Wednesday, February 19, 2014

168 Hours of SUCK!

Well. I try to stay positive, and I’m sure I’ll end this on an up note. But this week sucked.

Ondine’s surgery was a huge success. She was under a bit longer than expected, but with skilled surgeons comes perfection, which takes time. What I neglected to mention was how our once happy sleep-through-the-night little girl is absolutely stir crazy most of the evening. From frustration, from pain, from dizziness that I’m sure gave her a headache and from the disorienting feeling of not being in her safe zone.

I spent most of the night trying to get her not to cry. I’ve never been able to not get her to cry or sleep. Not since she was a newborn and I was just learning to read her needs. This is as heartbreaking as it is disheartening. It gives this impending since of hopelessness that already bound up in your inability to explain to an infant that it will be alright.

Once in a while she would fall asleep in my arms only to wake
screaming the moment I tried to lay her down. This went on for hours. Around 4 am she exhausted herself to a point that she couldn’t possibly stay awake and passed out. When the nurse came in to check vitals I told her I might kill her if she touched her (I’m kidding. Mostly). So we decided to let her- and me- sleep.

2 hours later it was time for our neighbor baby to get her treatments. I vaguely heard the physicians walk past us and to her side. Ondine however woke right up, pulled a glove off and stood up, shaking the bars of her cage crib to get attention. And we were back at it again.

I decided to move her to my couch bed so that she might waste some energy crawling. Nope. She only wanted to break free. She crawled to the edge and stuck her head through the open door while I held onto her tiny little hospital gown. She watched the staff at the nurse station for a while but eventually got mad she wasn't allowed to crawl.

She had so much energy and was eating so well that two hours later when my husband arrived they told us we could go home after some paperwork, a full 24 hours early.

This was good an bad. Good because now Ondine had a family space to crawl and play in. Bad because now we were 100% in charge with only us and family to help- all of who were leaving us within the next few days.

This has been a repeat MO for the last week. Every night we have a little “discussion” about bed time. She falls asleep in our arms only to scream as soon as we set her down. Once we finally get her down it’s about 2 hours before she’s awake demanding comfort usually.

I spent a bitter sweet night where she fell asleep n my chest like she used to when she was new born only for her to wake in a start and scream in pain and discomfort for the next hour.
Last night however, after an evening with our church Ohana group, she went right to bed. She woke once, and then again in the morning bright and early. We’ve learned to trade off and couldn’t make it through without our  friends, family and church friends brining us food so we could focus on her. Which surprised me. I don’t ask for help easily but find that if there is help offered I will gratefully accept. Especially food. Less cooking = happy mama.

So I guess it wasn’t all suck. There were good moments and beautiful souls who helped us. But my prayer is for one full night of sleep. For her and for us.

Wednesday, February 12, 2014

All the Little Voices

The hardest thing about staying overnight at a children's hospital is the cries of little ones whom you can't help. Our daughters roommate was young, newborn from the sound of her. She had a team of 4-10 doctors/nurses/specialties/leadership that participated in her care as often as she needed it. I couldn't see her, and her parents were not there for whatever reason (and in my experience it's a good one) but I can't help comfort her. I'm too busy comforting a little one of my own.

Ondine has always been a vigorous child.  She surprises doctors constantly at how strong she is and how well developed at less than a year.  And yet all sorts of precautions have been exercised as part of the protocol of Craniofacial patients. For example we waited two hours post surgery to even see her because it's standard protocol.

I'm not comparing, Seattle Children's is the best place to be for this.  But that doesn't make it easier.

When Ondine came to us, she was zonked out. We figured that was the drugs. But it lasted through one of the most hellish nights I've ever experienced with her.

Ondine typically sleeps through the night. We're that blessed sort of family who have a routine for her and stick to it. Her naps and awake times could set military protocol. Bit everything is off now.

When I did manage to get her down for 2.5 seconds, the Ronnie baby had a fit, wanting mommy but only having a nurse to attend her needs. She cried so Ondine did.

This quickly delved into full on fits as the pain increased in tandem with her hunger and the realization she was no longer in charge. It was a fight to get her to sleep, and eventually we just had to put up the crib bars and let her cry because there was nothing we could do.

But the hardest part was taking her home. That should be your moment of triumph. But it's not. It's terrifying. Because now it's up to you to be a good mom without any guidance other than a pre-printed pamphlet the hospital gave you.

And each time I give her meds, she zones out. But not in that high as kite funny ha-ha way. It's that stare at a wall I'm not here sort of way.

Luckily she's a tough kid and the meds ware off quickly. She resolves that the gloves aren't coming off and learns to crawl with them. She still signs for milk and mama under the messing restricting her fingers. She still wants to only fall asleep in my arms.

In a way it's like she's a new born again, only this time she's Mighty Mouse. This time she has cognitive reasoning and the strength of ten babies. But she cuddles and falls asleep in my arms, that semi-sweet slumber that says thank you mom for making this not suck so bad. Okie kid. Any time.

Tuesday, February 11, 2014

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.

Friday, February 7, 2014

Tiny 12's

With all the excitement about the bustling start to the year and Seattle most decidedly making their voice known, it’s been a little chaotic around here. In the hubbub, while everyone else was basking in a Seahawk glory we took our little girl to Seattle Children’s Hospital.

That is a team that deserves a trophy. They’re wonderful there. Every floor has bright colors and kind people so families and children feel comfortable… Well as comfortable as you can at a hospital. Everywhere we looked there were 12’s, including our tiny 12 with her own little headband just her size. It was nice to have so many folks not worried about what was wrong with her but more excited to share with her their excitement over this enormous victory.

And it’s a pretty cool victory that’s special to the heart of Seattle Children’s. Because a football rivalry turned into a fundraising campaign that benefited both Seattle Children’s and the UCSFBenioff Children’s Hospital. Another victory, especially with our Hawks making monthly (sometimes weekly) visits to the hospital for fans who can’t make it to games. But our game is just about to begin. We’ve been gearing up for it since her last surgery in July. We knew this one would be harder, and that this one would require more patience.  And the build up is killer.

I don’t know what to expect this time. Ondine was tiny last time. She was just learning to move, so they didn’t need to take any extra precautions. She was medicated and recovered in record time. The Poster Child for NAM molding according to her surgeon.

That’s great but my understanding of this surgery is that it is twice as difficult and recovery is twice as long. Because this is the more dangerous of her surgeries, it’s entirely inside the mouth. If you’ve ever had a tooth pulled or worse, cut from your mouth you know how painful it can be just to bump it.

My prayer is that some of that love and hope that our 12’s gave the Seahawks and took them to victory can take Ondine there too. She’s one of the tiny 12’s, the brave children who have to go up against giants at Seattle Children’s Hospital.

Take a moment for me please. Say a prayer, not just for Ondine but for all of the kids who are currently at an away game. Away from home, away from family and friends, away from their favorite nighttime cuddles and praying for a miracle.

Pre-Ops... Again

Monday morning, bright and early, it was time for our pre-ops. This is sort of a standard health and wellness check to make sure she’s ready for surgery and not in a condition that might inhibit her recovery or increase the risk of infection afterwards. So we knew the drill.

We arrived early, checked in and were whisked away to our private room where we wait for the parade to begin. Not nearly as exciting as the Hawkalypse. It’s just the three of us waiting. The first person is the nurse, who checks growth including height, weight and head size. This was the first time it clicked why on earth her head size is important. I thought it was just for developmental milestones. It’s not.

If your child head is larger, like our daughters, it may not be that she has a big head. What bothers doctors is that if a child’s head is larger than normal and not following the average trajectory of growth but accelerating past that, it could mean that there is a build up of fluid between the skull and the brain- and that is a very dangerous and scary thing.

Typical signs of this is lack of focus, lack of motor skills, non responsive and, you guessed it, an abnormally large head. Ondine has exactly one of those symptoms. If you’ve met my brother (who got stuck in the birth canal) or my husband (who has met exactly one person with a larger cranium) than him or me (who loves hats and can NEVER find one that fits my hug noggin) then you’d understand: we have big heads. On one side we can trace the line to Vikings, on the other the Celts. We are large people.  They measure us just in case before her LAST surgery. Yep, height weight proportionate, just big boned.

But, as per usual they somehow forgot that they measure all this last time. Or maybe they’re erring on the side of caution, which is probably more accurate. Ondine is wicked smart, incredibly active and nearly walking for the last month (which I’m told is unusual).  Her head shape is normal, and even though it’s a big skull, it’s not out of the ordinary for the rest of her body. She’s in the 50th – 90th percentile for weight and height as well.

Suffice it to say, they decided she needed an MRI. I’ve had those. They’re annoying, loud and uncomfortable. They tell you to listen to the relaxing music and just try to fall asleep. Yeah right. But you can’t tell a 10 month old to just sit still. Oh no. There is a method, but it’s not fun for baby or for mommy.

Into the room with so many warning labels it might as well be an office in Fukushima. It’s dark, cold and there’s a stranger in it. Ondine does well with most new faces but with men she has been shy as of late, also a normal developmental phase for babies.  So the new face is being very nice, but he now has to swaddle Houdini. To do this we start by putting her tiny little head in a vice, a soft padded vice, but a vice all the same. Next, we swaddle her in industrial hospital sheets, one arm tucked nice and tight, then the second. Ondine has figured out now that something is about to happen and she is NOT going to like it. He’d already put a little wax in her ears to protect them and now we Velcro her down. One big strap over her chest, one small strap over her forehead to keep her in place. In she goes to the tube, she is now in hysterical tears. The crazy loud machine makes it worse, she doesn’t know where she is she can’t get away and this beast of a device is making monster noises.

Moments later she’s withdrawn, unstrapped and handed to me. She has those panic tears. The ones that are desperate for comfort and full of fear. The outward expression that an adult would be able to articulate but a child must hope that you’ll understand. I do, I hold her tight and we head back out for daddy and a ride home.

The good news, she’s perfectly normal. The bad news, mommy cried too. I just hope that when surgery happens week, it’s not as scary as the big bad MRI.