Wednesday, December 30, 2009

Christmas Joy and Christmas Toys


Christmas day was a lot of fun. We started that morning by opening gifts at home. Daddy and I decided that for every Christmas you and Liam will each receive three presents and a stocking. You loved your gifts...you especially loved opening them because of the sound tearing wrapping paper makes.

Brother wasn't as grateful.


This is one of the toys we gave you. You love it because there are so many things that make silly sounds, and I love it because it helps you put your feet on the floor. Usually you pull your legs up so that no weight is on them. Sitting in this seat, your legs eventually relax until your feet are flat on the ground. Still no weight, but I am hoping that will come with time. Just letting them hang loose is a big deal for you.

Thursday, December 24, 2009

T'was the night before Christmas...








This evening is Christmas Eve, and you two babies are snug in your bed...I don't know what dreams are dancing in your heads. But they are surely sweet dreams because we had such a good night.
It started at the Stephens' family Christmas party where we saw Grammi the Great, along with many of your aunts, uncles, and cousins. We left and went straight to church for the 8:00 Christmas Eve service. You and Liam sat with us, Aunt Shelby, Uncle Clay, and Grammy in big church and I was so proud of you both. You are such good babies. Both of you stayed awake and just listened quietly--neither made so much as a peep! That is until a very quiet moment, right as we were instructed to drink for the Lord's Supper. Liam chose that moment to let loose a long, wet, stinky toot that turned heads. Grammy and Aunt Shelby burst out laughing, Uncle Clayton started choking on his "wine", and I had to concentrate on not spewing mine out with laughter.
When we came home it was time to put on our Christmas jammies and set out treats for Santa. I forgot to make cookies until it was too late, but it is ok, because I happen to know that Santa loves chocolate. I am positive he will love the peanut M&M's, Snickers, and Baby Ruth you gave him. And of course, 9 pieces of celery--one for each of the reindeer. Then it was off to bed. Tomorrow will be full of more family and fun, so Daddy and I are right behind you. Love you Sweetness.

Tuesday, December 22, 2009

Puppy Love



Look at this sweet puppy love. After baths, you and Liam are the best smelling pups I have ever met--I could just eat you both up!

Wednesday, December 16, 2009

Visiting Ol' St. Nick


Today we went to see Santa! Did you tell him what you wanted for Christmas? I hope you spoke up for your brother too, because while you smiled sweetly, Liam slept away.
You never cease to amaze me with your wonderful disposition. On Monday we went shopping with Grammy and were gone for 10 hours. You sat up so big in the front stroller for several hours, and when it was nap time, I put you in the back so that you could lay flat to nap. After a few more hours it was clear you were not falling asleep. At the last store we went to you finally crashed, but never got fussy. You are definitely my little shopping buddy! Liam did a great job too. What a good big sister you are to teach him how to be so laid back and happy--unless he is hungry of course. Then it is the end of his little world. He got his appetite from Daddy!

Saturday, December 12, 2009

Christmas Stockings


You got a gift in the mail from Aunt Paula today...look how cute you are in these Christmas tights!

Wednesday, December 9, 2009

Feeding Clinic Possibilities

You are 18 months old today! Time is passing so quickly. You have been making a lot of progress lately, but I have decided it is time for you to start doing some more big girl things. Top of my list is holding your head all by yourself and eating.

Supporting your own head has become easier for you. You can hold it very steady, and smoothly look from side to side. However, your neck is still so tight that you hold your head very far back. If I hold your back straight you look up at the ceiling, so to compensate I have to lean your body forward. So my number one goal these days is stretching that neck out so that you can look directly in front of you and downwards.

Once we have accomplished holding your head correctly, we can begin working more intently on eating. Too be perfectly honest, I have done a terrible job making you eat. There are lots of excuses. I don’t like to make you throw up any extra by attempting an oral feed, since you allergic reaction I am hesitant to try any foods, teething makes you produce more mucus which makes you more sensitive to gagging, surgeries, procedures, new brother... But the truth is, if I wait until things slow down or get easier we will never work on it. The g-tube is just too easy, I have no great motivation to get you off it. So I was thinking if we went somewhere that would help us focus solely on feeds for awhile we might make some progress. I am considering taking you to an intensive feeding clinic. Really, I am just in the very beginning stages of research, so I am not sure when, where, or even how at this point. Usually they are 4-6 week sessions, so if we end up needing to go out of town, it will take a huge effort. Daddy will have to stay home to work, so you, Liam and I would have to go on our own. But if you have the kind of success I have read about, it would definitely be worthwhile. Even if you progress to where you eat enough during the day to feel full, we could still use the pump at night to give you the majority of your nutrition. That way we all could have so much more freedom during the day, not attached to our 6 foot “leash”.

This is just my newest thought. I am sure it will take awhile to get it covered by insurance and be accepted into the program. In the meantime, we have got to work on that neck! It is the first step towards becoming oral.

Friday, December 4, 2009

Snow Day!






It snowed in Houston, TX today! We got a few flurries last year, but this is the most snow you have seen. We just had to go outside to take a picture of Liam's first snow. So I spent at least 20 minutes getting you guys in clean diapers, warm clothes, bundled in blankets, and getting myself dressed before we headed outside...less than two minutes later we were back in the house. Liam hated the cold and the snow; in fact, he started fussing the moment I opened the front door and only became more upset from there. But you, my hot-natured girl, loved it! So after we made Liam suffer through a couple pictures, we put him to bed and you and I went back outside to play. You kept kissing the snowflakes as the came down, and every now and then opened your mouth wide as if to catch one. Too cute.





Tonight Daddy was able to come home from work a little early, and we had such a nice evening. I made gingerbread and hot tea, we lit a fire in the fireplace for the first time ever, and everyone snuggled on the couch planning to watch a movie. Instead we all were mesmerized by the fire--even the cats! A little bit later Daddy and I got distracted by rearranging the furniture. You were just relaxing on the floor by yourself, when all of a sudden you busted out laughing. I have no idea why you were cracking yourself up so much, but boy, it sure made us laugh also! For about 5 minutes you went on like this. I am so glad you are such a happy girl.



video

Wednesday, November 25, 2009

Time Flies

Goodness, it has been a long time since I have written to you. I couldn't even tell you what all we have been up to--just normal day to day activities, trying to survive I guess. We are somewhat settling into a new routine with Liam--fortunately he hasn't changed your schedule too much. What has thrown us off is sickness. A couple weeks ago you got an eye infection, so you have been on antibiotics which have upset your stomach (and bottom). Then last week you started cutting a couple more teeth. That is always a rough time for us, since it leads to fever, vomiting, diarrhea. Plus you have been so sensitive lately! Things that would usually never upset you have set you to crying as if you were heartbroken. I can't wait till all these teeth are in.

Last week we went to have another CT Scan done, and yesterday we went to TCH to get the results. Your ventricles have reduced in size. They are nowhere near normal, and our surgeon says they never will be. Still, they look better and he is very happy with the results. Remember, my biggest fear was that they would reduce too much and cause your brain to pull away from your skull. In nine months we will check up on you again. More good news...your hair is growing back much more quickly than I expected!

Sunday, November 8, 2009

Super Sister

video

You are so CUTE with your brother! Daddy and I agree that you definitely know there is something different about that little baby. You smile and laugh whenever you two lay next to each other. When you sit up to look at Liam, you get very peaceful, reach out to touch him, and do a great job of focusing your eyes on him. In fact, tonight you tucked your chin better than ever in order to get a good look at him!

Friday, November 6, 2009

Miss Independent

You like your brother. Really you do. He makes you laugh when he cries, spits up, or passes gas. But I think you are missing having all of Mommy's attention. Today when I put you down for a nap, you cried for over an hour. You don't ever cry when you go down for a nap. Even if you don't think you are tired, you just talk to yourself until you eventually fall asleep. This cry wasn't one of pain, irritability, or sleepiness--it was pure sadness. Which made me feel terrible. All I wanted to do was get you up and spend some time just you and me. If I hadn't been up all night with Liam and could have seen straight, I would have. Instead I laid in bed, exhausted and feeling bad, waiting for you to fall asleep.


I wish I could explain to you what is happening. I wish I could tell you that for now, you are the big girl, much more independent than Liam, and he needs more help from Mommy. But it won't be long until roles are reversed and you will have more of my attention again. Surely, the two of you will continue to cycle back and forth depending on what phase you are in at the time. I know it is hard right now for you though and I am sorry. Hang in there babydoll. Tomorrow Daddy will be home, and you and I can have some special time together.


You are such a sweet girl though. You would never hold it against me that you don't get as much one-on-one time now. You give me the biggest grins, just for picking you up or saying your name. Any attention thrills you. And today, for the first time ever, when I held you on my chest, you held me back. Just a little bit of pressure around my shoulder, but definitely intentional. Ironically, around 3 am this morning while I was burping Liam, he held onto me also. I teared up for a moment, thinking about you and how you have never been able to do that. I knew it would be no time before Liam could give me a hug, but didn't know if I could ever expect one from you. I had to quickly divert my thoughts so that my hormones didn't lead me down the road to a pity party. So this afternoon, it wouldn't have felt any better if you had wrapped your arms around my neck and given me a big squeeze. Just that tiny bit of loving was the best gift you could have given me.

Wednesday, November 4, 2009

Bringing Home Baby

Our first family picture.




Today we brought home a healthy little brother for you! You were in the waiting room when he was born, and met him shortly after. Then you came up to the hospital to spend some time with him the next afternoon. But today when we all got home, we put you two on the floor together for some "getting to know you" time.

My compassionate girl is no more--at least when it comes to Liam. I was so concerned you would get sad and pouty when he cried, just like you do for any other baby. No, you think your squeaky little brother is hilarious. When he starts to whimper and cry softly, you laugh, and when he revs up and cries loudly, you look...amused. In this video, he is spitting up and you just laugh and laugh. I guess you think it is funny when it is someone other than you!


http://www.youtube.com/watch?v=hpDQKH0b5lQ

Speaking of spitting up...I was afraid you were about to throw up all over Liam in this video. But then I decided you were just showing him who's the boss. At least you started out sweetly petting him...



video

Monday, November 2, 2009

Bowers, Party of Four

This morning Daddy and I are going to the hospital to have your brother, Liam. Grammy is on her way right now to be with you, and you will stay at her house over the next couple days.

I am excited to meet him, see what he is like. We decided not to do genetic testing, so while we can't be 100% sure that he doesn't have the same syndrome, we are pretty confident he will be a healthy boy. God has been so good to give me a peace throughout the entire pregnancy. I worried more about your health while I was pregnant with you, and I had no reason to suspect anything would be wrong. This time I am just trusting God, knowing that no matter what, Liam will be a huge blessing in our lives and we will get through whatever might come.

So while I am sitting here, calm about the delivery and the baby, I am nervous about how you will handle this big change. A month ago, I would have thought you would be oblivious to a new baby in the house. Having been deprived sight for so long, you can't see your surroundings well, and many things go without notice--or at least reaction. However, since the shunt surgery, you have improved so much, in so many ways. You definitely will realize there is some competition. And that is assuming (which I never do anymore) that he is perfectly healthy and we will come home right away. I am not sure what will happen if he has a NICU stay like you did. Regardless, your whole world is about to be flipped upside down, and you are sleeping sweetly and without a clue in the next room.

I love you SO much. Last night Daddy and I had so many last minute preparations, that we three didn't get to spend as much time cuddling like I was hoping. Today we will become a family of four, and I wanted to savor those last few hours as a threesome. Still, I have so many sweet memories from our first 17 months together. I used to think that it would have been better to have my SLO baby last. That way "family planning" (as if there were such a thing) would be easier. But I wouldn't change things if I could. I have loved focusing on you, and older children would have suffered had you come later. God knows what he is doing, that is for sure.

And for that reason, I will put my anxious heart to rest, give you a big kiss goodbye, and leave for the hospital with Daddy. Our lives will never be the same after today, but it's going to be good for everyone. You'll see.

Saturday, October 31, 2009

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!

Friday, October 30, 2009

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!

Monday, October 26, 2009

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.

Thursday, October 22, 2009

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.

Saturday, October 17, 2009

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.

Tuesday, October 13, 2009

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.

Sunday, October 11, 2009

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.

Thursday, October 8, 2009

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!

Wednesday, October 7, 2009

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.

Tuesday, October 6, 2009

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

Tuesday, September 29, 2009

September 29

We saw the neurosurgeon today, and decided we would have to have surgery to put a shunt in the ventricles of your brain. Going in, my gut told me this would be the case. Still, I was hoping I was wrong.

I brought the films of your CT Scan from June of 2008 and the doctor and I looked at them together for the first time. When he pulled up the pictures from your MRI a couple weeks ago, I knew at once it wasn't good. The fluid in your brain has increased significantly--even shockingly. His first question was about the stability of your heart. I knew what that meant...

There are two reasons you could have so much fluid in your brain. The first is that you were born with too little brain mass, or are losing brain mass due to atrophy. In this instance the fluid would just be filling in the empty places as it should. The second is just congenital hydrocephalus. In this situation, there is a malfunction that causes too much fluid to build up, putting pressure on your brain. This can cause a number of problems including developmental delays, headaches, poor vision, nausea and vomiting--many of the issues we face already. Without having seen the first CT Scan, our doc thought the reason would be the first, and that his recommendation would be to leave it alone. He changed his mind quickly when he saw the older films. I asked him which of the two options I should prefer, and he said that our situation is a better senario. It can be treated. But while it is clear that surgery is the best option, it isn't a sure fix.

There is a 5% risk of complications. Infection is always a possibility. I am more concerned about your "brain collapsing" as he calls it. When the fluid is taken away, the brain could pull away from the skull, causing blood clots, strokes, and more surgery. Logic tells me that the risk of this happening is most likely proportionate to how much fluid is drained, and in your case it is a LOT. Plus, our doctor can't guarantee this will fix the problem, even if surgery itself goes perfectly.

Some possible good other than the obvious release of pressure on your brain, is that maybe it will relieve some symptoms that I have always attributed to SLOS. This may be a long shot, since these symptoms are a part of SLO, but my hope is that it will help decrease the vomiting, increase your vision, and help your motor skills develop more quickly. Regardless, I bet it gets a lot easier for you to hold your head up when it isn't so heavy. It is clear to me now why we haven't made much progress in this area. You can't build your muscle strength in order to keep up with how quickly your head grows. And of course, you can't learn to sit or do much else until you have that head control down. And maybe too this explains why you still hold your head back so far. Since your head protrudes towards the back, all the extra weight is back there. Poor baby, and you try so hard. I wish I had thought to look into this sooner.

When we get news like this, I usually take it pretty well for awhile. This time I was ok until until a couple hours later when I was sitting in the back of the car with you on our way home. I was reading some literature that they sent home with us, and there were pictures of a brain with normal ventricles and a brain with enlarged ventricles. That's when I began to puddle up. Even the pictures of enlarged ventricles look normal compared to what I saw of yours.

I really hate that you need to have this surgery. You have always done beautifully for past operations, but it is never easy on you.

I hate that they will shave half your head--that's a stupid thing to care about, I know. But you are my baby girl, and I just do. We both enjoy fixing your hair--I wish you would just let me do it by myself though, cause you wind up pulling it out.

I hate the timing. There is always a fear with any surgery that something could go terribly wrong. But this time I have the added realization that my devastion might be harmful to your brother. At the same time, I know we need to do this before he comes because then I would have to chose between leaving you at the hospital or leaving a newborn baby at home. So we will probably schedule the surgery within the next couple weeks.

I hate that this is so random and unexpected. I have asked the other SLOS families, and no one else has this problem. I can't believe that in addition to having every characteristic associated with SLO, we are now making up our own. So frustrating.

After a good cry, it was time to move on. No sense in dwelling on the way things are. All I can do is enjoy my time with you, do my research, and pray. Already it is a God thing that we even discovered there is a problem. You were having your "freak out" sessions and I suspected seizures, so we scheduled the EEG's and MRI. But that was months ago, and you haven't "freaked out" since. If it weren't for the seizures, the MRI probably wouldn't have come up until your head was obviously too large and who knows what may have happened in the meantime. I guess God's timing really isn't so bad.

Sunday, September 27, 2009

September 27



This morning before church I put your hair in a ponytail--it was pretty cute before you layed on it for four hours. Aunt Shelby watches you and some of the other kiddos for the first hour of church, and when it was time to pick you up, this is how we found your hair--with two more matching rubber bands in it. Silly Aunt Shelby.


This past week we tried something new--watching TV! Most parents wouldn't be so proud of their kids watching videos, but I think it's so cool to see you paying attention. Of course, that attention span only lasts about a very short 15 seconds. Then your eyes wander, and your head flops to the side. But after a few minutes, you bring it back up to the screen again. And when you do, you smile! The only thing you have watched so far is Baby Mozart--you love music and it isn't super stimulating, so I bet you will love the whole Baby Einstein series. Daddy set you up a small TV that is on your level in the guest room, so that you don't have to look up so high. I am hoping this will increase your ability to focus, as well as encourage you to hold your head straight to see. You look so big sitting in your big girl chair!

Saturday, September 19, 2009

September 19


This is a picture of you watching Longhorn football with Daddy. You were allowed to stay up past your bedtime to watch with us, but at half time we put you down for the night. You will have to wait to hear the final score until tomorrow morning.

Thursday, September 17, 2009

September 17


My sweet baby. Every time we get something major taken care of and behind us, something else pops up. I feel like it will never end.
Yesterday we went to TCH for an MRI--here you are after getting your IV in your little hospital gown. Such a strong, brave girl. I had no idea an MRI would be such an ordeal! It was like a surgery, without the cut. We went through the same process including giving you an LMA. Usually they wouldn't protect your airway with intubation, but since you are a chronic vomiter, extra measures had to be taken. And with the LMA, they had to anesthetize you deeper than would usually be required. We spent a little time in recovery and then headed home. Yesterday evening you just wanted to be held, and had such a hoarse little cry and cough.
Tonight, a little before 10:00, Daddy and I were about to go to bed when his phone rang. We checked the voicemail and found a couple missed calls from Dr. Louis. I called her right back, knowing it couldn't be a good sign that she was calling so late. Sure enough, the MRI did not give great results. I was told the pictures showed fluid on the brain--when she got the results this afternoon, she was thinking she might have to call us to come to the ER for an emergency surgery to place a shunt. But after talking to a neurosurgeon who reviewed your test results, Dr. Louis said we have time to figure out exactly what is happening.
I did some research based on what she told me, and I think what you have would be called hydrocephalus ex-vacuo. Basically there is extra fluid in the ventricles of the brain, which has potential to put too much pressure on the brain. Usually this is the result of brain tissue loss, however Dr. Louis thinks maybe there was just never brain tissue there to begin with. I am unsure, because at a few days old we had an MRI and there was no mention of too much fluid back then. Tomorrow I have to order those test results so that we can compare.
The good news is that the fluid is symmetrical on both sides of the brain--this is why the neurosurgeon thinks we may not need a surgery. He said that if the pressure was too great, your head would be very large. While your head isn't super big, it is the only thing that has grown on somewhat of a normal curve. You are well under third percentile for height and weight--there aren't even stats for where you fall. But you are in the fourth percentile for head circumference. And even though your 0-3 mo clothes still fit your body, you can no longer wear several outfits because your head doesn't fit through the neck hole. Add to this the fact that MICROcephaly (meaning small head) is the norm for SLOS kids, I am concerned.
Concerned is an understatement. I am just so sad tonight. I was optimistic until I turned off the lamp to go to sleep--things always seem bleaker in the dark. That's when I decided to get out of bed, look up some medical info, and write to you. A little while ago you started fussing--usually I would never take you out of bed once you go down, but tonight, I just needed to hold you for awhile. Snuggling with my precious one always makes me feel better.
I would love to get good news back on theses sorts of tests more often. Rarely, if ever, has something come back with no abnormalities, and no concerns. It is exhausting and frustrating and my heart hurts. The thought of brain surgery scares me like you wouldn't believe--I don't even want to imagine what I would do if something went wrong. And if we find that surgery is necessary, the timing is much less than ideal. I need you to be at your best so that you can help me take care of your little brother when he gets here!
Even though I am sitting here with red, puffy eyes and tear-stained cheeks, I know that God has always given us the strength to cope with these tough situations. And so far, we have all come out better for the trials we went through. I know this one won't be any different. Sometimes I just wish He didn't want us to be so strong.

Sunday, September 13, 2009

September 13


video


You were laughing so hard at Daddy's kisses and snorting all the while! I sure do love this baby laugh!

Friday, September 11, 2009

September 11

Being such a good girl on your first plane ride.




You slept almost the entire time we were at the zoo.




Just as we were about to leave, you woke up in time for a photo op. At first you were a little uncertain...



...then you were pretty sure this wasn't enjoyable...





...then you were just plain mad. Still, this is one of only a few pictures of all three of us, and it kind of makes me laugh, so it made the cut.





You tolerated the elephant only slightly better than the carousel horse.




Sand in your toes!




We discovered you are not a "beach babe". We were on the beach for less than 10 minutes before your eyes became red and swollen. So we got our delicate baby back in the car and went to lunch!



You provide lots of entertainment for Daddy and I.



I was trying to convince you to eat a fry at a Greek diner we went to--I think you knew exactly what I wanted. When the camera was out, you ignored the fry, but each time I turned it off, you would hold the fry to your mouth with a little smirk.





Daddy's little girl.

Tuesday, September 8, 2009

September 8

Last week found us in Florida on vacation, and having a fabulous time! Mema was dogsitting for family friends while they went to Ireland and we came along too. Mema’s friend Cindy was there as well which meant that you, Daddy and I were able to spend a lot of special alone time together.

You did amazingly well on the flights there and back. I was nervous because I wasn’t sure how your cleft palate would affect the pressure on your ears, but it didn’t seem to be a problem at all. On two of our flights (we had a layover in Dallas both ways) you didn’t make a peep, and on the other two you only fussed a little because you were sleepy or nauseous. I was so proud of you, as always.

We did a few touristy things like the zoo and beach, but for the most part we relaxed and cuddled together, just the three of us. Daddy really needed and deserved a vacation. He works harder than anybody I know. He wakes up super early to go to the gym, then he puts in 9-10 hours at work. When he gets home he plays with you, gives you a bath, pulls meds, takes out the trash and does whatever else he sees that needs to be done. He really only rests to eat, and then go to bed. Such a good hubby and a good daddy. I know he enjoyed his work/chore free week to spend with his girls!

And you LOVED having Daddy around all day. It amazed me how full of smiles and giggles you were all week—it seems like you just thrived under all the constant attention you received. Although you and I stay home together all day, there are plenty of times when I need to get things done and you have to “entertain” yourself, which is really hard for you to do. With so much Mommy and Daddy time, you were just the happiest girl. In fact, there were several times when we would catch you smiling, laughing and talking to yourself while you were hanging out on the bed or while we were driving from place to place.

We hadn’t attempted a vacation before now, because we weren’t sure it would be worthwhile. This was the perfect test since Mema was there to help us out if we needed it. And she did help us a lot. Daddy and I were able to go to dinner and several other things around town by ourselves, while she stayed home with you and we were so grateful for that alone time. But had she not been there, I know we still would have had a wonderful time, so we will definitely do it again. Still, this is our first and only vacation as a threesome—next time we go on vacation we will have a little brother with us!

Sunday, August 30, 2009

August 30

Over the last week Daddy and I have gotten glimpses of our happy baby again! It seems as if there has been a break in your teething, although I can tell it will be short lived. There is already another tooth straining to break through. But we have enjoyed seeing your toothy grins in the meantime! You think the strangest things are funny like when I type on my phone or laptop, kissing your hand, blowing in your hair....sometimes nothing at all. Everything stops when you are in one of those giggly moods, and Daddy and I do whatever we can to keep it going!

We went to the dentist on Thursday. While it wasn't a pleasant experience, it was quick. He looked in your mouth for 30 seconds, you threw up for several minutes, and then we talked for just a minute. He says things look normal for a tube fed baby, and most importantly, healthy. I asked him when these baby teeth developed (in utero) and when your adult teeth start to form (right after birth). I am hoping your adult teeth grow in better since they will have had the benefit of your cholesterol supplement. We go back in 6 months.



Grammy and Papaw got a new dog today--she doesn't have a name yet, but she came over to see you this evening. She is half golden retriever, half black lab, all puppy. We saw the golden side of her when she sweetly came up to you, nuzzled your hand, and cuddled up to take a nap with you. We saw the lab side when she tried to eat your g-button through your shirt, chewed on your toys, and stepped on you. You and I are trying to convince Daddy to let you get a dog...I think these pictures of you and your new buddy may help!




Wednesday, August 26, 2009

August 26


Tonight at church all of the kids dressed up as God's Princes and Princesses. You were no exception, and you felt pretty! Here you are with two of your favorite people, in the tiara they gave you.


You know, as sweet as you are, you are still an intimidating baby. Between your feeding pump, your vomitting, and other issues, I imagine it can be stressful for those who work in the nursery to care for you. But never once at our church have we been made to feel like you were a burden on them. In fact, we all feel so special when we show up--they obviously love you so much. They go out of their way to make sure you have the attention you need, and I am so grateful we can leave you with people who feel comfortable with, so that we can go to church without worry. We love Mrs. Elaine, Mrs. Shanna, and all our teachers!

Friday, August 21, 2009

Blog Picture - 1 Year Old


Each year I plan to change your blog header pic with a new photo of you and Lambie. I think it will be fun to watch you grow in relation to Lambie. Already you seem so much bigger than in your photo from in the NICU that has graced the top of the blog up until this point. Sometimes it's hard to notice your growth since it is so gradual. But there is no denying you are growing!

I am a little late this year...I hope to do the next one on your actual birthday!

Look at how irresistible you are, cuddling Lambie close as you drift to sleep (well, drift as best you can while Mommy is taking pictures of you). Sleep sweetly...and long...and straight through the night....

Thursday, August 20, 2009

August 20

Two weekends ago Daddy and Papaw painted your new room—that’s right, a new room! You get to have a room further from Mama and Daddy, with more space, and with a big girl closet--you outgrew your little armoire months ago. It is easy for you to accumulate lots of clothes since you still fit in your 0-3 and now also 3-6 months…and since Mommy has a hard time passing up a cute, inexpensive outfit. I figure you will wear it for at least a year so it is a good investment!

You need the extra space, but more than anything we need to start making room for Little Brother, so this past weekend Daddy and I (mainly Daddy) moved you down the hall. Even though it is all your same stuff, it took you a little time to adjust—the room smells and sounds different. Plus, your nightlight and window shine at you from a different angle, so you can definitely tell you are someplace new. But now I think you like it fine…Mommy likes it because the new room gets less light during the day, so you take better naps. Better naps for you mean better naps for me!

Pretty much all done, just needs a few finishing touches. There are curtains, photos, and wall art from your old room that need to be brought in and then you will be set!


I love these words over your bed—you ARE our miracle baby! (And you ARE a little girl!)

Wednesday, August 19, 2009

August 19

We took our weekly trip to the med center yesterday, this time to see GI. I was hoping he could give you a med to increase motility and decrease the vomiting, but no such luck. The meds on the market these days aren’t effective enough to justify the risk of side effects. While there, the results of your EEG came up in our conversation, and I found out that your test did not show normal results at all. There was no focal seizure point, since you didn’t seize during the test, but there were “curious abnormalities”. I am totally disappointed, but not even a little surprised. Many SLOS kids have seizure activity, and with the way you have been acting, I couldn’t think of another possibility. So I made a trip upstairs to see our pediatrician and she is going to try to get us in to see neurology sooner than January. The good news is that you are definitely done with dilations! Daddy doesn’t have to probe you, hopefully, ever again. In fact, we don’t even have to go back to see Dr. Kim for 12 months. We love Dr. Kim, but we will be ok with not seeing him every clinic he has!

Tuesday, August 11, 2009

August 11


Today you created your first artistic masterpiece...AND most of the paint was kept on the paper! Here it is, in its rightful place on the fridge. Good work!

Sunday, August 9, 2009

August 9

We got your EEG results back last week--no sign of seizure activity! And while that is exactly what I was hoping to hear, it gives us no clue as to what your "freak outs" are about. Since you didn't freak out during the EEG test or the few weeks leading up to it, so I can't be 100% positive that it isn't a seizure. But of course, in the week since we received the results you have done it many times, every day. I scheduled an appointment with neurology, but the soonest we could get in is January--five months away! So tomorrow I am going to call Dr. Louis, our special needs pediatrician, and see if we can get in sooner, and maybe repeat the EEG.

The past month our home has been tormented by teething. Ugh. We officially have six teeth on bottom, and none of those were too bad. But over the past few days a top tooth has finally broken through (two have been on the cusp for months) and it has been torture for the whole family. There isn't much we can do to comfort you since you won't tolerate a teething ring or anything else in your mouth. You constantly want to be held, and even when you are it doesn't seem to make you feel much better And to make things worse, with the teething comes extra mucus, which you gag on and then vomit. Orajel also makes you vomit because of the strong flavor and extra saliva. Unfortunately, all this has caused you to lose weight over the past month that you didn't have to spare! I know teething is a rite of passage every child and parent must go through. But it seems like such a waste since you won't actually use these teeth for a long time, if ever. What a bear you are! Fussy all the time and not very willing to smile. Ten surgeries, and not one of them caused you to act like this! Not that I blame you--it looks very painful. Your gums are red and swollen, and your teeth are coming in very crooked, jagged and SHARP. I am sure the the lower teeth hurt your upper gums when you bite down. We have a dentist appointment towards the end of August. We will see what he has to say about those chompers of yours. In the meantime, hurry and pop those little guys out so that we can go back to having fun!

Tuesday, July 28, 2009

July 28


Today we went to Texas Children's to have an EEG. We won't get the results until probably Friday, but I have to tell you how cute you were the entire time.

To set up for the test, a wax pencil is used to make marks on your head for where the electrodes should go. You thought that was funny and laughed the whole way through. Then our technician just fell in love with you. We were almost finished putting all 23 electrodes on your head when you started getting cranky. It was naptime anyway, and you'd had enough. At that point she told me how she is usually pretty good about distancing herself from the kids who come in to see her. But that very rarely there is a child she just connects with, and it is those kids that make her job hard. She said you were one of those kids, and felt the need to tell me that her hands were shaking because she felt badly for making you cry and because she was anxious for your results, not because she was new at her job! I thought that was funny because I hadn't even noticed shaky hands.

I don't know what it is about you that people are so drawn to. Of course, I know all the reasons I love you so much. But even strangers who don't know your story (like our technician today) fall for you so easily. You are a beautiful, precious girl--every time you smile I tell you so. This happens so often that you have begun to associate the word "pretty" with smiling. I can say, "Where is my pretty baby?" and you will give me a big grin. But being honest with myself, I know you have characteristics that society doesn't appreciate. You hold your head awkwardly, have a bad eye that isn't properly aligned, and a "pug" nose that I can often see straight up. So I don't think it is your appearance that people are attracted to. It must be Jesus in you, giving you such a sweet disposition. Otherwise I can't explain why the people we pass while out stop us to talk to you, why doctors tell me that they go home and think more about your case than any other, why people who I only know because of you would do backflips to give you what you need.

When the test started you were such an impressive baby. The strobe light flashed in its different frequencies and I know must have been obnoxious to you because it was even to me. But you were very calm and watched like you were supposed to. Then we turned off all the lights so that you would take a nap. You had a different plan; after an hour you still wouldn't fall asleep. I was so surprised since it was way past your bedtime, but I think it was probably too quiet for your liking. You have slept with your ocean sounds since we came home from the NICU and without it you get fidgety.

So we finally gave up and started taking off all the tape and electrodes. Our technician was bracing herself for you to be upset when your hair got pulled. As always, you surprised the experts and didn't fuss even a little! She said in seven years you were the first! Such a strong baby girl.

After everything was out, your hair looked CRAZY from all the glue, tape and alcohol that was put on your head. Daddy and I had an interesting time trying to get you cleaned up!


Daddy said, "Mommy, next time wait till I am OUT of the bathtub before using the hairdryer!"



I think you knew how silly you looked.


Sweet, clean, sleepy-cause-you-never-took-a-nap baby!