Trunk or Treat!

Here you are, on your way to"Trunk or Treat" at our church. Lots of cars line up in the parking lot, decorate their trunks in a cute theme, and all the kiddos walk from car to car collecting candy.

The three of us went in scrubs as a medical family. Daddy was the surgeon, Mommy a doctor, you were our nurse. And the cutest nurse I have ever seen at that! We figured it was a fitting costume, since we spend so much of our time at the hospital. At this point we could all have our medical degrees!

For the first time EVER you wore shoes tonight! Your tiny feet still don't fit in 0-3 month shoes, so you usually wear socks that look like shoes or go barefoot. But tonight, you wore white "nursing" sneakers. We had to keep a close eye on them, because they wanted to slip off, but you didn't seem to mind them at all.

What a sweet girl you are, still so happy after a long, late, almost nap-free day!

Chatterbox

This evening we worked on sitting up, taking the passy, laying on your stomach and lifting your head--in all of these things you have showed much improvement. Then we began working on saying "Mama". Actually, we have been working on that for awhile, but mainly with your hands. You know how to say "Mama" and "Dada" in sign language and have been very good at it for a couple months. We sometimes call Daddy during the day to check in, and when we do I put him on speakerphone. You have learned to associate the sound of the outgoing ring with Daddy's voice, so before he even answers you have your hand up by your forehead saying his name. You are good at saying Mama too--although since that sign is by your mouth, you often get distracted and start mouthing your hand instead. Still, I always know when you are "calling" me.

What usually happens when I try to get you to talk is either you move your mouth and no sound comes out, or you use your voice but forget to open your lips. You have been so chatty since the shunt surgery, so tonight we worked more than ever on saying the word with your voice and you did so great! Daddy and I were very excited after it was clear you were really understanding and trying. The closest you got was "Ama" which was close enough for me! We would cheer and clap and say, "Yay, Audrey!" and you just looked so proud of yourself. We were proud too!

Out of all areas, you are furthest developmentally when it comes to communication. I am so thrilled, because I have never known whether I would ever hear you speak, or call me by name. After tonight, I am certain we will get there one day. So that is my new project. Working on more words, both with sign and voice. I bet you will be talking up a storm in no time!

Grins and Giggles

You are turning into such a little girl and I love it! These days you are just so active and alert, you talk to me all day long. You don't want to lay on the floor anymore, you want to be up and moving around. I don't blame you. Unfortunately there is no way I can leave you sitting up in one of your chairs unless I am within an arms length away. If you vomit while sitting up, you choke on it until I flip you over. So if I need to get things done, you still have to spend time on the floor. However your head control is improving--maybe it won't be too long until you can sit on your own. You don't think you need to take naps anymore. And the truth is, when you do go all day without a nap, you do just fine. No meltdowns like most babies would have. Always full of smiles and giggles, you definitely have your own sense of humor. The vast majority of the time, whatever you think is funny is something you hear.

Right now the funniest things are:
*Mommy saying, "I am going to eat you up!" and then making slurpy sounds.
*The spoon scraping on the bottom of the yogurt can.
*Tissue paper or plastic bags rustling.
*Daddy's voice on the phone.
*Typing on the keyboard or my phone.
*Telling you how silly you are.
*Velcro.
*When Mama says not to pull your hair. I am pretty certain you know what I mean and think it is a game. It is NOT a game.

What is not funny:
*Babies crying.

You are very compassionate and without fail you cry whenever you think someone else is upset. Your sweet bottom lip comes out, tears start flowing, and you are genuinely sad. We will see how that works out when little brother shows up. With the two of you crying, Mommy may be crying, and then Daddy will be sad...we may be a household full of tears for a couple weeks. My hope is that sooner rather than later his fussing will just become background noise for you, and you will decide you don't care so much what that stinky little brother thinks.

The Hairy Truth

I have avoided this topic for as long as possible. I didn't want to unnecessarily alarm you if it turned out to be no big deal. But it is time you knew the truth.

You lost a lot of hair for your surgery.

A lot of hair.

Those surgeons are heavy handed when it comes to the razor. The entire lower right quadrant of your hair is gone. They sent it all home with you in a little jar. (Not sure what I am supposed to do with it though...) I was hoping that after your bandages came off and your hair was washed, it would lay flat over the bald spot and conceal it. That is not the case.

I am not sure how Mommy can fix this one. Too low for a hat and a ponytail would be more revealing--I think our best bet is a thick headband that will cover the majority of the spot that was shaved. However, I am not sure if that will be comfortable for you. The valve that was inserted behind your ear is very noticeable and is very hard. You don't seem bothered to lay on it, but I am thinking the pressure from the headband may be too much. We will just have to see.

The good news is that your wounds look wonderful! You came out with two incisions, one on your head and one on your tummy. Both are completely healed and the scars are very clean. In a few weeks we will go back for another CT scan and see what difference the surgery has made.

All things considered, if the worst we came out with was missing locks, we did pretty good! So don't be sad over your hair...it will grow back.

Audrey's Nights In

On Wednesday Daddy had a "guy's night out" so you and I stayed home and painted nails. Actually just yours--I can't reach my toes. For the first time I painted your fingernails and they are beautiful! You got Daddy's strong nails.

Then Thursday Mama went to a "girl's night out" and you spent special time with Daddy. He gave you a bath and read you lots of books--he said you especially enjoyed a pop-up book.

The next night Daddy and I went out together, and you stayed home with Grammy. She let you stay up late--till about 10:00. When Daddy and I came home 45 minutes later, you woke up and we used the opportunity to take out your contacts. It was late, and we were tired, but you were not. You called out for us, smiled and were just your usual adorable self. I have such a hard time resisting your huge grin (plus I just missed you), so I was leaning over your crib making you laugh. Daddy was laughing too, but said I was only gearing you up for play instead of sleep, and he ran me out of your room. I thought he was right behind me, but when I turned around in the hall, he was by your crib talking to you and giving you kisses! Which, by the way, is so not fair cause I can't reach you by leaning into your crib since your brother gets in the way!

Neither of us can resist your charms.

Audrey "Knockout" Bowers

I decided that the pressure on your brain was suppressing your giggle box. Now that the pressure is gone, you are the happiest baby I have ever seen. Tonight you and I laid in bed for over half an hour while we laughed and laughed. Everything was funny to the point where nothing was funny. You would laugh for no reason at all, which would make me laugh, which made you laugh harder.

Then Daddy came in and hovered his head over ours. That's when you decided to take a big swing with your left arm and smacked both of us at once. Daddy said, "You almost took out both your parents at once! And look, there isn't even any remorse in those eyes!" And sure enough, when he helped you to reenact the scene, you thought it was hilarious! It was pretty funny, until I had to tell Daddy that you really do have sharp nails, so he needed stop hitting me in the face with your hand.

Fun night.

Home Again, Home Again

You were doing so well recovering from surgery that we were able to come home from the hospital a day early. I was thrilled--I didn't remember the pull-out couch in your room being so uncomfortable last time you were hospitalized. Of course, back then I wasn't 8 months pregnant either. So Friday evening after we arrived back at the house and unloaded our things, we all went to bed early and got some much needed rest.

Around 7am Saturday morning you gave us a little scare. After throwing up, your breathing was very labored again, and we could tell your throat was restricted. You sounded asthmatic, and I considered taking you to the ER in case your condition worsened. Thankfully we have a pulse-ox machine, so I knew you were getting plenty of oxygen, even if it took all your energy and your heart rate was higher than usual. I brought you to bed with me and watched the monitor as you calmed down and your pulse worked its way back to normal. After an hour or so you were breathing regularly and we both fell asleep for a bit.

Your neck is so stiff again. We had made a lot of progress over the last several months towards loosening it up and getting you to tuck your chin but have lost all that progress now. I am hoping it is just a temporary set back and it won't take us as long to get back to where we were.

Overall, I am so happy with the outcome of this operation. Other than the bandages, shaved head and stiff neck, no one would be able to guess you just had brain surgery. This surgery caused me to be more nervous than I was for any other--however the recovery time was much less than most. And for you it didn't seem very painful--the only pain med you were given was infant Tylenol, and within 48 hours post-op you were off that.

Ironically, the hardest thing for me to surrender completely to God is you. I want Him in control of my marriage; He has made clear His plan for it and I desire the same. I can give Him our finances; He has always more than provided for our needs and I never worry those won't be met. But you--you are much harder for me to give up. I may not agree with His will for your life. But I know that it should be easiest to put you, more than anything else, in His hands alone. There is no way I can control what happens with you medically or make the right decisions on my own. And I would have no hope if I didn't believe that God was coordinating everything to work out for you just the way it should. So I have to let go and know that things may not turn out the way I want, but that no matter what happens, it won't catch God off-guard.

It's amazing. God doesn't need to prove Himself to me. If just being God weren't enough, we have had countless miracles in your life to show how great and good He is. Yet He is merciful enough to be patient with me when I am doubtful, then shows me once again what He is capable of. And just when I think I am fully reliant on Him, God teaches me to trust a little more, give up a little more control, let go of a little more fear.

Flying Colors

Oh, my strong girl, you did so good today! Apparently they had a difficult time intubating you again, and I have seen at least a dozen prick marks on just one arm and one leg. But overall things really went well! You were extubated quickly after you woke up and once the Tylenol hit you weren't too uncomfortable. The hospital is just about filled to capacity, so we were fortunate to get our own room. You took a good nap for a few hours, waking up with a lot of mucus. Daddy and I were worried about your breathing. You threw up some blood (trying to intubate so many times made your throat raw) which caused you to wheeze, and each breath took a lot of energy. We tried a breathing treatment to open your airway, but it didn't quite do the trick. A new doctor came in and deep suctioned you--he removed super thick, bloody secretions and then you sounded much better. Hard to breathe with all that in your throat!

Tonight, as we sat in the rocker, you were smiling and laughing at Mama! I don't really know what was so funny, but I was thrilled to see you acting like your normal self. Laughing led to coughing, so I didn't encourage it, but it was so sweet of you to try to convince me you were feeling ok. I am relieved things went according to plan so far. We aren't in the clear--complications could still arise within the next month, and 50% of shunts need revisions within the first two years. But we are off to a great start.

Tomorrow we just hang out in our room all day, keeping an eye on you. Hopefully we go home Saturday!

Surgery Prep

Tomorrow is the big day. My plan was to go to the hospital this morning, get you pre-admitted for tomorrow, and be home by noon to get things done and for you to nap. When we got there it seemed as if everyone had the same idea, and we were stuck waiting for a long time for each phase of the process. Honey, you, and I didn't get back until almost 5:00 and by then the entire day was gone.

Daddy came home, ate dinner, and the three of us spent some time together. We cuddled and read books--you think Daddy's sound effects are funny. In fact you thought most everything was funny today. You talked more than you ever have, and were very interactive with us. Ironic how that always seems to happen right before a surgery. Then I almost feel guilty taking you into the hospital because you are just so innocent and unsuspecting, and afterwards I feel like we are set back a bit. But I am still praying that this surgery is just what you need to jumpstart your growth and development.

We are doing something new this time--trying fresh frozen plasma (FFP). It is a blood product that is recommended for SLOS kids when sick or for big surgeries. We have never used it before, I guess because by the time you were diagnosed with SLO we had already been through several surgeries on our own, and discovered many of your issues through trial and error. At that point we had never used FFP before and things went fine, so I didn't look into it for the rest of your surgeries. But this is a big one, and with the flu going around I thought it was probably a good idea. Our surgeon spoke with Dr. Porter, an SLOS specialist and learned the protocol for dealing with FFP.

ARDS stands for "accute respiratory distress syndrome" and is often fatal for SLOS kids. A child could develop ARDS from an illness such as the fu, or even just from the stress of a surgery. Cholesterol (which you severly lack) in the lungs protects surfactants from oxygen damage. The loss of these surfactants cause ARDS. FFP has been found to quickly restore the lungs levels of cholesterol to normal. In several cases it has been life-saving for children who otherwise would probably not survive and in your case we are using it as a prevenative measure. I am grateful our doctor agreed to consult with the specialist on this issue, because I think it will be a really good thing for you.

Well Sweetness, it is now almost midnight and Daddy and I are finally finished packing up for the next few days in the hospital. How such a little girl can require so much luggage is beyond me. We are about to switch you from formula to Pedialyte then it is time for us to get a few hours sleep before we all head to TCH early in the morning.

Goodness I love you.

Photography Phenomenon

So I missed your one year pictures. I am not really sure what happened--I guess we just got busy and I didn't make it a priority for awhile. Then you started teething for over a month, and we would have never gotten good smiles out of you then. In the meantime, you have cut several teeth so now you look different and I am disappointed to have missed your toothless grin. There's nothing I can do about it now, but when I found out we were having brain surgery, I knew I had to get some good pictures of you before your head is shaved. So Mrs. Kris was sweet enough to give up Sunday evening with her family to do a last minute photo session.

You woke up from nap in such a great mood, but by the time you got to Kris' studio you were not a happy camper. For over an hour there wasn't much we could do to get you to smile. All of our surefire tricks were failing. Kris even gave us a disconnected keyboard to type on, because that sound makes you laugh. No such luck. Under normal circumstances it wouldn't be a big deal--Kris is so good about rescheduling if babies aren't cooperative. But this time we didn't have any other availability to reschedule to (maybe you sensed my desperation). Finally your sad little mood broke, and we got some grins and giggles out of you. Unfortunately for Mama, I was the funny one that night. You laugh at the special way I say "hi" to you, so I did that over and over and over again. When that got old (quickly) I started to cheat and say "hahaha" almost in a panting way. That was really funny too. Rather than pass out trying to make you laugh, I would hand it off to Daddy to try. Nope. He didn't do it right I guess. It only worked when I did it. Daddy is ALWAYS the funniest one. Maybe I am making a comeback as your favorite!

The photos are gorgeous. You are such a pretty girl. I tell you so all day long, but it is more than difficult to capture your sweet, shining face on film. Your "bad" eye catches the light poorly, and you can tell something is physically wrong. And often times when I take pictures of you, the flash brings out the red in your skin and just isn't so cute. That frustrates me because you are so beautiful, and I want others to see you the way I do. I am so grateful to have these pictures of my precious, happy girl.

http://krisevansphotography.blogspot.com/2009/10/one-very-special-little-girl.html