26
Sep

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.

imgp7832-medium

imgp7834-medium

imgp7848-medium

imgp7851-medium

imgp7855-medium

imgp7857-medium

imgp7861-mediumCupcakes have nothing over the flavor of nursie milk, apparently…

imgp7862-medium

imgp7868-medium

imgp7866-medium

He also got a lovely long visit (and walk!) with Aunt Lori, Mimi and Grandma afterwards, which he liked quite a lot.

imgp7881-mediumBeing pushed by Aunt Lori

imgp7885-mediumWalking with Aunt Lori, Mimi and Grandma

imgp7889-mediumThe Outdoorsman in his natural environment (and new birthday hat, which we LOVE).

imgp7891-mediumSnuggles with Mimi

imgp7895-medium

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.

05
Sep

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.”

Wearing the CPAP a week after birth

Wearing the CPAP a week after birth

20
Apr

Happy (slightly belated) seven month birthday!

You change so slightly every single day that I can’t believe what a different baby you are from week to week.  I’m so lucky that I get to see you grow bit by bit - all the way up to thirteen pounds, six ounces today at the pediatrician.

This month was a big one!  You got to meet your Grandma and Grandpa Ewert and took your first long car trip on a ride to Philadelphia to see Mimi and Grandgeek.  (Side note: While we were visiting, I got you a pink tie-dyed outfit, and I think it’s super cool.)   Through all of this, Daddy and I got to enjoy what a wonderful, calm fellow you are.  Your favorite pastimes - nursing and smiling - don’t seem to change, no matter where you’re at.  I hope it means that you really do feel safe when we’re around, no matter what your other surroundings are!

You’ve learned so much.  You finally rolled all the way over after about a month of going three quarters of the way, but seemed totally unimpressed with this new development.  You seem much more excited to be able to laugh at things that are uproariously funny, like when I turn you into an airplane on my knees.  You also are noticing smaller things, like the embroidery on a shirt, the whiskers on the cat, and the zipper on your sleeping gown (which you’re playing with right now!).  One of your favorite new pastimes is watching Momma’s wedding rings sparkle.  I love to watch you quietly observe and take all of this big world in.

Tomorrow we’re leaving for another big trip down to Durham, North Carolina, where Daddy is directing a play.  I’m so excited to share our visit with you.  There will be lovely trails for walking on while wrapped in the sling, lots of fabulous people to meet, and maybe a Momma/Baby yoga class to take together.  There really is such a lot of world for your big blue eyes to see, and I’m so in love with watching you learn.

I love you,

Momma

18
Jan

Happy four month birthday!

I am so proud of the way you’ve learned how to nurse this month.  It’s been really nice to not have to wake up to make bottles!  My favorite part of nursing you is how much you talk while you eat - I think that it’s going to be a while before I’m upset with you for talking with your mouth full.

I am amazed at how interested you are in the world around you.  I love to hold you on my lap while you study my face with your beautiful big blue eyes (lucky, looks like you inherited them from your Daddy!).  For your birthday, Daddy and I got you a black and white “nursing necklace” so you have something to examine closely while you eat.

Thank you for your patience when I have to put you down for a few minutes.  I’m so glad you like to be snuggled so closely.  After only being able to cuddle for a few hours a day at the NICU, I love to hold you as much as you like to be held.  I’m glad that you like the baby sling as much as I do!

Thank you also for telling us when you’ve had enough and are ready for bed at night, when you are hungry, and when you just want to talk.  It’s so nice to be able to give you what makes you so happy, whether that is sleep or bima or just snuggling with me and Daddy.   

I am so lucky that you are my baby and I get to watch how much you grow day by day.  Even as in love as I am with this past month, I’m so excited to see what the next one brings.

I love you,

Momma