conducted at Stanford last year). I know she's defined as smallest (less than 1000 grams) and imagine she is also defined as the sickest.
This has us both (and everyone around us) really rather worried.
Yet, we do have some great new moments of cuteness and sweetness to convey, and as usual, I will end on this up note.
Yesterday, we requested that the nurse get Hallie a binky (her sister already had one). We were getting her to suck it, but she did not have the power to keep it in her mouth without having someone hold it up (her hands have IVs and the like on them). So I was holding up her binky when she grabbed hold of my finger with her fist and held it fast (much as a very young baby might do). It was amazing. I must have stood there for 20 minutes or so, with her grasping me, my arm falling asleep, and being afraid to move lest I disturb her. I fell deeper and deeper in love with her over those minutes (which of courses makes me even more worried about her status tonight).
Today, Hallie had her bili lights off (these are bilirubin lights, designed to get rid of jaundice) and so she was no longer wearing her oh-so-fashionable bili headband. Her eyes and amazing eyelashes were in full view and she was no longer glowing that eery blue glow cast by the bili lights. She looked so sweet, so vulnerable, and so baby like (she's filled out some and has lost that early-fifteeenth-century icon look that she had at birth). Both her and Livvy's skin has thickened and softened, and they are so sweet and beautiful that I could scoop them up (one palm apiece, as it were) and hug them close if only they weren't so tiny, fragile, and hooked up to so many wires.
But on that note, Livvy was sporting a totally cool new fashion today. Her fabulous nurse, Keisha, had designed for her these leads (to check heart rate, pulse, etc) made out of a velcro like substance that would a. stay on her and b. not rip her skin up with adhesive. Her skin looked great, and she had all these cool bands (very tennis pro, if you ask me) complementing her biliband (she's still aglow in blue right now). But she is styling. Let's hope that she comes out from under those lights and that her eyes fully open really soon.
Anyway, to close with a small observation, that is more winsome than it is cheerful in nature. Around here, it's not only one day at a time but it's also a roller coaster between two very sick kids. If one is doing well, we worry our heads off about the other. The next day, it's often vice versa. I would love it if we could get to a point where we were stable with both of our girls. I know that parents worry no matter what---that's part of what being a parent is all about. Nevertheless, I feel like we are learning this lesson just a bit too fast: often, you have them in their cuddly warm roundness to hold tight to you before you send them off into the world (entrusting them to diaper changing by a stranger, at least) and you enjoy those first few moments (I imagine) before panic sets in about whether indeed you are able to provide sufficient nutrients to them in your breast milk or whatever. I mourn the loss of those feelings of safety, warmth and security--not so much for myself but for those two little girls enclosed in incubators in Pennsylvania Hospital. They have very good care, the best care, really, and tonight they are safe in the hands of nurses who love them and who want to protect them. Nevertheless, this does nothing to prevent them from being poked, prodded, tested, and evaluated pretty much constantly. It is sad that their entry into this world has had to be traumatic but I am very grateful that they are with us, even if not in our home then at least in our hearts.
That's all for now. Wish us a day without great crises and events tomorrow, and the next day, and the next.
NOTE: Olivia Skye lost her fight on June 28, 2006. We weren’t able to send out a notice about this ourselves, so Aunt Laura had to handle it for us. This was a day after Hallie’s successful PDA surgery; we were too upset about everything happening to write about this and, besides, were at the hospital non-stop for three days and hence out of range of the internet anyway.
July 4, 2006
A couple of brief updates on Hallie.
She's had a relatively good day. While she continued to have episodes of bradycardia during the afternoon, they tapered off and more importantly she lifted herself out of them (without needing the intervention of her nurse). Her chest xray was okay (nothing stellar but nothing frightening) and we are still awaiting the radiologist's report on her head ultrasound.
Most importantly, she actually started feeding today. Not orally (of course) by via gavage tube (oral-gastric) and not a huge amount (1 cc of colostrum from Sharon---so all that breast pumping is finally paying off). But she tolerated her feed at 6pm quite well (digesting everything) and was fed another cc then. After a few of such trophic feeds, she'll finally graduate to larger amounts (like a third of an ounce) and then move on to even bigger feeds. This will help her grow.
Hallie also managed to extubate herself today. She's on a high-velocity ventilator that has a rigid tube and kind of hates it. The tape was coming lose and she managed to pull it out this evening. This usually has everyone really, really concerned. It did tonight. But in contrast to her past practices (extreme oxygen desaturation, massive drop off in heart rate), she managed today to hold her own. And even more importantly, the nurses and physicians assistants, when they were repositioning her, held an oxygen mask over her face and she managed to take some breaths through it. This inspires them to transition her tomorrow morning to the regular ventilator. If that doesn't work (because it cannot provide her with the requisite pressure or something), they'll return her to the high velocity ventilator. But they think she might be ready for this move.
My knowledge base about prematurity continues to expand. I never wanted to know all this stuff (just like I had no desire whatsoever to know anything about GI disorders and duodenal ulcers specifically), but, as you can imagine, my penchant to do research remains intact and I have learned more than I could ever imagine about the problems and treatment of premature infants.
Keep pulling for us. Little Hallie has a really long way to go but we are hoping that she has the strength to carry on through all of this.
Sharon is spending the night at the hospital to make sure that Hallie is okay. I am home taking care of Bailey (the dog) and doing research on all sorts of preemie related issues, large and small.
Meanwhile, we are still in the stage of planning Olivia's memorial. We will definitely hold a ceremony but the contours of this remain unclear to us; as soon as we know what we are doing, we will let you know. We are definitely interested in doing two things, generally speaking. The first is supporting the March of Dimes campaign in memory of Olivia Skye and in honor of Hallie Rose (several of you have already taken initiative on this and we are grateful to you for this). The second is planting a tree (or trees) in a beautiful place so that Olivia's memory lives on. Sharon's sister Laura and our friend Renee are doing research on this subject and will help us determine an appropriate and fitting living memorial to our lovely Olivia. As soon as we figure this out, too, we will let you know.
Love and peace,
July 7, 2006
Sorry about the protracted silence; it's been a pretty good few days for Hallie but all of us are exhausted. Tuesday marked the 5th week of our near-residence at Pennsylvania Hospital (first in the Labor and Delivery Room, hoping to stave off Sharon's labor, and then in the NICU).
We've taken to working the swing shift---we get to the hospital by early in the afternoon at the latest and arrive home at one am at the earliest. On nights when there's some sort of ongoing drama or the nursing seems less than inspired (which are, admittedly, few and far between since Hallie has a bunch of really dedicated primary nurses), we might be there much later. A couple of nights this week, Sharon stayed at the hospital all night; this seemed particularly warranted on July 4th, after I overheard a conversation by Hallie's nurse about how she'd been out partying all day. The nurse, Sharon reported, did end up falling asleep in a rocking chair by some other baby's isolette. Sharon spent all night awake in a rocking chair by Hallie's, making sure that everything remained okay. But, as I said, this sort of thing doesn't happen too often at the ICN (the NICU is officially called the Intensive Care Nursery) and we're pretty happy about that.
In any event, this has been a banner week for Miss Hallie Rose. On Tuesday, she made the big switch from the High Velocity Oscillator (that resembles a Sharper Image Massage Chair breathing device---it pulsates at around 900 beats a minute, sending oxygen into the lungs without actually inflating their poor, inflamed and diseased tissues) to a regular ventilator. The occasion for this switch was Hallie's dextrous removal of her own breathing tube ('extubation' in med-speak). Normally, this inspires fear and anxiety in the NICU staff, who have to hover around and bag her strenuously to keep her breathing while trying to reinsert the tube. But this time around she actually fared quite well and managed to take a few breaths on her own. This sent a signal that she was ready for the big girl vent.
Tuesday also marked her very first g-tube (gavage tube) feeding. At first these feedings (of 1.5 ccs of breast milk--there are 30 ccs in an ounce, so this is not terribly much) were done every 8 hours. Since then, she has graduated to these feedings every three hours, and if she continues to do well with them, tomorrow she'll be fed this tiny amount every two hours. This is how the feedings work: A tiny line is threaded by the nurse down her esophagous into her stomach and the nurse then checks that it's in the right place by blasting a syringe full of air down the tube and listening to her stomach with a stethoscope. If the nurse hears the whoosh in her stomach, the tube is correctly placed. If not, the tube is down her airway and in her lungs. Not a good thing. Anyway, the nurses shoot the breastmilk down the properly placed tube and it drips into her stomach. Hallie gets a really blissful look on her face when this happens. Before her next feeding, the nurse checks to make sure the food is all digested---not something to be taken for granted in one with such an immature GI tract. We are happy to report that this kid likes to eat and that there are no residuals left from these feedings.
This is great news, because the food is allowing Miss Hallie Rose to grow. It's hard to believe that I now think that 30 ounces is a large size for a preemie, but I do. She's grown about 10 ounces since her birth last month, and if the feedings go well, she'll hit two pounds really soon. Go Hallie!
Given this, I realized yesterday that if we did not dress her up now in the lovely little outfit bought for her by her friend Barbara (our lovely two-door-down neighbor who is the patron saint of preemies and a great supporter of us) really soon, that she would outgrow this delightful set. So Hallie, in addition to all other milestones reached this week, embarked on her first more-than-just-a-diaper photo shoot. I am appending a photo to this message showing off how lovely she looked.
But before the photo shoot, Sharon and I had the good fortune to change her diaper again. For the second day in a row, Hallie Rose decided to poop WHILE being changed. This, much to her relief, was not caught on film and hence cannot be used to blackmail her later on in life.
Finally, Sharon got to hold Hallie for the very first time today. Her great primary nurse, Megan, was so excited at how well behaved the munchkin was (so much so that Megan actually got a coffee break today) that she offered to go through the huge hassle of bundling up the babe and transferring all of her leads, moving the ventilator, etc, so that Sharon could hold her close for about a half hour this afternoon. This was really wonderful for both of them, but of course summoned up the poignant and painful memory of holding and rocking Olivia last week. This renewed our sadness at losing Olivia---while we never will truly lose her in our hearts, we are heartbroken that we are unable to experience all of these milestones with her, too. This makes our experience of a very good time with Hallie this week bittersweet--it does not detract from the joy we feel for Hallie's progress, but it does make us wistful for that which we never had with Livvie.
July 14, 2006
It's been a somewhat crazy week for all of us. Saturday night, Hallie Rose celebrated a full 4 weeks in the ICN. We sung her resounding (and somewhat flat) versions of Happy Birthday and provided her nurses with two kinds of cupcakes (we thought of lighting a candle, but decided that wasn't such a hot idea with all of the oxygen cylinders hanging around by her isolette). One of her favorite nurses, Ellen, was on and Hallie had a very nice evening and did well with her (still rather miniscule) feeds. She also made the big transition from pooping meconium (the tarry gummy substance that is in all newborns' GI tracts) to producing real stools (I will refrain from describing, but those of you who are mothers know what they look like). This is her first graduation celebration.
On Sunday, Hallie had a great day. Her nurse, Maddie, found a magic position for her to rest in (on her side, even--usually she's a belly kind of girl) and she was going for half an hour at a time without desaturating her oxygen levels. We were thrilled and want Maddie to let us in on her secret. This was the occasion of the following charming photo:
July 22, 2006
Sorry about the lag between updates. This one will be brief since, as usual, we're running a bit late today.
Hallie has had a pretty good week this week. After a rough start with a really inept per diem nurse (who managed to fasten her diaper so poorly that she ended up pooping and/or peeing in her bed four times---this is hugely traumatic since it involves changing the bedding for a baby hooked up to various monitors five times), she has otherwise had great nurses (thank you Megan, Ellen, Debbie, Nicole, and Corinne!!!) who know her really well and who cater to her every whim (which mostly involves placing her on her tummy to sleep).
Stable nursing has also enabled Hallie to grow a bit more stable in terms of her breathing, though her lungs are still crappy and her ventilator settings are still pretty high. Her CO2 levels have been creeping up all week, and so this will probably mean some sort of vent adjustment today. However, from what the docs keeping telling us, they are not interested in pushing her off the vent terribly rapidly---they would like to see her grow some more first.
Consequently, Hallie spends most of her time eating. This is not an exaggeration---she now eats about 4-4.5 ounces of milk a day which is fortified with a whole extra 4 calories an ounce. This is spread out over 12 feedings a day (every two hours). So, indeed, she spends most of her time eating (via the gavage tube described in a previous update. It only takes a few minutes for the milk to drip into her tummy.)
That's what it should take for babies her size to gain weight at a fairly decent clip. However, she hasn't been gaining as quickly this week as she had been last week. She's put on about an ounce and a half this week (going from 880 grams up to 940, then down to 930 and then, last night, 920 grams). This still keeps her over the 2 pound mark. We talked about this last night with Ellen (her nurse) and Dagmar (who's a Physician's Assistant) and they're not too concerned yet. She's only been on full feedings for a week, and she's put on a lot of weight since birth (her birth weight was 590 grams, so she's packed on about another 50% of that on top of it).
My theory is that she's above-average in terms of her movement, alertness, and wakefulness. This has to burn more calories than, say, sleeping. Moreover, she is a champion pooper: she poops after every feeding and the poop she produces, I must say, is well-formed and quite attractive. I never imagined being the sort of mother obsessed with her baby's poop, but there you have it.
Hallie has accomplished a few things this week: she's increased her diaper size from teensy-weensy to merely tiny (though she swims in tiny). And she's been seen sneezing, which is totally cute. She's also received her first package of clothing via the internet that was ordered by her mom (that's me). This included a teeny weeny little dress (she'll wear it tonight for her six-week birthday) and several other outfits that will keep her styling.
Most importantly, Sharon got to 'kangaroo' Hallie last night. This involves placing the naked baby (save for diapering---no sense risking pooping on mommy) on Sharon's naked chest and holding her tight. Doctors in South America pioneered this technique---they found that babies whose mothers held them this way breathed better, were calmer and happier, and grew more quickly than babies who were not held in this manner. Hallie and Sharon (and me, more vicariously---I'll get my turn when Hallie is a bit more stable) seemed to love this a lot. Hallie grasped Sharon's finger and seemed calm and happy during the forty minutes Sharon got to hold her close. I am appending fabulous photos taken by Ellen below.
Anyway, wish Hallie a happy sixth week birthday and I promise to try to update you a bit sooner next time!
July 27, 2006
....not from breast milk, but from the ventilator.
This week has been a pretty good one for Hallie. While there are a few bumps in the road that we have encountered (or 'clumps', I might say--more on this later), she has, all in all, had a pretty nice time of things.
Sunday, after Livvie's memorial service, Sharon and I went directly to the hospital. Hallie's very good nurse, Jean, let Sharon hold Hallie for about 2.5 hours. This was massively appreciated by all: Sharon got the yummy warm feeling of Hallie pressed up against her skin, and Hallie got to stare adoringly at her mommy. She kept falling asleep in Sharon's arms, but every once in a while would wake up, look up at her mommy to make sure that she was still there, and then fall asleep again. It was very charming (and, no, we are not reading into the looking up at mommy thing---two days ago, we double checked that in fact Hallie can track a finger at about eight inches away from her face. It's not just my ridiculous desire to read brilliance into every move that the baby makes; in fact, I was not even in the room when this happened. The far more cautious Sharon notice this and Laura Hawley will testify to this if you ask her!!!)
On Monday, Hallie came up negative for ROP (Retinopathy of Prematurity, which is what made Stevie Wonder blind and which is the reason so many preemies walk around with cute yet probably rather annoying baby-sized spectacles). This doesn't mean a whole hell of a lot since it was early to check her, but at least she passed the baseline exam. 85% or so of preemies her age will develop some ROP (which involves the partial or full detachment of the retina caused by the growth of abnormal blood vessels between the retina and the place where it is supposed to be attached), so she will probably end up with something down the road, but hopefully it will be mild and self-correcting. If not, we will deal with it. I, for one, am no stranger to coke-bottle lenses and laser surgery has come a long way...
On Tuesday, Hallie's most recent brain ultrasound reflected no changes, which is a very good thing. It is especially good since she had a systemic yeast infection and there was (and is) some concern that it led to a meningitis event (we'll never know for sure: 'rare' yeast appeared in her spinal fluid after a lumbar puncture, but this may be due to a tainted sample---they might not have discarded enough of the first fluid that contained skin and blood cells). Anyway, no negative changes in the head ultrasound is a very positive sign. Again, like so much, it doesn't tell us what might or might not happen down the road, but it does tell us that, right now, they cannot see anything that troubles them.
Alas, with the good comes the bad, or at least that which inspires us to be concerned and guarded. Hallie's echocardiogram and renal ultrasound did in fact show 'fungal balls' or clumps that are either: a. dead yeast clumps that have collected b. live yeast balls that have collected or c. something else that seems like a or b in the black-white-and-gray conditions of ultrasounds and echos. What the docs were hoping for were clear scans. What they got was not quite what they wanted. The heart scan shows two small areas--between 2 and 4 mms apiece. I have tried to get them to pin down her heart size and how large this is relative to that, but they are a bit slippery on this question. Why these areas are a problem is related to the fact that they could break off and form pulmonary embolisms (decidedly not a good thing). In terms of her renal scan, only her right kidney is colonized by these clumps (I never found out how many and the report by the ultrasound tech was both illegible and incomprehensible to me). They certainly are not impeding her renal function (the girl can pee up a storm), but they should not be there and they could be a problem down the road.
The reason the doctors cannot tell if they are dead or alive is because the diagnostic capacity of the ultrasound or echocardiogram is actually quite limited. They know when something seems abnormal and they can guess at what the something is, but the only way to know for sure is to take a tissue biopsy. Obviously this is a lot more invasive than a picture and carries with it a slew of risks, from the side effects of anesthesia to the possibility of promoting infection.
Anyway, given that the doctors don't know if the yeast balls are dead or alive, they are treating them as if they are alive and hence keeping Hallie on IV antifungal medicine.
This situation also makes it harder for the doctors to get Hallie off the ventilator. They were hoping for an 'all clear' signal so that they could administer another course of steroids to the girl. This would lead to a decrease in inflammation in her system and help them jolt her to a spot where she weaned herself really quickly. But they cannot do that with the yeast infection since steroids suppress immunity and that's the last thing they want to do. As every woman out there and some men might know, yeast is a normal organisms that we harbor in our bodies. It is normally not a problem because our immune system keeps it in check. However, whenever something happens to disrupt the immune system, be it a long course of antibiotics or some other immunosuppressive event like HIV, we grow too much yeast. Normally, if we can kick our immune system back into gear, we can conquer it. Or we can take Monistat. But babies Hallie's age don't have robust or mature immune systems yet, so they cannot do that work. Thus, a systemic yeast infection stands a good chance of killing them---the type of infection she had carries with it a greater than 50% mortality rate. Had I known how dire this was way back when she was diagnosed, I would have been even more of a wreck than I was. She is beyond that truly critical really scary stage since she responded well to the meds, but the last thing they -- or we -- want is for her to end up with another raging bout of the yeastie beasties.
OK--so that brings me to the subject of the update (finally). They decided that, even if they couldn't give Hallie steroids, they'd begin to wean her from the event anyway. So yesterday they lowered the settings a notch from 60 breaths per minute (essentially meaning that the machine did all of her breathing) to 56 breaths (she had to do a little work on her own). And she did BRILLIANTLY! Her CO2 level dropped overnight (meaning she was blowing off CO2) and she was really stable and her oxygen saturation rates rarely dropped and often stayed above 95. She was also on less oxygen than she's been on in a while--even as low as 30%. Go Hallie! Today they are dropping the settings more (pressure down to 17--it needs to be 12-14 to come off the vent--and breaths down to 54--they need to be 20 to come off of the vent). Keep your fingers crossed that she continues to impress her mommies and fan club and nurses.
Otherwise: Hallie has hit a MAJOR milestone this week. She reached the magic 1000 grams (a kilo---2.2 pounds or 2 lbs. 3 and some bit ounces for those of you who are metric averse). In fact, she actually exceeded it (weighing in at 1020 last night). That 20 grams, however, is probably her IV line, so don't get too excited. Still, this means that Miss Hallie Rose is on her way to graduating from micropreemie status to just plain preemie status. Her nurse, Brie, got the weight on the nose the other night and has won a free chocolate chip cookie dough ice cream when she returns from vacation in 10 days.
Finally, as the above suggests, Hallie continues to be a champion eater and a champion pooper. As always, I like to end with the poop chronicles (for those of you fond of early modern European literature, suffice it to say that I have a slightly Rabelaisian streak and I love what Mikhail Bakhtin termed the 'grotesque body'). On the night that Hallie weighed in at a kilo, Sharon gave her a wee sponge bath and got her hair all nice and fluffy and the baby all clean and sparkly. She placed Hallie into, but did not fasten, her diaper. Hallie hung out there, all rosy and clean and waiting for Brie to come over and disconnect her from the vent so that she could weigh her. She was squirming and squiggling around and looking all cute. At some point a few minutes into this display of naked baby antics, she lifted her butt off the diaper with her incredibly strong legs and I noticed that she had deposited a very nice quantity of poop into her nappy. I informed Sharon, who informed me that this was a mere bit of poop and not the usual prodigious amount produced by this child. She decided to change out the diaper anyway. While she was placing the new diaper under the old one and trying to clean off the baby, Hallie decided to launch one of her projectile poops, which landed on her leg and sullied her snuggly swaddly. Sharon then had to go change that, too, and give Hallie a second bath. To do so meant lifting the baby, who then proceeded to pee all over the front of her body. This led to yet another diaper change, a whole bed change, and a third bath. She was, in the end, super duper clean and well changed and at least 20 grams lighter than she'd have been a few minutes earlier. Hence, Brie won the weight bet, and not me (I was guessing 1020 that night).
For those of you who want to play 'weigh the baby' game, we take entries every Sunday, Tuesday, and Thursday. Guess the weight on the nose and you get yourself a free ice cream!!
That's all for now!
August 6, 2006
Please excuse my protracted silence on how Hallie is doing. I was waiting to write until I had something momentous to report but, alas, the past week or so has been another roller coaster ride for all of us.
First the ups: Hallie has now decidedly broken through that crucial 1100 gram mark and weighs in at either 1140 or 1123 grams, depending on which scale you believe and whether she's pooped. Her feeding has really taken off and she is eating just under 6 ounces of fortified breast milk each day.
Hallie has also, all in all, been more stable in terms of her requirements for oxygen and her capacity to stay oxygenated. She still has some very scary ups and downs where desatting is concerned, but she has spent more time making a straight line on the monitor than anything else.
This, plus her advanced age (as of tonight, 56 days old), convinced the doctor on call (Lenny Gollub) to try and lower her ventilator settings considerably. So, over the course of the past two weeks, we've made several attempts at that (the first lasted three days and ended in Hallie vomiting up some breast milk, having to be re-intubated, and a huge scare for all of and a major setback for Hallie). But Lenny Gollub continued on the path of weaning Hallie from the vent early last week and she really held her own this time. This mostly involved an aggressive lowering of her breaths-per-minute and a decrease in the amount of oxygen she was given.
By Thursday into Friday, Hallie looked like she was doing very well and we were all quite encouraged. Lenny acted like a giddy school boy all night and was excitedly preparing to extubate Hallie and try her on CPAP (continuous positive airway pressure---essentially, she does all of her own breathing, but the pressure of the machine keeps her lungs inflated and she is provided oxygen by it. But she has take in the breaths herself and dispose of CO2 on her own).
Friday morning, Hallie was extubated. For the first six to seven hours, she did really, really well. Her CO2 levels were a bit inflated, but no worse than they are on the vent most of the time, but she was satting well (in the 90s, and mostly the upper 90s). The doctors and nurses were all pleasantly surprised by how well she was doing and this was a particularly good thing because the NICU has filled up with a tremendous number of very tiny (Hallie sized at birth and below) 24 to 26 weekers who really needed a lot of help from the doctors and nurses.
This being the case, Sharon and I joined our friend Sheila for a dinner out on Friday. When we got back to the NICU at a little before 8 pm, Hallie's situation had declined markedly---she was having trouble keeping up her breathing and her sats and her oxygen requirement (which had been hovering around 40% all day) was going up. After a bunch of crashing episodes, the docs decided to end their CPAP run with Hallie and to reintubate her.
Had the story ended there, that wouldn't make it terribly noteworthy---many many preemies end up going off and on CPAP several times before they stick to it---essentially, they get tired and need to build up more muscle and lung reserve. So we were all expecting this outcome with Hallie.
Yet Hallie had to go and make it more interesting---after getting reintubated at 8pm, she decided to extubate herself around 2am (after Sharon and I left her---Sharon was convinced to go home to sleep for the first night in three). This led to another CPAP run, which was far less successful than the first, and a subsequent reintubation early this morning that was, to say the least, hair-raising. Hallie fought the reintubation, needed chest compressions, and caused Ellen (her nurse) to break quite a sweat. No one was happy about this.
But the story also does not end there: Hallie was doing badly after the reintubation and so the docs decided to change out her tube again. So she was reintubated yet again at 9am.
By the time we arrived at the hospital around noon, Hallie was wiped out (so were we, and so were the folks in charge of East Nursery). She continued to be wiped out and very unstable all day, and when evening came around and she started feeling better, she turned into a squirmy baby who was persistently threatening yet another self-extubation.
So, to make a long story short, we're all pretty stressed out around her. Keep your fingers crossed for Hallie that the third extubation is the charm---we (and she) would love her to get off the ventilator so that she can move around more, begin to practice bottle feeding, and make good progress to coming home.
That's all for now---a little bit longer than I promised, but a pretty concise retelling of a rather harrowing series of days.
To end on an up note: Hallie has broken her own record for the preemie's heaviest diaper. Her old record was 34 grams, and her new one is 52 grams. Amazing how much pee and poop a 31 weeker can produce.
August 10, 2006
I'm really keeping it brief this time, but I wanted to share some amazing milestones with everyone.
First, Hallie doubled her birth weight. On Tuesday August 8th, at her weigh-in, she was 1204 grams, or 2 lbs, 11 ounces. And, amazingly enough, yesterday (one day later), she packed on another 29 grams. So she's now just about 2 lbs. 12 ounces.
Second, as a gift to her nurse Megan, who just returned from vacation yesterday morning, Hallie decided to extubate herself. She pulled out her breathing tube at 9:03am, this was discovered at 9:08am and she was on CPAP a few minutes later. As of a few minutes ago, she is STILL ON CPAP. This is a really good thing---her breathing is very hard work but she seems to have taken some inspiration from Sharon's heartfelt reading of *The Little Engine that Could* and she's doing a very nice job of holding her own. Her blood gases have even been improving this time around, and this has us and her doctor (Lenny Gollub) jumping for joy (quite literally in Lenny's case). So keep your fingers crossed (but please don't hold your breath)---the third time on CPAP just might be the charm.
Third, I finally got to hold Hallie. I've been offered this opportunity earlier but the ventilator/ET tube set up seemed so precarious that I declined---I would just hate it if anything happened to her. But now that she's on CPAP and a little bit more stable, I was happy to hold her. I can report from firsthand experience that she is very snuggly, smells great (if a little bit like an incubator) and is soft, cuddly and wonderful to hold. I hope to repeat this experience soon.
That's all. I am attaching a picture of me holding Hallie and am hoping that those of you who have trouble opening such things can do so easily!
August 18, 2006
I realize that I owe you an update.
This has been quite the roller coaster week. When last I left off, Hallie was on CPAP and had been for a day and a half. Alas, her wonderful run came to an end at 30 hours when she literally pooped out---it turns out that the kid had enough reserve either to breathe or to poop, but not to do both simultaneously. So she ended up reintubated again last Thursday.
This was no fun for her, so she continued to manifest her extreme disdain at her pinned-down predicament which, in turn, led to several other reintubations over the course of the weekend and early this week (I have lost count of how many).
The game plan was to give her a few more days to chill out and grow (and grow she did---she put on about an ounce a day for a ten day period and now weighs about 3 lbs even). Then we were going to get her on very low dose steroids and re-extubate her (hopefully for the last time).
Monday she had an echocardiogram which showed that her yeast balls in her heart were getting even smaller, and then she was put on the steroids.
Except that they were not quite low dose. In the world of avoidable problems, the doctor or PA ended up writing for 1.4 ml of dexamethasone every twelve hours and not the correct, and one tenth the size dosage of .14 ml of dexamethasone every twelve hours. On Monday and Tuesday, no one caught this huge mistake--not the pharmacists, not the nurses, and not the docs.
Monday night, she was fine. But by Tuesday morning she began to have some interesting symptoms: her heart rate was trending downward (by a lot---she basically had the resting heart rate of an adult) even as her breathing remained very good. This was weird. And she got very listless and pale. And was then administered her second dose of Dexamethasone, and of course, got even worse.
It looked like an infection was coming on, so they did a whole battery of blood tests and workups. They couldn't find a thing that was wrong with her but decided to start the baby on antibiotics and transfuse her. This didn't make a whole lot of difference.
Meanwhile, she had her renal ultrasound (smaller yeast balls there, too) and eye exam (eyes are no worse, which can either mean that they are getting better or staying the same. Take your pick. Next eye exam next Tuesday). But she was not herself, and added irritability to the list of amorphous symptoms, and an even lower resting heartrate (now in the zone of cardiovascularly impressive triathletes). Sharon and I bugged the crap out of nurses, doctors, and others unfortunate enough to be in the vicinity of Hallie's isolette. We concocted all sorts of theories, including ones related to the baby's intolerance of her new meds (caffeine and dex).
We got back from dinner Tuesday night pretty worried. We weren't sure that the scheduled extubation was going to happen, or that it was a good idea that it happen. We were hovering around Hallie, concocting more theories when her doctor approached and said: "I have to tell you something." This made us quake with fear. He then proceeded to explain that they had overdosed her twice, that her nurse picked it up (thanks Suheila and David!) on Tuesday (perhaps provoked by our prodding? We like to think so), and that the baby would be extubated and hopefully there would be no negative long or short term side effects.
We were frightened, horrified, and yet relieved to have an explanation (at least she wasn't getting sick). We're still not sure what the long term impact will be, but the short term effects are wearing off (she is becoming less irritable, is no longer lethargic, and her heart rate is slowly creeping upwards). Her EKG and second ECHO were normal. And her breathing is good. We are worried about long term cognitive issues since the use of steroids is related to these, but most of the studies do not involve late administration and none involve 20 times overdoses (though there are some that involve 1 mg/kg in 24 hours---Hallie received double this in 12). We'll see, and report back.
Meanwhile, Hallie has now been off the vent since Tuesday night (61 hours, but who's counting?) and spent 7 of those on nasal canula (just oxygen flow, no pressure to keep open airwaves). She's crashed a few times, but mostly out of anxiety and irritability and not out of exhaustion. And she has found her voice, sounding something like a cross between a gremlin or a baby dragon and a small mouse. She's very cute, can totally lift and reposition her head, has scooched across her isolette, and is becoming more like her feisty self. Keep your fingers and toes crossed for Hallie's continued ability to stay off the vent. We'd really like to be done with that particular piece of equipment.
Also, she is now off of IVs---she's on an oral antifungicidal medicine and is taking her caffeine orally, too (not Starbucks, yet, alas, but still). And this is going to help make it easier to dress her up cutely (thanks Steve and Shelly---the cool clothes just arrived---and thanks Jan for the lovely outfits into which she shall soon fit).
So that's it for now. Mothers are exhausted, tense, anxious, and hopeful, and also anticipating that they are going to need to figure out how to go back to work in the next week or so. That's going to be a saga in and of itself.
September 3, 2006
Again, please forgive me for my failure to more regularly update you on our girl. It's been a hectic couple of weeks here in the Eble-Schrader world. The semester just started up (as many of you fine recipients know all too well) and we've had a bit of rollercoaster (but just a bit, really) activity with Hallie. All in all, though, it's been a pretty good couple of weeks for us and the baby and we're now beginning to see something that resembles the light at the end of the tunnel.
So, in no particular order, here's our milestones of the past couple of weeks (do forgive me if there is some repeat of info; I honestly cannot remember where I left off in this ongoing saga):
1. Breathing. After about a week on CPAP (where the baby does her breathing but a rush of oxygen at high pressure blows into her nose keeping her airway open---think breathing in a wind tunnel), Hallie had enough. She was getting quite a bit of that air in her belly and this was making her somewhat irritable. She let us all know that and her nurses and doctors decided that it was time to consider putting her back on nasal canula during her feeding periods (every 3 hours). Nasal canula is a lot less annoying---first, you don't have to gear up in spelunking suits to use it -- rather, all you have is a very fashionable clear plastic tube with nostril prongs to worry about. Second, the annoying pressure is gone since the canula just provides the baby with a flow of O2. This was much appreciated by Hallie, who proceeded to show us all that she wanted to stay on it, period, and not just during eating. So, for the past week, Hallie has been on canula. She still has crappy lungs and desats a bunch, but not quite so much as she used to and she is beginning to have more in the way of respiratory reserve. We're hoping that, as she grows, this reserve increases and, for the sake of her rapidly aging mothers and in an effort to minimize their need to color their hair, that she stops desatting at all at some point in the preferably near future.
2. Eating--part one. That's the way to get fat (or at least put on the ounces and build up the aforementioned reserve). Hallie is now being stuffed like a thanksgiving turkey. She is getting 32 ml (a bit under 1.25 ounces for those out there who are metrically challenged) every 3 hours, and Sharon's breast milk is being fortified doubly to 26 calories an ounce (breast milk is 20 calories an ounce, and each dose of fortifier adds another 3 calories). This is pretty much the max of fortification. Her doctor (Soraya Abassi, this three week period) is very keen on weight gain for all the aforementioned reasons (not to mention that babies do look a lot better with a bit of fat on them -- it hides all those gnarly veins and stuff that we don't normally see in your average full term kiddo). Hallie is pretty much at the bottom of the growth chart (below the 10th percentile, though not too much below that) and, while proportional, would benefit a whole lot by catching up (I see high calorie cooking in my future). After the steroid debacle and the switchover to canula, Hallie lost a bit of weight and was hovering around the 1450-1500 gram mark (that's 3 lbs 3 ounces--3 lbs 5 ounces). Since the rapid calorie enrichment program began, she's put on quite a bit of weight and now weighs 3 lbs 10 ounces (1643 grams, to be precise). We're hoping that this trend continues.
3. Eating--part two. AKA Refluxing. With eating comes refluxing. We all have it (and in some of us it's pretty bad; hence all the pepcid ac and nexium commericals). But if you have very little lung reserve, are lying down all the time, and have tons of breast milk pumped into you regularly and don't always have time imbetween feeds to process and eliminate said food (by pooping), you are going to reflux. This is even worse in BPD kids, who tend to have bronchial spasms. So our little miss thing has a bunch of reflux problems, and these are the primary culprits, we think, of her desatting and bradycardia (heart rate drift downward) episodes. There are drugs you can take for this but none of the meds are uncomplicated and so Hallie's docs are trying to treat it non-pharmacologically first (by putting her food on a pump, trying to boost up her oxygen pre-feeds, etc). Hopefully that will work. The one really simple way that you can deal with this (that may or may not work) is by adding rice cereal to her breast milk. However, this only works if you are bottle feeding the kiddo, and not tube feeding her. Which brings me to...
4. Eating--part three. Hallie has actually been bottle fed a bunch (as those of you who were able to open Sharon's picture attachments know). She took her first bottle last weekend (Sunday, to be precise) and she's been pretty much on a bottle or two a day since then. Bottle feeding is not something that comes naturally to us (though she seems to have the suck and swallow parts down pat). You have to take various precautions to ensure that the baby doesn't choke during the feed (either by getting too much milk in at once, having it end up in the wrong place etc). And feeding a three pounder (even a 3lb 10 ouncer) is a bit more challenging than feeding your average newborn. So this is a bit of a learning process for all of us. I have managed to get about 10 cc in her (a third of an ounce) rather slowly; Sharon has fed her an entire bottle once (Hallie was a champ that night) and since then has managed to get some in her, but with a bit more in the way of choking-desatting-bradying and other fun consequences. It seems to us that the angle of the bottle really matters, as does the question of whether she has pooped recently, as does the question of how tired Hallie is. So there's a lot that has to come together for there to be a good bottle feeding experience. But we're hoping that, as Hallie gets bigger and stronger and older, the problems will peel away and the whole feeding thing will come together. This, plus a bunch of practice sessions conducted by the mommies, should help a lot.
5. Biggest potential issue on the horizon: Hallie's eyes. Her ROP (retinopathy of prematurity) has gotten steadily, albeit for the most part slowly, worse over the past three weeks. She had what looked like the beginnings of Plus Disease (inflamed and twisted veins forming behind the retina that could pull it away and damage or blind her) last week. So the opthamologists will be back bright and early on Tuesday to check her again, and are planning, if they see what they expect they will see (in other words, if things really do get worse instead of better), Hallie will have laser surgery on Wednesday. We'll keep you posted, but do keep your fingers crossed that we can avoid this.
6. Biggest silly milestone: Hallie is now wearing footie pjs to bed. She has fewer labs and is beginning to fit more of her clothing. Hence, she is now dressing in super cute preemie clothes that actually look more like clothes than, say, a 2x2 gauze pad. She has blown through the seriously small gap preemie clothes I bought her, and through some of the duds purchased by Barbara, Shelly, and Steve. This is a great thing. She is definitely one of the best outfitted kids in the NICU and has the dubious honor of being the grand dame of the unit---she is the oldest baby at 85 days.
7. Aunt Laura's cool parties: we had a couple of them. First, there was the Hallie-has-been-off-the-ventilator-a-week party, which featured Air Heads candy, Blow Pops, Breath Savers and a bunch of other thematically appropriate junk food. Second, there was the Hallie's-first-bottle-party, which featured the cutest ever baby bottle favors chock full with baby-colored M&Ms. Both were a great big hit. Hallie has definitely had more parties than your average preemie!
That's all for now; I will try to attach a picture below and send apologies in advance to all of my mac-challenged readers out there.
September 19, 2006
too late in the night for a real update. but let's just say this: no eye surgery yet; bottling is intermittent; and the baby is getting bigger. current weight: 4lbs 9 oz. but some of that is water weight.
hopefully you can open the attached photos. the first is taken in the scale (she loves hanging out in the scale for some reason) and the second is a picture of hallie with her new gund personalized plushy bear from her very good friend steve.
October 13, 2006
Sorry about the utter and complete silence on our front. First, my
hard drive fried itself (quite literally--going out with what sounded
like a car taking a turn on two wheels, followed by a charming
grinding glass sound) and I lost everyone's email address (happily
not my research--though god knows when I might get back to that--or
most of my scintillating powerpoint presentations). I did manage to
reconstruct things (I believe) based on the emails stored up on my
home laptop (makes having two laptops seem like a necessity, not a
luxury). Anyway, it took a while to reconstitute said list (and now
add to it a huge number of ICN related folks--welcome all!) because
things moved rather rapidly with Miss Hallie Rose's discharge.
This long story was told by me (in the active voice, not passive, for
you grammar mavens out there) at GREAT length yesterday. That was
before I lost said update to the ether-world. I am not sure where
things like long email updates go, but rest assured that they go the
way of bic pens, half of sock pairs, and everything else I have ever
managed to lose (like my keys, repeatedly).
I have zero energy to write at great length today, but suffice it to
say: HALLIE IS HOME.
The bare minimum of details: she arrived home at 3pm on Tuesday
October 10, 2006, one day shy of her 4 month birthday. Her arrival
weight was 5 lbs. 13 ounces (2644 grams) and her length was 19.25
inches (49 cm). She is finally back on the growth chart (on it for
the first time, really) at 25th percentile for height and head
circumference, and about 10-15% for weight. Hence, she is the envy
of large and small (and especially her mama, who always wanted to be
tall and skinny).
Hallie is home on oxygen and a couple of monitors, which add a new
level of complication to our lives. The oxygen is basically fine,
but the monitor is annoying as hell. I got to the point where I
essentially tuned out the hospital monitors (really, I did...) but
this one is loud as hell (the muffler I attached---a buckwheat
pillow--helps some) and doesn't signal us about much of anything
except for continual loose leads. Hence, it contains a huge 'boy who
cried wolf' potential, which sort of sucks.
Otherwise: Hallie is doing pretty well. She has been eating okay
and sleeping so-so, and other than the fact that she is not pooping
terribly easily (yes, I have turned into ONE OF THOSE PARENTS), she
seems relatively fine, even if she is taking some adjusting to her
new environment (for one, it lacks the hilarity of life during the
night shift, and Hallie seems---quite reasonably, really--to prefer a
noisy sleeping environment to a silent one). Her moms are also
hanging in there, albeit in a hazy, sleep deprived sort of way. And
Hallie's dance card is filling up really quickly: she already has
two appointments and (hopefully, since this was supposed to happen
this week and did not) a home nursing visit for next week, and one
appointment for the following week. I'm thinking of investing in
large quantities of upscale Levengers' agendas so that we can keep
adequate track of Hallie's daily schedule. It's definitely more
robust than my own.
Anyway, for your visual enjoyment, I am attaching a couple of recent
photos of Hallie Rose in her new home. And apologies to any and all
of you who find it hard to open these---I know I should be blogging
all of this...
NOTE: The pictures here are already on the blog!!!!
Pardon the long silence. I have no good excuses now that we're all snuggled up at home. But somehow, three weeks really got away from me.
It's hard to believe that Hallie has been home for three weeks already, or that her one-month-corrected birthday (November 3rd) is upon us. Having Hallie home has been wonderful and we're really thrilled to be able to get to know her in her own environment (not that the ICN wasn't cozy, and not that we don't miss all of our friends there; it's just that our couch, glider, and futon are a *bit* more comfy than some of the rockers. Not to mention the fact that we're not too upset that we aren't in an environment where monitors alarm all the time).
Over the past three weeks, Hallie has changed quite a bit. First, she's grown quite a bit. As you probably recall, she came home a (what we then thought of as hefty) 5 lbs. 13 ounces. Now, we're not a hundred percent sure what she ways right this second, but as of her last pediatrician's appointment a week ago today, she was a whopping 7 lbs. My sense is that she's probably put on another half dozen or so or more ounces. We'll know for sure on Friday, and I'll update folks about this in my next dispatch. Hallie has also gotten quite a bit longer and her head has grown. Needless to say, she is growing out of her clothes left and right---something we are really ecstatic about.
Much of this exponential growth is related to the fact that Hallie is eating a whole lot better. This was not something that we were sure would happen: the formula on which she came home (Enfamil AR) was deemed by her pediatrician to have too few nutrients, so he transitioned her to a preemie formula (Neosure) that a. made her constipated (sorry about the too-much-info aspect of this update) and b. that she hated and refused to eat. So she ended up taking much less in the way of food (2 ounces instead of 3 or 4) and fussing a lot during the entire process. The pediatrician then switched her over to another formula for babies who have milk protein allergies. She wasn't fond of that one either. So, after purchasing every kind of formula and most brands of bottles (the baby industry adores us, naturally), we switched her back to her old favorite, Enfamil AR and--guess what?--she started eating again, like a champ. She's been known to occasionally take as much as 5 ounces, though 3 ounces every 4 hours is still her norm. So, once again, Hallie lets us know what she wants, and we are happy to give it to her. I might feel more ambivalent about a headstrong adolescent, but I am really thrilled that she is as stubborn as she is and that she so clearly expresses her likes and dislikes.
In addition to being to the pediatrician twice, Hallie has also visited a pulmonologist, who thought that, all things considered, her lungs were pretty clear. There was no fluid building up, and she has pretty low oxygen requirements. So, even though she will probably be on oxygen and a bronchodilator and some other stuff for her lungs for quite some time yet, she is doing remarkably well in terms of her lungs.
Hallie's eyes are also doing well. The pediatric opthamologist couldn't even detect her retinopathy anymore. So Hallie just needs to have one more check up in a month, and then, if all is going well, she doesn't have to go back to the eye doctor for another six months or so. At that point they'll be able to tell if she is excessively near-sighted and needs glasses.
In terms of her seeing, I will say this: she seems to be focusing much more on things, and on us. Her attention span is still quite limited, but she does seem to recognize us. She's not smiling socially yet, but we are hoping that this happens soon.
Hallie is also playing with her toys on her exercise mat. She enjoys tummy time and has really remarkable head control (she even held her head up by herself for about five minutes. All of the doctors and physical therapists are quite impressed with this. And so are we.
Hallie has her first real physical therapy session on Monday and everyone is looking forward to it. I will provide details of how she does in my next update.
Anyway, I just wanted to end by saying that Hallie has had a pretty active social calendar given that she is a preemie who cannot really go out. She has met all of her cousins now, and they all are really attached to her. Aunt Laura and the kids--Sarah (13), Megan (11), Hannah (3) and Adam (21 months) all came down last Thursday to hang out with Hallie and eat pizza. Hannah was thrilled to meet her little cousin, and Adam was far more interested in Hallie than anyone thought he would be---he was at least as interested in her as in the electric broom that he dragged around the house on his own when he was here! And, on top of this, Hallie participated in a limited way in the Hallie-ween festivities yesterday. While she has a ways to go before she trick-or-treats, we had her all decked out in her dragon costume (that will most decidedly NOT fit her next year) and out in front of the house in her stroller while we distributed handfuls of candy to the approximately 100 trick or treaters who stopped by. Scroll down for a whole bunch of really cute Hallie photos, including several in her baby dragon outfit.
I think that's all. Since I am nodding off in my characteristically sleep-deprived way, I will end here and will try to do better about getting updates out in a more timely manner next time.
Abby, Sharon and Hallie
November 11, 2006
Hallie had a great time with her tummy time tonight and I had fun
playing with the sports setting on the digital camera---apparently,
batting toys qualifies as a sport. Anyway, most of the time Hallie
played with her toys (while on her back) and tried to climb a
mountain (a boppy pillow) while on her tummy. She got a bit
frustrated because she couldn't quite manage to crawl yet, but she
did push herself over the top of the boppy pretty effectively and was
kicking up a storm and using both of her arms and legs to leverage
her rather large (in proportion to the rest of Hallie) head.
Hallie is now about 8 lbs. (she was 7 lbs., 11 oz. on Wednesday).
She's on an extra super duper fortified Enfamil AR (the prepared
liquid with some added powder to up the calories while keeping the
volume down so that she doesn't end up getting overly full and
spilling out the top--a nice way of saying 'barfing'). She's doing
well on this program so far, so we hope that, by the time we go back
to the pediatrician (amazingly they gave us a whole WEEK off--so
we're not back there until the day before thanksgiving), she'll have
packed on the pounds. They'd like her to gain at least an ounce and
a half a day, which seems like a lot, but it really will help her
catch up weight-wise. She is still a peanut, but a rather amazing,
miraculous one. Aunt Laura (who visited last night) said that it's
weird to look at Hallie because she acts like a two or three month
old but looks like a newborn. That sums it up rather well.
Hallie has reached a few more milestones this past week. First, her
cowardly mommies finally bit the bullet and tried out the tub bath
thing. As some of you might recall (especially you lovely ICN folks
who might have witnessed this event), the first tub bath did not go
over particularly well with Hallie. Now, we're not talking about her
turning blue or anything like that (happily, she seems to have given
up that trick and hopefully this relinquishing of become cyanotic is
permanent) but she did melt down, and we melted down along with her.
So we were consigned to wash clothes (and only a few times have we
turned desperately to baby wipes when we were literally wiped out and
could handle nothing more sophisticated than that). But the kid has
begun to develop a few fat rolls, and these are really great for
hiding lint and other unidentifiable dirt. When Sharon started
having to floss Hallie's toes, we knew that it was time for us to try
the tub bath routine again. So we got out Aunt Laura's trusty tub,
filled it up in the bathroom, dragged it over to Hallie's changing
table (which she loves since it reminds her of the scale at the ICN---
more on this later) and put the sling into it, and the baby into the
sling. Now the sling is key: it provided Hallie with boundaries.
And guess what? She loved it. She couldn't hold onto her towel
turban, but she did well otherwise, and we have the pictures to prove
it (scroll down for pics).
This morning, though, we hit a real milestone: Hallie started to
giggle and grin. Mommy (Sharon) was changing her and began to tease
her by doing raspberries on her tummy and telling Hallie she was
going to eat her up, and Hallie responded by smiling, cooing, and
laughing. Later on, I tried the routine, and began to mimic Hallie's
cute noises (there is much to mimic there) and she responded by
giggling and smiling. Needless to say, she now gets her diaper
changed about double the number of times per day than previously and
we have decided to buy a large amount of stock in Pampers.
Anyway, I leave you with some of our favorites pictures, and a
promise to update you soon.
November 29, 2006
It's relatively late, so this will be short, but I didn't want too
long to pass before writing our (admittedly already belated)
Thanksgiving update. There's so much to be thankful for this year,
even though it was a very, very difficult year in so many ways. And
it just seemed wrong not to acknowledge this even though holidays are
pretty artificial constructs and, when it comes right down to it,
every day should be a thanksgiving day.
First the stats: At the last weigh-in (last Wednesday), Hallie was a
whopping 8 lbs. 14.5 ounces. This means that she put on over 20
ounces in a two week period, which I think we all owe to the new
concoction we are (force) feeding her. This is a fine combo of
Enfamil AR ready-to-feed, Enfamil AR powder, breast milk, and a nice
dash of Karo syrup. Weird as it is, it seems to do the trick. And
the kid likes it, even though no one can really accuse of her eating
quickly. Nevertheless, the very idea that Hallie is not only on the
chart, but actually at the 25th percentile for weight, is thrilling.
Her pediatrician was so thrilled at this that he tapered off our
visits---now, we're beginning to transition to monthly check-ups, and
not weekly ones. Of course, we can always bring her in for a weight
check whenever we wish. And we'll be visiting his office a whole lot
to get RSV shots and other immunizations. I suspect we'll still end
up in West Philly at least once a week, but that's a whole lot better
than three days a week.
Hallie has also started playing more and more each day---she
especially enjoys kicking at her suspended ball and giraffe while on
her play mat. I think she does this to advance her kickboxing
skills, which she now uses liberally on us if we don't shove the
bottle in her mouth quite quickly enough. As much as it hurts when
she gets me in the kisser, I take this all as a pretty good sign.
We are also thrilled that she is smiling a whole lot more, and
sometimes even giggling. (see attached bath photo)
And Hallie has hit other ever-important milestones like wearing her
first jeans (last Tuesday, after spitting up on an adorable pants
outfit she had been dressed in earlier in the day), graduating out of
the newborn size (mostly) and into the 3-6 month range, and spending
her first night off of oxygen.
Now this last milestone was sort of a mistake: we had her downstairs
in the living room hooked up to the oxygen tank, and moved her up to
her bedroom at around 2am last Monday night. She had a nice night,
and woke up all cheerful for her visit with her friend Ellen. This
was followed up by a play therapy session, half of which was spent
snoozing over a bottle. Anyway, in the middle of her therapy
session, the Oxygen delivery guy came by to replace the tank
upstairs, and when he went to do so, noticed that the oxygen tank had
not been turned on. This was at once scary and exhilirating: scary
for all of the obvious reasons, and exhilirating because we knew that
the oxygen wasn't a requirement for her, so much as it was something
that functions to help make it easier for her to grow. Hopefully, by
the time we see the Ear Nose and Throat guy, we'll have even more to
Anyway, I am going to end this here since I have a bunch of chores to
do before collapsing and getting up to teach tomorrow.
But here are some of Hallie's latest pics:
December 16, 2006
This is going to be the briefest of updates because I can hear Hallie
beginning to stir in her crib; no doubt she is ready for yet another
First, Hallie got to explore heretofore unknown regions this week.
The first new environment was our third floor. Up until now, we've
kept her on the first two floors because that's where we have the
oxygen set up. We do have portable tanks but we pretty much just use
them for going to the (large number of) doctors. But, since I am
pretty confident in Hallie's ability to breathe on her own, I decided
it would be nice to surprise Sharon with a wake-up visit from Hallie
on Monday morning. So we set out for the bedroom as soon as I heard
Sharon's alarm go off (at around 6:40am) on Monday. Hallie looked
around with wide-eyed wonderment and was very happy to see her
mommy. She was just as happy to make the acquaintance of the bed (I
know I would be!). She immediately took to rocking back and forth on
her back and making all sorts of cooing noises and smiley faces.
This gave Hallie all sorts of ideas for her weekly agenda. To be
brief--Hallie realized she could move around a lot and that she had
the potential to contemplate the big roll over from back to front
while she was in bed with mommy. And this led me to think that she
needed to acquaint herself in a more serious way with a second nearly-
new environment: her crib. This lovely (yet underused) item of
furniture gives her just enough room to practice her new moves.
And today--drumroll please--Hallie figured it all out. She rolled
from back to front at least three times (including once when her
Special Instructor was here). Go Hallie.
Alas, I must go now since our little princess is melting down. But I
leave you with this photo as evidence of her big move. As all of you
know, given SIDS precautions, we wouldn't put her on her belly in the
crib. She got there herself. (the angle of the photo is a bit odd,
but imagine yourself staring down at her crib).
Love and happy holidays everyone!