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!