Back Breaking Benefits

This has been an October full of suck. It's usually my favorite month but between family and friends illness, personal injury and mourning a family loss... I'm kind of done.

Yesterday I went for a follow up for my own trip to the ER, because you know once in a week was clearly not enough. It's the first day I feel well enough to sit in a car since last Friday (and maybe a chair for any period of time). The residual effect of the pain meds the hospital prescribed have left me on bed rest with an upset stomach for almost a week.

I call, and gently remind the receptionist at my primary care provider's office of my condition, tell her it's to follow up because of my ER trip... I have to say that three times before it clicks with her. Then we go in.

Despite the fact that I'd been there the week before for a condition that had worsened, and to follow up the ER visit, we have to wait. We wait a long time. And Ondine is starting to act like any other toddler. And because it's a doctors office there other crying babies. But these don't bother me. They actually make me smile, almost longing for when she was little and things were so much easier. Then I snap back to reality and remember it was NOT easy.

The one dad takes his son outside for a moment to calm him down. When he comes back inside I can't help myself. I shout at him.

Me: Oh my God, does he have a bilateral cleft lip and pallet?

Bewildered (slightly embarrassed) father: Yes.

Me: He's beautiful.

Bewildered (slightly less embarrassed) father: Thank you.

Me: My daughter had the exact same condition.

She goes running by. A beautiful smile, no scar. He doesn't seem to believe me. We start to chat back and forth, my husband and I start sharing our story.

I show him where she started, which was much worse than where his son is for the pallet and lip. I show him more photos of her journey, the device she had to wear, the tape on her tiny cheeks. We talk about the doctors and the NAM molding that didn't work for his son but Ondine would be the poster child for. His sons name is Evan and he has a secondary condition I don't remember. He will have many more surgeries than Ondine because of it, but I would never know to look at his precious smile.

Evan's dad asks us if people ever stared, or gawked. Yes.

I tell him how it took some time to get over myself and not give a damn what anyone thought. I can tell that it takes the guilt and frustration off his shoulders to know someone else was judged the same way, to know that someone else felt they had to explain their situation because it is no ones fault that they were born with a cleft.

His wife comes out on crutches. She tore her ACL. She and I make a fine pair in our struggle to take care of our children with our injuries. 

She sits to feed Evan using a familiar pigeon bottle prescribed for such patients. We tell her some of the same stories we shared with her husband. We ALL complain how tired we were with the first bottle we had to use, grateful when they prescribed the new one. 

We have read some of the same blogs from Seattle Children's site, and heard some of the same stories. It's actually makes me forget about my back and my wait time for  my appointment because it's such an honor to talk to another family who's going through the same thing we did.

We keep talking. No one should cry because other moms, with their perfectly healthy babies, make them feel judged- but we both experienced it. I tell her I only pumped until 4 months but then broke down in tears that I wasn't a good mom because I couldn't feed my own baby. She almost cried, because she didn't make it even that long and thought she was the only one. 

I can see the relief on both of their faces to see our before and after photos. There is nothing that a doctor or expert can say that will be the same as seeing first hand the before and after. There is nothing that can replace the anxiety with the assurance that everything will be alright as witnessing someone else who has passed through the fire before you, with you can.

I am really grateful I injured my back. You see, we were supposed to be somewhere else Wednesday evening. But somewhere else didn't happen. My appointment took too long.  And because of that we were able to share Ondine's Journey with someone new. I can't begin to tell you how the light I saw on their faces, in their eyes, when I told them "I know how you feel" and they knew that I could actually say so. 

There is nothing that takes away the fear of taking a child to a hospital completely, but I'm grateful I suffered a little so that these strangers would know they were not alone and find hope.

Cleft Pallet Repair

Today was a rough day. I know we've been preparing and praying over it for months, but much like the first surgery, there is very little that can actually "prepare" one for taking your child to a hospital for a major surgery.

Early am, a cranky beep alerts us that it's time to get up. We rolled out of bed, practicing quiet so as not to wake the baby we were not allowed to feed. We had hastily thrown together a bag for her and us the previous evening and were pretty much ready to go. 30 minutes later we were on the road, an annoyed baby babbling in the back seat.

We check in, on time. Ondine has destroyed a onesie past the point of no return, so she's in mommy's sweater and her Seahawks cap. This simply makes her more adorable to the hospital staff. But she is still a cranky baby. My husband and I trade off every few minutes, both of us still sleepy and struggling to keep our very active little girl entertained and clean. She is also starting to realize it's been almost three hours and she hasn't had breakfast yet. She signs to every doctor who comes in to talk to us that she wants milk. When this doesn't work she fusses. By 9:30 she's demanding food, but it doesn't matter because they're taking her back to start anesthesia.

And now we wait.

Passing the time in a hospital is easier than it sounds, so long as you don't think about where you are and for what. So I decided I would focus on work and pour my energy into some paperwork. Success! Mostly.

Have I mentioned that I (and my mother) have over active imaginations before. About 2pm, an hour past the estimated surgery time, my mom mentions she had this vision of the old medical theaters. You know the ones where the early mad scientist presented a procedure to other mad scientist with the innocent victim patient strapped laying on a cold metal table for viewing. Yeah, that's where our minds went. Not the best vision to have while waiting for your daughter to get out of surgery.

Minutes later the pager finally goes off and thirty minutes later we meet with the doctor. He is one of the best in the country, if not the world, so we are very lucky to have someone who is so meticulous. Seattle Children's Hospital is known for its skilled people and the wealth of knowledge they share across borders. We are very blessed to have Dr. Tse and his AMAZING team. He explains to us the reason he took a little over an hour extra on her procedure and as expected it's all perfectly normal. He runs down the do's and don'ts again and then tells us we'll be able to see her soon.

"Soon" in hospital time means when they are good and ready.  After about an hour of waiting for her I risk it to run to the showers and clean off the days worrying. When I get back Ondine is still not there. My husband tells me there is a new policy for cleft pallet surgeries and we wont be seeing her for at least another hour.

5:30 rolls around and I hear a familiar whimper in the hallway. An IV is rolled in attached to a groggy teary eyed Ondine in the arms of her nurse. She barely recognizes us, it barely registers that there are new faces in the room.

At her last surgery, it was very easy to see where the pain was coming from, it was very easy to show her that she couldn't touch because it was on the outside and it hurt the moment you bumped it. This time the only evidence is a tear streaked face and a tiny crust of blood at the corner of her mouth. There are no outward signs that she's in pain.

I hold her, cuddle her, so does daddy. She is very disoriented, but seems to like the TV for the first time in her life. How to Train Your Dragon seems to calm her. But we know it's food time, so we prepare a bottle.

I've talked extensively about how different and difficult it can be to feed a baby with a cleft. This new surgery means for the third time in her tiny life she has to relearn how to feed. We have been using what's called a pigeon bottle. It had a valve inside the nipple so that when her lips or gums press together liquid is pulled through in a suction form, something she has never been able to accomplish alone. We use the same bottle now.

But when she tries, she immediately cries in pain. Her hands are bound up tight to keep her from accidentally tearing open the surgery just performed, compounding her frustrations with her pain so she cries more. Some of the milk mixes with saliva in her mouth and blood leeks out. It circles her lips and leaves a bright red reminder that what can't be seen is still very fresh and painful.

She cries. I cry. Daddy tries not to cry and our friends and family reassure us it's going to be ok.

And it is. Ondine was able to take down food, the number one reason patients are kept longer after surgery. She hurts, she's frustrated and a little stir-crazy from not being able to crawl but she's ok. Some medicine, a few more attempts at food and a dozen lullabies sung later she finally decides it's time for sleep. She's peacefully sleeping right now and it's reassuring. This is not her last surgery.  But she is ready for whatever is next, because she is stronger than I am and that gives me hope.

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 

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. 

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.