I know I’ve missed writing about some important events, like the anniversary of Gwyn’s homecoming on the 24th of November, or his first Thanksgiving with family, or his first Christmas with family, or all of the myriad other little “firsts” that happen over two months with a baby …
But, you see, here’s the thing. We’ve been reorganizing our house, and turning Gwyn’s nursery into a guest room/office. Gwyn never uses it, since he sleeps with us at night, and so the space was really not being used for anything except the closet. So, we decided to make a nice big playroom out of what was the office/den/room-we-shoved-all-our-stuff-in-when-we-moved-here-in-2008, and turn his “nursery” into a little guest room and office blend.
There’s no Internet plug-in-thingy in the new guest room, though, so Kent (Grandgeek, to Peter) volunteered quite sweetly to make our desktop computer wireless. It was sweet, generous, and lovely, and so we unplugged the desktop computer and brought it with us to our big family Thanksgiving celebration in Washington DC. I figured that I’d be able to write a slightly-late update about Thanksgiving, complete with pictures, on our lovely fast wireless desktop computer…
UNTIL IT EXPLODED.
Literally. Sparks and EVERYTHING. As soon as we got it home and plugged it in. I’m sure Alanis Morisette would say it’s ironic, but I’m pretty sure it just sucks. I just hope the pictures are intact (although they are thankfully backed up on two computers - we aren’t taking any chances, especially with the ones from the NICU.).
So, until we get that repaired, I have to write updates on the laptop computer, and it’s mighty old and mighty slow. Unfortunately for Apple, it’s my first experience using a Mac as my primary computer. Kevin says it’s not typical of what Macs can usually do (again, it’s a mighty old laptop), but it takes five freaking minutes PER PICTURE just to RESIZE IT. I’m embarrassed to say how long it takes to upload it to the website once it’s resized, and, honestly, that’s something that I don’t have a ton of time for with this business going on at our house:
So, long excuse short, I don’t really have a computer right now that’s fit for long picture updates. I’ll try to do more text ones, and we’ll get the computer into the mail to the Baker Home for Critically Ill Electronics. Hopefully, Sparky McDesktop should be fixed soon and put into the lovely guest room where he belongs, bringing you extensive updates with pictures. And bringing me Netflix Instant View so that I can watch 30 Rock again. Hopefully.
We had our EI “evaluation” a couple of weeks ago. It was just fine, and we really liked the people who came out - C, our services coordinator, and M, the nurse who runs the developmental tests. At the evaluation, M found that Gwyn is actually just fine chronologically in gross motor skills - he’s learning to walk, crawling and climbing well, and quite strong! His fine motor and language skills - which go hand in hand - were developmentally behind his gross motor skills. Since babies often have growth spurts in one area, then have a growth spurt in another, this wasn’t surprising, and not worrisome at all.
Now that he’s crawling all over the place, though, I thought it would be great to have a teacher come in and show me some new games to play with him, so that we could enjoy each other more in this new developmental stage. So, that was our plan - a teacher, specializing in fine motor skills, would come out twice a month to teach us new games and fun ways to help Gwyn’s development.
The teacher, E, came out for the first time a few days ago. With her came K, a physical therapist. While playing with him, K determined that Gwyn didn’t need fine motor skills therapy, but needed occupational therapy - that his tendons and muscles were supposedly somewhat tight, which would affect his ability to walk and balance normally. What she saw was “very subtle,” but she said that it merited having an occupational therapist, and that his balance would be adversely effected until we “fixed it.”
As it turned out, K wasn’t even supposed to BE here that day. She “tagged along,” then gave an opinion - based, again, on a very brief assessment - which totally changed the course of what we thought were doing. And, as a result, I feel (once again!) like I have no clue what’s going on, like I shouldn’t listen to my intuition that Gwyn is fine. It’s yet another “expert” telling me blithely that something different is wrong, which I need to fix or I’m failing my child.
I’m most upset because EI was supposed to be an addition to our everyday life, and not supposed to impact our relationship. The way I understood EI was that Kevin and I would remain the experts on Gwyn. We would incorporate new kinds of play, or new kinds of stretches, into our day, but that would be the extent of it. Instead, I find myself going, “Is that normal? Is that normal?” about every behavior Gwyn exhibits. I’m analyzing his behavior instead of celebrating it. It’s an unwelcome element, and I’m not willing to let that attitude color my relationship with my son through his babyhood.
We have another meeting with C, our services coordinator, tomorrow. Hopefully she can tell us why K came in the first place, if she wasn’t authorized to. We also want to know what this means for the two hour evaluation that we went through when beginning with the program. Can its findings really be overturned by a physical therapist with half an hour to kill and no compunction about being “invited” somewhere? If so, what’s the point? How can we trust that the course we’re taking is the right one, if every “expert” they’re affiliated with has a different opinion on what the right course is?
Needless to say, it’s incredibly frustrating. I don’t like feeling unsure about the treatment that we may or may not give Gwyn, especially when I happen to think his balance is just fine:
His love for the kitties is also doing quite well.
Here at the Baker-Ewert household, September has flown by. Suddenly autumn is here. The leaves are changing outside, we’re wearing more layers inside, and Peter Gwydion is a year old! Here is a whirlwind tour of the major highlights of our September 2009:
Birthday Boy!
Peter’s first birthday was September 18! We celebrated that weekend with cupcakes, family and friends. Gwyn immediately went to sleep - I think being the Guest of Honor was a bit much pressure for him.
Cupcakes have nothing over the flavor of nursie milk, apparently…
He also got a lovely long visit (and walk!) with Aunt Lori, Mimi and Grandma afterwards, which he liked quite a lot.
Being pushed by Aunt Lori
Walking with Aunt Lori, Mimi and Grandma
The Outdoorsman in his natural environment (and new birthday hat, which we LOVE).
Snuggles with Mimi
Developmental Clinic visit and Early Intervention
The Monday after Peter’s birthday, Momma and Peter made the trip to Du Bois to visit the Developmental Clinic. It was a long, tearful journey for both of us. Peter has maintained his firm anti-car stance, which makes an hour and a half trip seem much, much longer. The visit to the clinic itself was frankly disappointing. After a much shorter evaluation than we were expecting, their diagnosis was that Peter showed significant developmental delay, which seemed incorrect and was really upsetting! We were referred to the Early Intervention program, whose services we had actually declined when we first came home with Peter. No one at the clinic, though, could tell me exactly what Early Intervention would do when we contacted them (except that they’d do another evaluation - wow, sounds helpful!). They did tell us that Peter would definitely be admitted to the program because he was an early bird, and in their assessment Early Intervention doesn’t adjust his age for his prematurity. Typically, in an evaluation of a premature baby’s development, you have their “chronological age,” which is calculated from their actual birthday (September 18) and “gestational age,” calculated from their due date (December 13). Obviously, you wouldn’t expect a nine month old to be doing the same things that you would from a baby who is a year old, so it’s useful to remember that developmentally Peter is nine months old, although the calendar says he’s a year. We know. It’s confusing. What was more confusing was what would be useful about Early Intervention, if they weren’t going to make this adjustment - without it, he is guaranteed to show “delay.”
After some consultation between Daddy and Momma, we decided a phone call couldn’t hurt to get some information about Early Intervention in their own words. Surprisingly, though, given our expectations from the lack of information at the Clinic, the phone call was very helpful! The program is very family centered - they are as involved, or not involved, as you want them to be. We learned that the reason Early Intervention doesn’t adjust their expectations for prematurity is because the entire purpose of the program is to get premature babies’ development caught up to their chronological age faster. During an evaluation of his skills, though, parents are active participants, and let know where his development is at. So, although he’s a year old, knowing that his development is on track for his adjusted age is reassuring for us and shows there’s no problem. Knowing a few new games to play, though, that will help his chronological age be the same as his gestational age faster certainly won’t hurt!
Since the phone call went well, we scheduled a meeting with a representative of Early Intervention. During the meeting, which happened at home, we filled out a preliminary questionnaire about Peter’s current state of development and found that he is perfect for his gestational age. While I take some issue with the idea of quantifying development in a checklist and then scoring it, his “score” landed him squarely between eight months and a year developmentally, which is perfect (and a far cry from the six months that we were told at the Clinic in Du Bois). Since EI services are free and low-pressure, though, we are continuing on with them to help Peter get caught up to his chronological age faster. Nothing wrong with giving our boy a bit of a head start - although lately he’s showing us that he really doesn’t need it (turn your volume down, because the first noise is a rather high-pitched Mommy voice):
Yeah. He can crawl all over the house now, and loves to walk while holding Mom or Dad’s hands. He also looks for hidden objects, puts everything in his mouth, and bangs toys on the table. He’s experimenting with lots of noises, although “mama” is still the favorite. Developmental delays, my tuckus.
Healing and moving forward (but not “moving on”)
We are still in the middle of doing lots of healing and processing. While we were in Du Bois, Gwyn and I went to visit the NICU. It’s so nice to see our friends there, but this visit was obviously imbued with special significance. Kim and Laurie - the nurses who were there when Gwyn was born - were there for a snuggle, and Dr. Hassan even gave us a small present (because Peter is obviously his favorite baby he’s ever taken care of…I don’t know how he’d feel about me saying that, though..). There is something inherently comforting about being with the people who know as well as I do the path that we walked to get where we are today. We don’t need to say anything about how small he was, or how incredible he is, because I know they see him through the same eyes that I do. I’m sure the image of the two pound twenty-eight-weeker is as strong in their minds as it is in mine, and I know they’re as proud of him as I am. It’s an amazing thing to share.
As we were leaving, we ran into a couple who was coming in to see their daughters. Gwyn smiled at them, and I told them a little about his birth and our journey through the NICU. I hope it helped them to know that things would work out the way it would help me a year ago to meet babies who were NICU veterans. On the way home, while I thought how much he’s been through, I cried quite a bit. The NICU and our experience there is going to continue to be a huge part of our lives for years to come, and that’s okay. I just hope they continue to be okay with us visiting.
Impossibly, in two weeks Peter Gwydion will be one year old. Emotions are running high right now.
I still feel acute pangs of jealousy and frustration when encountering pregnant women, or when parents talk about their “next baby” with certainty and without a second thought. They know that they will have another pregnancy, and feel totally confident that it will be as uneventful as the first, resulting in a healthy term baby. I am envious of their total confidence that sore backs, swollen feet and vaginal birth - the natural consequences of a healthy pregnancy - will be the biggest trials they face. I am frustrated by their discussions of these “hardships,” while they remain blissfully unaware of what it feels like to watch your tiny baby struggle for his life and feel it’s your fault for selfishly bringing him into a world that, for him, was full of hardship from the very moment he was born.
Recently, the New York Times ran an article discussing the lasting sorrow that parents of NICU babies experience. The emotions surrounding having an extremely premature infant have been likened by some experts to losing a child. We lost the healthy newborn that we expected and the home birth we dreamed of. We lost ubiquitous rites of passage that were important to us, like taking pregnancy photos, attending childbirth classes and a normal baby shower - one where I was pregnant with a big, gorgeous belly, excited about feathering a soft nest for my beautiful child to land in.
I know that ultimately our experience is much richer than the norm. There is not a single day where I take Gwyn, or his good health, for granted. Lately “amazed” doesn’t begin to describe my feelings as I look at him pulling up on the furniture, babbling and getting ready to crawl. It seems impossible that he’s the same baby who was so tiny that I held his whole body in one hand, carefully placed to avoid all of the wires and IV’s he was hooked up to. I am grateful in a way that only NICU mothers can understand for every little thing, because the little things represent so many problems we miraculously avoided. He laughs at a silly face Daddy makes, and I am often grateful that the oxygen he required didn’t make him blind. He bounces in his jumper, I am grateful that he doesn’t have cerebral palsy and will be able to walk normally. He wets three diapers in half an hour, I am grateful that vancomycin didn’t destroy his kidneys. All of this factors into our daily life together, and unless Lacuna Inc. opens a Bradford office, the memory of Gwyn’s babyhood will include ventilators, antibiotics and blood transfusions as well as nursing, naps and diapers.
So, as I consider the anniversary of his very early birth, I am joyous and proud. I’m so grateful for my now-healthy baby - but I am far from “over it.”
Squeezing an update in while Gwyn is (finally) asleep!
The past few weeks have seen us busy, busy, busy doing the parenting equivalent of treading water. Gwyn is doing so much learning and growing! He can:
Bounce and bounce and bounce. He’ll try to bounce while being held in someone’s arms. He loves the Jump-Jump (is it actually called a Jumparoo?) that we’re borrowing from Cousin Soren.
Pull himself up while holding hands. This is actually the optimal position for bouncing. He has yet to pull himself up on any furniture, though. Probably this is because we try to keep him in wide open spaces, because he can…
Rock on hands and knees! While he’s been doing this on and off for a little while now, he’s become quite proficient at it. It’s led to a tendancy to…
Lunge for objects that are close to within reach while rocking on hands and knees. Typically, this particular action results in a bonk on the head. We think a few bonks are a major part of childhood and figuring out Newton’s apple-inspired theories, but we want to make sure those bonks are happening on a softer surface than tile. Our thick wool carpet in the living room has been perfect for it, but it means that someone needs to be within reach at all times - no more sitting him in the Boppy and making dinner! Last time this was attempted, I looked over from the kitchen to see Gwyn trying desperately to…
Love on the kitties. Oh, does he love the kitties. He hasn’t figured out gentle petting very well on his own yet, so we hold hands so that he can stroke the kitties in a way that both he and our feline companions find enjoyable. Kinski tries to steer clear, but Mikka is so desperate for love these days - he really misses sleeping in our bed, which he can’t do since Gwyn is there - that he’ll try to get it from any source. He actually will come and rub his head on Gwyn’s hand sometimes.
Say “mamama,” and a few other sounds at varying volumes. He’ll whisper while he’s nursing, and is doing more vocalizing at “normal” volumes than shrieks. He’s still a fan of what I call the “groar” - something between a grunt and a roar.
Actually play with toys - and by “actually play with,” I mostly mean “chew on.” Since everything goes in his mouth, we did some research and found a few safe natural toys for him to “nom on.” Teeth may make an appearance at some point, but premature babies sometimes teethe late, even for their adjusted age. It’s not a problem as long as the teeth are there, which they are, but still under his gums. Since food is still for fun and Gwyn is still pretty much exclusively breast fed, his gums can stay chomper-less for as long as they please.
His sleep patterns are also changing remarkably, with some gentle prodding on our end. When we first brought him home, Gwyn slept easily, like any other newborn. Now there’s playing to do, kitties to love on, and the nursies don’t send him to the Land of Nod so easily anymore. A book we really like points out that he does still need a good chunk of sleep (~ 3 hours, ideally in two 1.5 hour naps) during the day as well as 10 - 11 hours at night, which we realized he wasn’t getting. Overtired babies, funnily enough, have an even harder time going to sleep…so we’re trying to fix that. To make it easier on everyone, we’ve been trying to feel out his natural sleeping habits. It seems like his biological alarm clock is set to go to sleep at 7 in the evening, and then wake up at 6 in the morning. While this isn’t Kevin or my favorite time of day, it’s a perfectly reasonable time for normal human beings, and so more of what needs to be adjusted is our attitude than Gwyn’s sleep patterns.
Seriously, though. Six in the freaking morning. Most of my six a.m. parenting consists of saying, “Mmmhm! Bay-bee! Boy, you’re strong!” and letting him entertain himself while I watch. While I watch sleepily.
Now. Be honest. Have you read any of that, or scrolled immediately down upon seeing that this post was tagged “video?” Yeah, I thought so. I forgive you, because I’m pretty excited too. We’ve set up a YouTube account so we can upload and share the short videos that we’ve taken with our small camera. Lights! Cameras! Fu-ture tech-no-lo-gy!
Cupcakes have nothing over the flavor of nursie milk, apparently…
Being pushed by Aunt Lori
Walking with Aunt Lori, Mimi and Grandma
The Outdoorsman in his natural environment (and new birthday hat, which we LOVE).
Snuggles with Mimi
