July 2010

We all survived Bella’s pharyngeal flap (p-flap) surgery with Dr. Stephen Beals to help correct her velopharyngeal insufficiency.   The surgery went smoothly, no big surprises or complications, which is exactly what mother hopes for.   The surgical team was amazing.  Dr. Beals and Dr. Drewson are phenomenal, and I truly believe we worked with the best people possible on this.    We’ve had 1.5 years to plan (and delay) this surgery, and during that time every person who heard that Dr. Beals was our surgeon replied with “oh, he’s the best”.

With Uncle Josh, Aunt Kim, a giant stuffed tiger and Tawnya's Raggedy Anne the morning of surgery.

The pre-op nurses at St. Joe’s ROCKED.    We kept Bella very busy in pre-op, and then Dr. Drewson gave her the magical elixir known as Versed, and while she didn’t appear “drugged” or “silly” as I’ve heard, she could have cared less when we had to leave.   Though she was a little upset when they took the Nintendo she was playing away.  Either way, she didn’t fuss or get upset.  God Bless Versed.

Playing Pixos in Pre-Op

Versed starting to make her not care if any of us are around...

Ready to head in to surgery for her pharyngeal flap

The recovery room was not a pretty site.  She came out of anesthesia very violently, was screaming (well as much as one can when they’ve just had their throat cut up), trying to pull out her IV’s and the tube in her nose to help her breathe, and was swollen and had blood on her face.   It was the most heartbreaking thing to see, and I pretty much decided that there was a special seat in hell for me for putting my poor child through this.  They got some demerol in her system, and she eventually calmed down.  She would doze in and out, but the “in” always included her attempting to scream and cry, and her pain was very apparent.

My poor baby in post-op

Even though we’d worked very hard to get a 23 hour stay approved (vs outpatient), the post-op nurse was all set to get us out of there “as soon as possible”.   All while my child is out of it on pain meds, and we are having to hold an oxygen mask to her face because her oxygen keeps dropping and the monitor alarm keeps screaming about it.   After an hour or so, with very mixed emotion to go ahead and head home.   Dr. Drewson actually helped me make the decision, she said look, we will do whatever you want, but staying here you risk infection, she won’t be as comfortable, and frankly you’ll be pissed off most the time because the nurses won’t be getting her meds on time.  Good point on that last one.

So home we went.  For the first few hours were rough, but about four hours after we got home, this child shocked all of us.  She was sitting up in bed, drinking, and asking  to open presents (I had stockpiled some small gifts for her and wrapped them all – they were a nice distraction whenever her nerves hit before surgery, I’d have her look at the presents and decide in which order she wanted to open them).   A few hours later I was so glad we came home, because she would haven been bored out of her mind at the hospital.  She was playing Mario Kart on the Wii (in her bed – with the post-surgical entertainment center we set up for her), watching movies and chatting as much as she could.

The first night was a long night.  I slept in her room, and the pain was certainly a challenge.   Every day it gets a little better and more manageable.   She is a TOUGH cookie.   The first two days she kept crying for something more to eat than the clear fluids she was restricted to.   Unfortunately when day three hit and she could finally have milkshakes and soups, her appetite was gone.   My full time job became getting her to take the tinest sips of juice.   I think Tuesday she maybe consumed 12 oz of fluid over the entire day.   She’d break down in tears, and couldn’t pinpoint why it was so hard to drink (she didn’t feel it was the pain, she said more her tummy was too full).

We are now at the one week mark (YAY!!!!) but drinking and consuming anything is still our greatest challenge.  She’s down seven pounds, and I haven’t had her on the scale in two days, so we may be closer to 9 or 10.   She’s eating a teeny tiny bit of ice cream and pudding, and every five minutes I’m forcing her to sip her juice.   On Tuesday she can eat things like mac n’ cheese, and she keeps wanting that, so I pray when we get to Tuesday, she will eat more.   Watching her lose weight like this is so hard, I hug her and just feel bones everywhere. 

Aside from that we have the most amazing support team around us – my parents, siblings and our friends, especially her dance teachers Jen and Tawnya have been amazing, and have gone to such great lengths to help her feel better, and to work with us on getting her to eat and drink.   Jen and Tawnya have showed up many times, milkshakes in hand, and spent considerable time with her trying to get even a little bit of them down.   We are really blessed with fantastic people in our lives.   She’s gotten some cards and gifts in the mail that have made her feel really special as well.

Many people are surprised that her voice doesn’t sound too different (myself included).  But in five weeks we will return to speech therapy, where she will have to start a very intensive speech therapy program.   I’m hoping we can work with the amazing Deborah Leach down at Barrow.  The entire Cranio Facial Team down at Barrow’s is truly amazing.   Top notch.   We’re very fortunate to have access to such talented individuals.   Bella will have to re-learn to talk in a way.   She learned to compensate for structural problems, which is fabulous, but now she needs to learn to talk correctly, and using the new tool (p-flap) that she has in place.

It’s been a long week!    Two little girls.  Lots of crying from both.   Trying to keep everyone as comfortable and hydrated as possible.   As hard as it’s been, it’s nice to spend so much time with both my girls, with no schedule or clock to watch.   Gotta find that silver lining. 

My beautiful girls. I am blessed.

I found this “letter” on widesmiles.org, a website full of resources for cleft lip and palate issues.   It’s so hard to explain to people how I’m feeling right now.   It has to be hard anytime a child under goes surgery, but having that surgery be a “choice” that we are making somehow seems to make it harder.   Anyways, I think this captures things so well….

What’s it like for the Moms? Well, it’s like tearing your heart out and watching it go on beating… It’s like denying everything that is maternal inside of you. It’s like standing between a rock and a hard place and then feeling a boulder come crashing down on you head. It hurts.

It is our jobs as moms to protect our children from everything… from immunizations, to warm coats and mittens, to training wheels to curfews…We spend our lives protecting our children.. and loving them.. perfectly, completely, just as they are. And then we have to voluntarily make arrangements to hand our child over to someone who will — in our eyes anyway — take our child to the very brink of danger, inflict pain on our child, and ultimately CHANGE our child… and we let them do it over and over again.

But we don’t WANT our child endangered. We don’t WANT our child hurt. And we don’t WANT our child changed in any way. Yet we know we have to FOR our child.

It’s like taking the momma bear that lives inside us and chaining her to a place where she can no longer protect her cub, and watching her cry. It’s like total and utter helplessness at a time of our child’s greatest need.

What is it like?? Pull your heart out — throw it on the ground.. step on it..grind it…then put it back into your chest. THAT’s what it’s like.

And every one of us does it…. over and over again….Why??? Because we know that to NOT do it would be worse.

Moms find a switch, when the time comes, to turn themselves to “autoparent”, and they find that they can go through the motions and get the thing done. But it is never easy. I have waited in the little room now, with my child behind the big doors, 16 times. It never gets easy. It only gets more familiar.

It may very well be that the pain of letting go of your child at a critical moment is compounded by feelings of guilt. I don’t know — I did not give birth to my children. But there is also a tremendous fear that what we do for our child will somehow be unforgivable later. Will they forgive me for making them hurt so badly?  Will they understand?

What’s it like??? It’s hell. But…I walked into it voluntarily. And I know that I have accepted these few weeks or so of hell, for a lifetime of joy with a child I deeply love.

How do we get through it?? We do. We turn on the autoparent. We walk through the steps. We hold on to the trust we have in our doctors, to the faith we have in our Higher Powers and to the support we get from family and friends. We keep our heads above water because our children need to see us swim. They need to know that we are there, a strong and ready advocate for them at their time of greatest vulnerability. We do it, and we get through it, and we go on. It’s not easy by any means, but it is also not impossible. It is do-able because it HAS to be done, and so we do it, and we do it well, FOR our baby, with an eye to the end result and our child’s ultimate gain.