Smiles, Crazy Hair, and Siblings

One of Charlotte's therapists thinks that she should become the poster child for CHOP. Think there is an agency for medically needy pediatric models?

Do you see that hair?

I love these two. That's all.

We're on vacation this week in North Carolina with my paternal grandparents, my parents, my siblings and their children. It took our family two vehicles, a nurse, 8 oxygen tanks and lists upon lists upon lists to get everyone prepared to be here, but we're having a great time. Charlotte is spending her days watching her cousins run laps around everyone (we have three 3 year olds here!) but so far, so good.

We'll have plenty of stories and pictures to share when we return!

The Farr Side

(My maiden name is Farr)

Charlotte had a busy, busy week last week.

For reference, Charlotte had her GJ tube placed initially on March 1. By April, she had to have it replaced three times. We went in on Tuesday for her fourth replacement. At this point Peter and I were pretty sick of this contraption called a GJ tube. Her nurses hated it. We would have gone back to the G tube button if not for the fact that Charlotte's doing a lot better with the feedings going into her jejunum. Darn kid and her medical needs.

So yeah, Tuesday I made a plea to please, please, please place a button. They smiled and nodded and politely said, "Umm, no." IR said GI wouldn't let them place it and GI said IR wouldn't do it. So I walked on down to GI and said, "IR will place the button if you will sign off on it." They weren't too happy about it, (CHOP wants all babies with a GJ button to be at least 10 kilos, Charlotte is 9) and they went into all the horrid things that could happen. The problem is, Charlotte is getting a nice ol' dose of radiation about every two weeks at this point. I'm willing to take my chances. Plus, I know a few 9 or 10 pound babies (pounds... not kilos) who have the GJ button. I'll try anything at this point.

On Wednesday, IR called and said the next time Charlotte needed her tube replaced, they would try the button. Charlotte apparently heard this because Wednesday night she yanked that thing right out. Yupp, twice in three days. Awe.some.

We had the button placed on Friday and so far, so good. We're really, really, really hoping this works better than the PEG/NG tube combination.

Charlotte also had her eye exam on Friday. Last time we were there, the eye doctor was shocked at how good Charlotte's vision appeared to be. After a child experiences retinal detachment, the assumption is that they will have significantly impaired vision. At her last appointment, Charlotte was not even showing signs of being near sighted (the typical problem for children with ROP). At this appointment, Charlotte tested being a little far sighted. The eye doctor felt that this is probably the "normal" far sightedness that most children experience. However, once she starts moving (crawling, rolling, or walking, whatever comes first) her vision might make things a little more complicated. So he's keeping a close eye on her (haha) and referred us to a good ophthalmologist in San Diego.

Oh yeah, Charlotte stopped breathing last night. It was awesome. Yay for Ambu-bags. {She's fine, she just had a severe apnea event. Reminds us that the CPAP really is important for her}.

And that was our week!

On a Lighter Note

I like to follow those sappy posts with something a bit more light hearted. 

For your viewing pleasure, I present: Charlotte's First Swing Experience.

The Future

I'll be honest.

I worry about Charlotte.

I worry that her next appointment will be the one with the horrible news. I worry that they missed something at the last appointment. I worry that the doctors are watching for things but not telling me. I worry that I am missing something. I worry that she'll never talk, never walk, never participate in life the way that a mother wishes for her daughter.

These worries are not all encompassing. It's not what I see every.single.time I look at her. Rather, they are the fleeting thoughts that rush through my mind when someone says, "Next year, at this time..." or when someone mentions a milestone to meet or a hurdle to jump over.

Next year at this time, what? Will she eat? Will she crawl? What will be her next diagnosis? Will she walk? Will she still be sitting there smiling at us with all her tubes and wires? Will she be off of the dang oxygen? Will she be able to talk? Sign? Pick up things with her fingers? Bang two objects together? Shoot, will the girl roll over?

How about in five years? Will she be able to go to sleep overs? Will she go to school? Will she still have a tube, oxygen, medications or CPAP? Will she be done with therapy? Will she have braces or a wheelchair? And in ten years, or fifteen, or twenty? What then?

Now in reality, I know that most of these questions are silly and not applicable. And I know that if she doesn't do any of these things, we'll be just fine. We'll make it. And so will she.

I also know that Charlotte is doing so much better than we really have the right to hope for. She's alive, and anything she does over and above simply staying alive each day is a miracle. Seriously. She had an 11% chance of survival with a moderate to severe disability. She beats the odds every single day.

And yet, I struggle, as I fall asleep each night, thinking of the things that could go wrong. The things she might miss out on. The moments she won't have.

Maybe we all stay up at night worrying about that. Because, isn't that the struggle of all parents? We want everything for our children. Full term, autistic, healthy, disabled, or angles in heaven, we all just want our children to have it all. Sometimes we don't get it, sometimes our children, just don't get it all. It's coming to terms with that, and figuring out how to adjust to reality that makes us parents I suppose. 

But in the middle of the night, with a nurse downstairs, a feeding pump alarming and a CPAP machine whirring, those worries seem so much larger, so much more intense. So much more personal, isolating, and terrifying.

I guess I'm just trying to say "thank you." Thank you to this community of Charlotte supporters for getting me through the night. For giving me the knowledge that when it all comes crashing down (as life inevitably does), Charlotte will have more than me to hold her up.

Because you might not be her parents, but you are her future. That knowledge sure does help me sleep.

Seriously?

For reals.

Charlotte just pulled out her J-tube. Again. Looks like we're headed to CHOP tomorrow.

How soon can we get a button?

Back In Action

 OK, so Peter's not very good at keeping the blog up to date :) He's pretty good at other things though, so we'll keep him around.

I spent the last week driving across the country with my mother and our three year old son, Caleb. I wasn't sure we were going to make it out there alive, but to my surprise, my mother was rather well behaved. Just kidding! My mother was our life saver and Caleb was a perfect child. I was very, very, very lucky.

When I left, Charlotte was still in the hospital. Since we knew that they didn't want to do the surgery to remove the tonsils, and she wasn't technically "sick" I figured I should go ahead and keep going with my plans to drive our car out to LA. (Peter is going to be a pediatrician after all-- he can probably handle it. And I may or may not have made him go to San Diego for a month long rotation on the same day Charlotte was admitted to the PICU in September. It would have been *slightly* hypocritical of me to stick around.)

Peter spent the rest of the week in the hospital with Charlotte; an experience which will certainly help him to be more sympathetic to parents in the hospital when he is a pediatrician. Charlotte kept him there a little longer than we had planned for several reasons.

First, they were able to slip her in to the pulmonary floor to be fitted for CPAP. Luckily after about two nights, she seemed to get used to it and has been doing well with it. Since there isn't an obvious reason for Charlotte's OSA (obstructive sleep apnea) the doctors wanted to check to make sure it wasn't a malformation of Charlotte's brain stem. Or something like that. Apparently there can be a problem with the brain stem which causes OSA. To check for this, they had to get an MRI. Since Charlotte is little and doesn't respond to commands well, she needed to be sedated. Since she has an oxygen requirement, the sedation needed to be general anesthesia. Yupp, back on the ventilator for an MRI.

Luckily Charlotte did really well with the MRI and the anesthesia. While she didn't have the malformation they were looking for, the MRI showed that Charlotte had an infarction in her posterior inferior cerebellar artery. Basically, she had a stroke.

Let me tell you, it was a long wait for the neurology consult. I was driving across the Kansas/Colorado border and the general desolation (sorry for all y'all who live there...) wasn't helping the wait. Finally neuro came to see Peter and Charlotte and explained that since there was cerebral spinal fluid in the space this was an old injury. Apparently, it takes time for the blood to dissolve the brain tissue and for spinal fluid to fill up the space. Since we don't know when this injury occurred, we don't know much about how much it will affect Charlotte. The neurologist assumes it happened very early in life. The thinking is that Charlotte's brain was still extremely plastic-- meaning it was malleable enough that it could re-wire and no lasting damage in terms of function has occurred. As we age, we lose this plasticity, and damage to our brains causes more and more long-lasting impairment. Luckily, Charlotte's not too old just yet :)

If this stroke was to cause impairment, it would affect her mobility, swallowing ability, and her speech. Since these things are typical micro-preemie problems, it will be very difficult to tell what is due to her prematurity and what is due to her stroke. Flip a coin.

The other thing holding them up in the hospital was Charlotte's oxygen requirement. We were hoping that with the assistance of CPAP at night, maybe Charlotte could come off of oxygen during the day. They trialed her for one day off of oxygen and she did really well. However, the pulmonary doctors consulted with Charlotte's pulmonary hypertension doctors who gave this plan the axe.

Apparently, Charlotte's heart is still working a little too hard to keep her body full of oxygen. The oxygen in her case isn't to keep her blood oxygenated, rather, it works to decrease the pressure in her lungs (oxygen is a vaso-dilator) and allowing her heart to pump a little less. Without the vaso-dilating, Charlotte's heart can actually re-build itself in a damaging way. This damage can become permanent and can cause death (this is pulmonary hypertension). Charlotte is many, many, many steps away from this level of severity, but we're keeping her on the oxygen to keep her from getting any closer.

So that's that! Charlotte came home, CPAP and all, on Saturday. She's rocking an awesome faux hawk from the CPAP at night. I'll post a picture later. It's seriously the best example of hat hair ever.