Homecare Adventures

10 days post stitches and ALL kinds of fun. In not sure if its an oversight by the hospital or the nurse or me for not asking. But they forgot to tell me how to change the tape on the stints. It should be pretty standard except that the rubber bands are literally sewn in. Hmm. Challenge accepted.

I managed to figure out how to stretch the bands without snapping or cutting them and get the old tape off. But this process was a good 20 minutes at a time. Then you get to lube them up with some sort of jelly safe for a baby and her nose. Never mind the screaming that happens once you get them back in her nose or the ripping she does at her cheeks to get the tape off.

I have a lot of parents try to pat me on the hand and tell me that they understand. No. You don’t. Unless you have a child with a medical condition that requires constant attention, you simply don’t. I recognize you’re trying to make me feel better, but as I’ve mentioned before, until you know what it is to hold you child praying that the choking will pass because there is NOTHING you can do to help, you don’t understand. I appreciate your empathy, but please don’t give me advice because you simply don’t understand.

Once I mastered getting the tape on the stints and the tape on her cheeks, there was a new challenge  each morning: Find the damn thing. Ondine woke up a few days ago and the stints were MIA. Sheer panic. Had she thrown them somewhere? We’re they in the crib. Please God tell me she didn’t swallow them!

Four days go by. It’s the Monday after we noticed them gone and they suddenly and mysteriously appear on the changing table. But not in a diaper or something. Oh no just casually hanging out near the wipes.  I’ve decided this is the ongoing “WTF happened to that” syndrome. It means you hand the baby a toy or something and seconds later its completely gone. Weeks later the garden gnomes have returned it and all is well.

We kept at if for a few days after we found them, but frankly they became more of a hassle then they were worth. We decided it was not worth it to make her cry over anymore. We have plenty to make her cry just being a regular baby. The struggle with the cleft, well lets try to make this as easy as we can and let her BE a regular baby.

Goodbye stints. Goodbye tape. Until we meet again at years end. 

Stitch Free, the Return of the Tape

So excited! August 19th and the stitches (finally) come out. This was a longer than normal stitches in situation due to schedule conflicts. The doc was out when we were in so to speak.  But huzzah they’re out! …

And the tape is back.

We knew she would have to have stints- little plastic tubes- to help her nose keep its formation after surgery. We forgot that there would be tape again.

She was NOT a happy camper.

Well such is the way of it. We don’t often like things thrown our way. More often than not we are fully prepared for one challenge and life throws us a curve.

For Ondine, the challenges will be life long. I have friends who are so excited. They think her journey is over. I don’t have the heart to explain there are at least two more surgeries.  This one was substantially cosmetic when you get down to it. The future holds a much more significant and difficult surgery. But we can only face them one at a time.

So for now, we will dutifully put her new device in and e the mean parents. Because the rest of her life she won’t remember this pain.

Pre Op Count Down

Monday July 22nd was our pre-op. It was a bit overwhelming, as they tend to be when there’s more than one stop. We first met with the surgeon and his assistant. They told us roughly what to expect and complimented her progress so far. I guess if there was a poster child for NAM molding, Ondine would be it.

Next up was the social worker, I think to best judge our mental state. Since Ondine is such a chill baby 90% of the time, we passed with flying colors. Though I can’t help but feel an ant under a microscope during them. I talk too much trying to show how awesome we are at parenting. It’s exhausting but I know what kind of power a social worker, even a friendly one, can wield so I ‘m not taking any chances.  Finally the nurses, to go over the Post-Op process and feeding. They ask us to feed her without her device in.

Disaster.

Ondine has become so accustomed to her device that it’s essentially become a part of her mouth. Think about it. You’ve had tape on your face since you were two weeks old and a retainer in your mouth covering a hole since you were 3 weeks. 4 months later the adults in their infinite wisdom decide it’s time to take this away. She screamed, she couldn’t eat, she’d smack the bottle away. She wanted nothing to do with it but she wanted her device back in. I’m so glad the nurse came AFTER the social worker.

Dejected and exhausted, we’re sent home with instructions to leave the device out as often as possible. This lasts until she wakes up again. Half a bottle of spilt milk and hysterical tears later my husband and I both decide that’s enough. Tape, device, bottle. And silence. The sounds of a happy baby getting enough to eat without any trouble. I’ll risk the trouble later.

Next night was the blessing of our first feature film. It was only appropriate to bring short stuff with us, she did after all make her presences known one week into production. And while we celebrated with our cast and crew, Ondine journeyed with us. A few people commented on how lucky we were to have her with us. Many of our film friends have been following her journey and it was their first opportunity to meet her. I think it surprised a few that we included her but having grown up on film sets myself it was only logical. Ondine’s journey is our journey. For the last year we’ve been making a movie. During that time we’ve also brought a child into this world. Post production for both has been a nightmare with taping, editing, surgery consults and very little sleep for both. But at the end of the evening we realized that the one prepared us for the other. So with two days left until surgery we celebrate the completion of our first feature and anticipate the next step in the journey for both Ondine and us.

Now & Then

Two weeks. It’s crazy to think there was time in my life when I didn’t know how to change a diaper, much less change the medical tape that molds her tender tissue day by day. But in two weeks my precious Ondine will have her first surgery.

A lot of folks see her, and her device that looks like different things to different people. some ask if its oxygen, some recognize it on sight. nearly everyone assumes I can’t wait for surgery. That’s not entirely true.  I’m a little scared.

When she was first born I asked “can you see her face?” I must have asked multiple times, I honestly don’t remember. But I asked enough for my mom to bring it up one night when I broke down. She looked at me, telling her in tears how beautiful I thought my daughter was and gently reminded me I asked. And when the answer was yes and then the follow up was “does she have it?” The answer was yes. Then my mom asked me if my heart didn’t break a little. The answer was yes.

And then I saw her face. Her perfect little lip shaped beautifully like a heart. Strong legs that fully extended and pressed against my belly.

Her neck was so strong she lifted her head to look around moments out of the womb. She was perfect. I know I’ve said that before. I’ve written a lot on it. And I realize that all parents find their own children to be perfect. But in that moment I was challenged.

Now, 3 months later- hours of sleepless nights, days of frustration followed by moments of perfect glee we are just about there. So of course as our new journey begins I look back to where it all began. I’m shocked to see the changes. Because I’m with her everyday I hardly noticed them. Her whole face transformed. Her eyes became more clear, her nose formed a real structure and her perfect little lips got even closer together.

So we wait. Patiently for the OR to open its doors. A whole new set of challenges await us. But I’m ready. I think 

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