When the First Baby Laughed

Laughter can cure all that ails you. Laughter cures fear and mends broken hearts. Laughter lifts your spirit and shakes off despair. Laughter gives you strength through pain, and celebrates your heart. A child’s laugh is a diamond that cuts through all trouble and gives hope for the future.
Ondine laughed today.  And The day before. and will again tomorrow. Weather  it was the funny faces we made, or that we elicited joy from her tiny form, she laughed.

Each day is unique, some good some bad. Somehow that small laugh made all our struggles vanish. That small laugh restored hope on a weary soul.
“When the first baby laughed for the first time, the laugh broke into a thousand pieces, and they all went skipping about. And that was the beginning of faeries.”  I’d like to think the first laugh for each child becomes a faery. for how else do you explain the magic laughter of a child.

Counting Down the Days to See Her Smile

Most of the time, Ondine is so chill that everyone compliments me on how lucky I am. I protest that I’m just proactive in attending to her needs so she seems more chill. But the medical team seems to think so too so maybe I am that lucky. We are 50 days out from surgery and it feels like we’ve come a long way. But the journey is far from over.

Every week since she was 2 weeks old we have taken Ondine in for molding. Molding of her lip, now molding of her nose. Every week we adjust the device. Somedays she cries, somedays she sleeps right through. Today we added a piece of tape to press down the middle section of her lip just bellow the nose. She didn’t cry, she screamed.

Maybe she was hungry, maybe she was upset that it’s hot in Seattle and we don’t have AC. Maybe she was hurt by the device and couldn’t express it any other way. But she screamed. She screamed when she was on the exam table, she screamed in my arms, she screamed until she was exhausted and a cuddle on my chest seemed to dissipate it for a minute.

The doctors see her every week and comment on her progress. They’re great doctors. So kind and helpful. Anything I could need and they are there for me. But they aren’t the ones who have to put the tape on her cheeks. They aren’t the ones who take a wet cotton-swab to rub away adhesive so you can change the tapes on her device so she doesn’t accidentally swallow pieces. They aren’t the one who has to swaddle Ondine because she’s too strong and jerks so violently away from the tape that the threat of damaging her eyes is very real. I am. I am the mean person who tortures her and she looks at me with big wet eyes that ask one question: Why?

I’ve had to get creative to help expedite the process, otherwise I break down in tears myself and have to walk away for a moment.. I created a portable medical kit out of a diaper wipe container that goes wherever Ondine goes now. It’s more of a stock pile in case she rips tape off her face, which she does any time she’s angry.

I’m blessed that she has started to pacify herself with her fingers by sucking on her hand. The thumb-sucking doesn’t work because the device is in the way. She tried at the docs office today but it just wasn't the same. It took her until she had nearly cried herself to sleep plus a bottle plus a car ride before she actually settled down. Her brow was furrowed in sleep. She was anything but relaxed and I just sat there and cried. I cried like I cried when I went to visit my own mom.

My mom had taken the device out to let Ondine rest and I cried because it wasn’t fair. My mom got to see her smile. My mom got to see her at peace. And when I had her I had to be the adult and keep the device in, so she never really rested. I cried because I was jealous that I might never see her smile.  Silly I suppose. But it was how I felt at the time.

Just a few days ago she started to smile for real. But this device ruins it every time. She smiles for a moment then remembers that she’s not that comfortable, that there is this tape pulling her checks towards her nose, that there is a piece of metal and plastic pushing her nostrils open and a final piece of tape pulling her lip down. Molding her face for the future. But today… I just want to see her smile.

Wedding Bells

Last Friday was Ondine’s first ever Wedding. There was some deliberation about what to do if she got fussy so as not to ruin her Godmother’s special day (Sean and Amy are now officially hitched!). Godmother #2 had offered to babysit since both Collin and I were set to be a part of the bridal party long before we even knew we were pregnant. The worry was that with the addition of the nasal pieces she might be more fussy than her normal chill baby state.

This kid lives to defy odds.

Comfortable in her baby Bjorn with “Aunties” Jill & Chelan in the back row (strategic location for a quick exit) the wedding begins. Mommy and daddy pass by and she is passed out cold in her pink party dress. Go team!

Of course to rapidly follow is the reception. I realize more everyday that a baby is like a hot potato that no one wants to let go of. Gimme-Gimme is the name of the game and after dinner once dancing started she was passed from one oohing woman to the next. Everyone wanted time with her. I came back from the bathroom to find her in the arms of a woman I never met- no Collin in sight. “Excuse me that’s my baby.” I said.

“Oh that’s alright, she matched our table.” said the grandma-type. “I’m ok. You go have fun.” Well alrighty.

It was how the entire night went. If they didn’t want time with the bride and groom, they wanted to check out their goddaughter. She got a dollar dance with the groom and with the bride (a little unfair because no one wanted to cut in on the infant) and danced with mom and dad a line dance. Our good pal Miles sang his epic “Milkshake” song and then it was time to get going.

Note to new moms: If you want your infant to sleep for a solid 5 hours and then most of the following day, take them to a wedding.

Jun

A Baby In Waiting

3-5 months. That’s what they told us for surgery. And we’re right on track. Ondine’s molding is going exactly to plan. And we are now scheduled for July 25th. She will be 17 weeks old.

You know, caring for a new born is never easy. I want to slap moms who say to me it’s the most beautiful thing they’ve ever done. While every day I love my daughter more and more, it’s also the hardest thing I’ve ever done. Compound the regular care schedule with weekly hospital appointments, add a combination of pain and uncomfortable medical devices that must be worn 23 hours a day and then you have an idea of what this takes. We are by no means the only parents with children who have special needs. But I’ve also noticed that not many people talk about those needs or problems. I’ve been directed to find support groups that sound more like an AA meeting than supportive  parents who are going through the same things.

This week Ondine was given the additional nasal part of the molding. The tissue inside her mouth has moved nicely and the gap is now less than 5mm apart.  They congratulate me on the progress and discuss the next phase: adding two pieces if metal to hold her nostrils up.

Up until now, Ondine has really only been bothered by the tape. She sleeps through 90% of her appointments. Not this time.

Ondine dozed once we had the device out for molding, but it was only temporary. The metal pieces are attached to little soft waxy pieces that look like lima beans. Her nostrils sit on the divet while the bulbous part pushes up on the inside of her nose. This is to form her nostrils for breathing and cosmetics. Ever had a pencil up your nose when you were a kid? Now imagine being an infant that can’t complain with words. So you scream.

It’s her most stressful appointment to date. I pick her up and cuddle her, bouncing a bit to comfort while I listen to the doctor explain where we are and where we go from here. I look at my pretty girl, her device looks more like a mask now, like a little baby Bane or something. While I hate every minute she has to wear it, I also realize it’s essential for her to be prepared for surgery. So I bite back tears and carry on, thankful she wont remember anything. 

Step One: NAM Molding.

Yesterday Ondine was fitted with her NAM molding. She’s such a chill baby even the doctor commented on it. “I think he might be the easiest baby we’ve ever fitted.” And she must have been. The molding was like a binkie, she loved it. It was the tape on her cheeks she didn’t like. But she fell right asleep afterwards and we made our way to the nursing floor.

We checked in pretty quickly and the nurse did the normal weight/growth check and then proceeded to watch in wonder as Ondine wolfed down 65ml of milk as if it was nothing. She did her little fake burp, I insisted on a real burp and fell back asleep. This is my hope that she continues to be so chill every time she gets a fitting. Wishful thinking, I know.

So now this device. They call it an appliance. Since I can’t blend a smoothie or toast bread in it, device seems more appropriate. It’s not dissimilar to a retainer for post-braces in orthodontics.  Only it has this button that sticks out her mouth  that you use to hook tiny little rubber bands to and attach to her face with tape. It’s frankly awful. But again, I have a super baby. She doesn’t seem to mind. Praying for a quick molding so that we get her through this before she realizes what’s going on.

Struggle for Air

It’s 5:15 am on a Saturday. The only thing I can do is type a note on my iPhone while my baby girl sleeps. What’s that? Put her back in the bassinet you say? I’d love to. Except she has a bilateral cleft pallet. That’s easier said than done.

I’ve previously written about the heart break and fear my husband and I went through during my pregnancy because doctors scared the shit out of us with the news that our child would have a bilateral cleft lip and possibly a pallet as well. Even more recently I talked about the process of delivery. But no blog I’ve read, no doctor I’ve spoken with could really prepare me (or my husband) for caring for a newborn with a cleft.

It not that different I suppose. You wake every 2-4 hours to feed/change/cuddle. There are giggles at her precious sounds and complete frustrations when nothing you do will console a screaming baby.  There’s the normal fears of am I a good parent, what if I’m doing it all wrong?

None of that compares to the fear of holding your helpless baby in your even more helpless hands as she stretches her neck gasping for air.

Hence I sit in a recliner at zero dark thirty, with no Oscar nomination in sight, and my 3 week old slumbering at a slight angle on my chest so she can breathe a little easier. We discovered this brilliant little trick at the hospital when one of the very clever nurses tilted her bassinet ever so slightly so that she wouldn’t choke if she threw up, and to ensure that anything in her mouth went where it was supposed to go: down her throat and not into her nasal cavity.

I guess I should explain. A cleft pallet is essentially a hole in the roof of the mouth. It means the barrier between the nasal passage and mouth is MIA. This leaves her open to fluid in her ear canal, problems with sight if milk clogs her tear ducts, and the very real possibility of her choking every time she eats which is about every 2 hours.

But in spite of all of that, the fear, the frustration, the sheer panic that wakes me after 5 minutes if she gurgles instead of breathes is worth it. Because her voice is the sweetest sound I’ve ever heard, and her deep blue eyes see right through my soul. Because right now I have a flesh and blood angel sleeping peacefully over my heart.

A Journey Begins

If I thought I had a lot of doctors appointments during my pregnancy, nothing compare to the first two weeks of Ondine’s life on earth. Or what’s to come over the first year of her life.

The first post hospital visit was a visit to Seattle Children’s Hospital craniofacial unit. This was my second visit, Collin and Ondine’s first. This appointment isn’t what were hoping for. We’re hoping for a meeting with the surgeon to discuss the trajectory of her surgery. Nope.

1st up are the nurses. They check weight, length and skin color. They have me feed her to watch and judge if she’s eating correctly. Turns out Ondine and I are pros at bottle feeding. You see, a cleft lip & pallet child can’t nurse. It’s been one of those ongoing “I’m an unfit parent” internal conflicts for me. And everyone else wants to tell me just try to breast feed. I want to scream “I can’t!” But the reality is she can’t. It’s not her fault any more than it is mine. She can latch, but because there’s a hole in the roof of her mouth and a gap in her lip she can’t get any suction.  It’s been hard for me to come to terms with but I refuse to formula feed if I can avoid it so our schedule is pump-store-feed-repeat. It’s painful and exhausting but it has to be done for her sake.
Next up is the social worker. I panicked slightly when they told me I had to meet one of those.  Luckily she turned out to be a fabulous woman whose purpose there was to make sure I had the tools I needed to care for my child. Her job is to be there to support us if we have questions, help us navigate insurance if necessary and anything else we could think of. She was the first social worker I’d ever met and trusted from minute one.

Finally the pediatrician comes in. She takes the exam even further checking reflexes, ear canals eyes and all the other standard healthy human tests. Ondine passed with flying colors. Then they were able to answer a few questions but not the main one. The answer is still 3-6 months and we won’t know until you meet the surgeon.

So we head into Easter. We have not yet met the surgeon, but we’ve met his team.