Still Giddy

This picture has nothing to do with anything, but I know it will make my Bala happy.
And that has everything to do with everything :)

Just had to mention that I'm still so super excited about the news we got regarding Charlotte's eyes. I mean, seriously? So happy about it.

I'm in a "grab my hands, jump up and down, yell, 'Yayyy!!'" kinda mood.

Apparently this post has nothing to do with anything as well.

Eh, it happens.

Uncooperative

We had an upper GI/ G-tube test done yesterday. Basically they insert Barium into Charlotte's belly via the G-tube and see where the barium goes through an x-ray technique called fluoroscopy. Fluoro is a continuous x-ray (kinda like if you had x-ray vision) so you can see all the stuff moving around on the screen.

Charlotte was an angel and performed beautifully during the exam, except for the fact that we were trying to see what her insides look like when she is gagging and refluxing. So just to be ornery, she was totally fine. Once the doctor was certain she didn't have any problems with her nissen, he turned off the fluoro and we placed her back in the stroller and got ready to leave.

Pretty much the second the doctor left the radiation suite, Charlotte started gagging and choking.

Nice.

Way to work with us kid.

The upper GI did show that her nissen is intact. We still don't know why she's having such a difficult time with her feedings, even those delivered via the tube. We have a swallow study (yay for more radiation!) on Friday. The upper GI gave us an image of what happens when food is already in the stomach, the swallow study will give us image of what happens while food is going from the mouth to the stomach.

We also have an endoscopy scheduled for the 17th of December, which will give us a better idea of the actual structure of her throat and vocal cords (which has a lot to do with how well she swallows).

She's Home!

Peter was able to talk the doctor into letting us run more tests on an outpatient basis, and since she didn't have an infection, there was more of a risk of her catching something in the hospital.

The current theory is that Miss Charlotte out grew her diuretic dosage and her lungs got a little wet. It's also possible that she was refluxing and is micro-aspirating again. (darn aspiration never goes away, does it?)

Who knows. Important thing is, she's home!

Unfinished

Part of the problem with being premature is that most people see a tiny baby. What they forget is that a premature child is not just tiny, that baby is in essence, unfinished.

For example, when Charlotte was born, her ears were just flaps of skin. There wasn't anything that "formed" an ear. I've watched her eye lashes and eye brows grow in. We often comment that she was a much easier stick (for blood draws) when she was see through. Charlotte has scars from where monitor leads tore open her skin in those first few weeks. She was so sensitive, her "hands on care" was scheduled, so that all physical contact could be done at once.

What's sometimes forgotten is that it's not just her eye lashes and her ears that need to develop more. It's her lungs, her eyes, her brain, her skin, her organs, her everything. And since a premature baby, especially a micropreemie, is taken from that perfect environment for development too early, it takes a long time for them to catch up.

Most families know of the "six week" guideline for newborns, aka, keep your baby inside and away from crowds for about a month and a half. (Full disclosure, I totally ignored that with Caleb-- I know, mother-of-the-year here. Took him out in public about three days old. In December. RSV anyone? Awe.some.) With Charlotte, we are advised to keep her from large gatherings until after her second winter. At least. See? A long time to catch up means two years vs six weeks.

Since these babies come into the world in a rather incomplete state, their immune systems are practically non-existent. Charlotte's doctor has absolutely forbidden us to have anyone in our house that doesn't have a flu shot. Her reason? It could very easily kill Charlotte. Not make her sick for a week or two, not put her in the hospital, but kill her. It wouldn't just make her "oh my baby is sick and I haven't slept for a week" kinda sick, but "on the ventilator and in the PICU fighting for her life" kinda sick. Think I'm being dramatic? Read this family's story. And Charlotte has had her own flu shot. In fact, her insurance spends about $1,000 every four weeks giving her a shot that will help protect against RSV.

Premature children also have a difficult time keeping up physically as well. Since they were taken from the amniotic fluid so early, which is where the majority of bone development and nervous system development occurs in children, they tends to be delayed. It is not uncommon for a micropreemie to learn to crawl at two years old, and learn to walk by their third birthday. It's a fairly real possibility that preemies will need medical devices to help them learn to sit up, walk, eat, roll over, stand, etc. It's also not uncommon for preemies to meet developmental milestones out of order. For example, a preemie might be able to walk before he can stand up on his own. The core strength that it takes to stand still might be too much for him, even though he can stay upright while moving.

Among many other unfinished parts of preemies is their parents. We're kinda crazy. It happens. When you've watched your child develop right before your eyes, it changes you, in a way I can't fully explain. Keeping your child safe is more than a parenting aspect, it becomes a full time job. And sometimes, we see it that way. We forget that others haven't spent hours upon hours researching conditions, treatments and outcomes. We forget that our children are also cousins, siblings, grandchildren, nieces and nephews. We forget that we're allowed to simply be a mom or dad. We spend so much time being nurses, therapists, doctors and researchers, that we forget what it can be like to just rock your child to sleep.

Because just like Charlotte's skin at birth, there's a part of us that is still raw. Still fragile to the touch, still too delicate. Eventually, that part of us will heal, just as Charlotte is now. But our development is delayed, our progress can be stunted.

Micropreemies and their parents-- we're all just a little unfinished.

She Has A Following

We had to take Miss Charlotte Amalie into the hospital late Friday night/early Saturday morning. Her oxygen demands were increasing and since our oxygen regulator only goes up to .5L we had to take her in. She's doing well-- we're not sure what's wrong, but she's definitely not as sick as the past hospital admissions. Who knows, maybe it's yet to come, but so far, she looks pretty good. She's requiring more oxygen and isn't tolerating her feedings as well. She's also retaining water a bit. So it could be a few different things, infection, wet lungs, more aspiration, etc. She's also got a lot of air in her belly, which is causing discomfort.

When being seen in the ER, she had several of the nurses come in to see her. She's only been in the ER twice, but they remembered her and were all excited to see how big she had gotten. Three of the residents she has seen so far had cared for her previously. She's starting to get a following at CHOP. The ER attending said she felt left out since she hadn't met Charlotte before.

They've scheduled some tests for her on Monday, so unless she shows impressive improvement tomorrow, she'll likely be at CHOP until we get the results back, likely Tuesday. If she does show improvement, we're hoping we can convince the doctors to let us run the tests outpatient. They've already shot us down twice, but hey, it doesn't hurt to keep asking, right?

In The Clear

Charlotte has had three eye surgeries. Two to stop blood vessels from growing out of control in her eyes and one to reattach the retina in her right eye. For a few days this summer, we worried whether or not she would even be able to keep her retina (It's a rather important part of the vision process). Over 50% of children who have Charlotte's condition lose eye sight completely in at least one eye.

In July, at the time of the surgeries, we were all hoping, praying, that Charlotte would be able to see light and dark. That she might be able to view outlines of objects. We thought at best, she would have severe nearsightedness and minimal peripheral vision. These were our best case scenarios.

As she spent more time at home, we noticed her tracking items, voices, and people. She is fascinated with the TV. We were pretty sure that our best case scenario was true. We were thrilled. Charlotte could see. We knew she would need glasses and that she'd need therapy to help strengthen her vision, but she.could.see. It was more than we could ever imagine.

Today, the eye doctor informed us that not only can Charlotte see, but she is not near sighted at all, and she doesn't have any range of vision problems. He's going to keep watching her, at little more closely than he watches other preemies (because, you know, these kids are never, ever to be trusted) but he is thrilled with her.

We're not even starting vision therapy. She doesn't need glasses.

Miracles continue to happen.

The "End" of Prematurity Awareness

November is over.

Which means all the trite little facts and posters regarding Prematurity Awareness Month will go away.

The problem is, those facts don't stop being facts just because an awareness month has ended.

1 in 8 children are born premature, yes, even in December.

In the USA, about 7.5 babies are born each minute, from January to January.

That means, almost every minute a baby is born premature, every hour of every day of every week of every month of every year.

Prematurity is the number one killer of babies-- every day of every year.

It's nice to have a month to focus on prematurity. I appreciate every opportunity to increase awareness, to help others understand this crazy world. I think it is important to have a time of year that everyone is focused on a topic. However, just because November has come and gone does not mean that we get to stop taking Charlotte to doctor appointments. It doesn't mean that parents get to stop burying their children. It doesn't mean that therapists stop working with severely handicapped children. It doesn't mean that parents stop worrying or that neonatologists can stop working. It doesn't mean that NICU's are empty.

Prematurity doesn't end when Prematurity Awareness does.

Which means, we're not going anywhere.

Lucky you, huh?

:)