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Wednesday, January 26, 2011

An Update

I haven't written a post like this in awhile, but for recording keeping sake, here's Charlotte Amalie's latest medical run-down:

Weight: a whopping 7.8 kilos (17.5 pounds)

Length: 63.5 cm (25 inches)

Eyes: Her left pupil still dilates differently than her right (scaring nurses who meet her for the first time, and neurologists) but we now know that the eye is related to the paralyzed vocal cord. We have our next follow up in April, and hopefully she'll still have a clean bill of health.

Vocal Cords: Left is still paralyzed, but she's making great improvement with how well she is compensating with the right vocal cord. We've started actual speech therapy (not just feeding therapy with the speech therapist) and we're slowly introducing sign language. She will be re-scoped in March

Lungs: Charlotte fluctuates from needing 1/8 to 1/4 O2, depending on her heart rate and her oxygen sats. She needs 1/4 a night about half the time, but can almost always be weaned down to an eighth by morning. She's still taking her diuretics to keep her lungs dry, and also has a few inhalers that keep her open and breathing. At her last pulmonary appointment they said she is currently better than she ever has been. Awesome! We're thinking that after RSV season, we might just be able to kick this oxygen. So maybe around May? We sure hope so!

GI: Charlotte's now on 20 hour continuous feeds. She's doing so so so SO much better on the continuous feeding than she was on bolus feeding. We have an appointment in two weeks to meet with the Complex Care Center at CHOP and we'll decide then if we want to start condensing her feeds again or if we're just going to roll with the continuous feeds. We believe that if she can just make it another 9 months or so, she'll be developmentally much more capable of handling the reflux and such. So we'll decide if we just keep plugging along for another 9 months or if we try to handle the reflux now. Handling the reflux now means another "event" is possible and she's more uncomfortable, but it's much more physiologically "normal" for her to have bolus feeds than it is for the continuous feeds. The continuous feeds help her reflux, but they stunt her gut and stomach development. So yeah, flip a coin. Any suggestions?

Developmental: Charlotte is capable of rolling over, but I wouldn't say she's rolling over. She's done it a few times, but it's not a daily occasion.  She's also capable of sitting for 20 seconds or so. These are our goals to master by HER FIRST BIRTHDAY (holy dang, it's a month away!).  Cognitively she's doing well, tracking and interacting and playing a lot more than she used to. It's amazing how quickly skills develop. We're also hoping that by her first birthday she'll be passing toys from one hand to another and that she'll be able to reach out and grab something more efficiently. Currently she reaches for things, but she has a bit of a hard time actually grasping things in an efficient manner. We're working on it :)

Medicines: Daily: Aldactone 2xday: Prilosec, Diuril, Flovent, KCL 4xday: Erythromycin PRN: Albuterol, mylecon, tylenol

Notice how I didn't label anything Oral or Feeding? Yeah, that's because she's not doing it. She'll put her hands in her mouth, and she's much less sensitive in regards to her gag reflex, but still nothing by mouth. Another goal for her first birthday, I suppose.

And that's our girl. Medically speaking, of course.

Monday, January 24, 2011

For Laughs

Charlotte is really a happy baby, even when in the hospital!

Sunday, January 23, 2011


Charlotte is a Steelers fan. In case you were wondering.

Edited for pictorial proof.

Saturday, January 22, 2011

Input vs Output

Charlotte is doing well with her continuous feeds.  She has a bit of a cold right now, (thank you hospital), but has been maintaining her sats and hasn't developed a fever.  We think that she's far enough into the cold that if it were to get worse, it would have done so by now, so we're hopeful that this will pass without too much intervention.

Her continuous feeds run from 11pm until about 9am, when she wakes up and plays.  We give her about a 2 hour break and then run her feeds during her nap, give her another 2 hour break and then start her feeds again, which run until 11 pm. 

What does this mean?

We're changing a lot of diapers, people.


Just sayin'.  This girl, dang.  And since she will probably grow up one day and read this, I'll leave it at that.  But seriously.  A LOT of diapers.

Have I mentioned we use cloth diapers?

Yeah, without a doubt, our nurses hate us.


Thursday, January 20, 2011


Charlotte was released from CHOP and is now residing happily at home. She's currently on 20 hour continuous feeds, and gets four hours of freedom during the day. She's also taking miralax and erythromycin to help with gut motility.

Yum, yum.

Thank you all for your words of encouragement and support. We truly do appreciate every single comment, suggestion and virtual hug. You all deserve a great big pat on the back for this one. And for each and every moment of the past 10 1/2 months.

As sincerely and genuinely as possible, I thank you.

Tuesday, January 18, 2011

Eating 24/7

Seriously. Charlotte's eating 24 hours a day. Well, she is currently at least.

And so far, so good.


She's gone about six hours without having a retching or gagging episode. We'll let you know how she looks in the morning.

Trial Run(s)

Yesterday, we tried moving Charlotte to a different feeding regimen. They increased her calories per ounce and decreased the length of her overnight feeds to see if that would help her reflux. It didn't seem to make it better or worse, until this morning, when she puked all over everything during her bath. At least she was already naked, right?

Now they are trialing a regimen that requires her to be fed for 20 of every 24 hours, but still through the g-tube. If that doesn't work, we will seriously have to consider a J-tube.

She's also requiring suppositories since she hasn't stooled on her own since last week. That could be contributing to her feeding intolerance as well.

Of course, through all of this, she's the happiest, baby around. She smiles at everyone who enters the room and giggles uncontrollably when someone comes over to talk to her. 

She has started back on a medication to help her gastric emptying. Even though the scans showed it to be normal, her physical presentation shows something different. Her doctor today basically said we are now outside the realm of science, and we're just going to wing it. Rock on Dr. Maverick, rock on.

So yet again we are here, asking for prayers and good thoughts for our little gal. Although the J-tube is not a huge deal (just a procedure done in Interventional Radiology) it is a big lifestyle change, and would mean significant therapy and feeding difficulties in the future. We're really hoping our little gal can find a way to work through this feeding intolerance and that her doctors can find a solution to her reflux.

Also, we really just hate being in the hospital, so we might have some ulterior motives here.  Just maybe.

Monday, January 17, 2011

My World

For the most part, I truly believe we lead a "normal" life. (That which is abnormal is typically not because we have a micropreemie, it's just because of us). But there are always those moments that it hits me. I'll be doing just fine, and then a friend will mention that they don't want to get pregnant because it's inconvenient, because they like the life they currently have, and I cry.

I will never get pregnant again because another baby will most likely not survive. And very possibly, neither would I. (And because my OB has threatened to kill me if I do get pregnant... that always puts a damper on it).

Sometimes it's when people mention the milestones their children are reaching, or when they talk about going to the grocery store with their kids in tow. Every now and then, it is the sight of a child who is way more advanced than Charlotte, despite being chronologically younger.

But most often, it's the simple things. The way Caleb says, "Charlotte is at a doctors appointment" or "Mommy, Miss Charlotte is playing with her oxygen!" It catches me when people ask if Caleb is in preschool or if he is potty trained (both things have been put on hold because of Charlotte's needs).  I find it creeps into my thoughts when I see baby books or newborn photo shoots.

I crave those black and white photographs of newborns all curled up and asleep on some ridiculous prop, unaware of the world in which they now exist.

Honestly, I really don't feel hurt or upset or angry when I see these things. How can I be frustrated by actions that I myself would have performed if not for Charlotte? I understand, on a very real and intense level, that people are {generally} not trying to be rude; that most are incredibly sensitive when they know they should be. Most just simply don't know they should be. And it's OK.

I'm not angry.

Mostly, I just feel removed.

Expelled. Severed.

Amputated from the world I once knew.

Cut off from a reality that I once loved. A reality that I still love, but cannot embrace.

I watch that reality every day. I live in it, but am not a part of it. I must interact and converse with that world. But I can't ever be a constituent of that world.

Yet in a way, I'm grateful. I've come to realize that so many people are cut off from the world with which they participate. People have lost children, or parents, or their self identity. They've lost homes or values or prized possessions. Everyone lives in their own reality within a larger reality. It reminds me that I cannot project my idea of the world in which I participate onto the people with whom I interact.

I cannot compare my inside to someone else's outside.

And yet, I do.

I feel like the amputee, dealing with the throbbing phantom pain of a removed limb.

Except that my limb was a phantom to begin with.

Sunday, January 16, 2011

Results Do Not Equal Answers

Charlotte had a slew of tests yesterday. They must have thought this was something serious, because I've never seen so much work done over a weekend. Ever.

Saturday started off with an ENT consult and a scope. Nothing like a camera being pushed down your throat to say "Good Morning", right? The ENT said that Charlotte's left vocal cord is actually moving! Not as much as the right, and not a significant amount, but the fact that there is movement at all is real progress. Doesn't tell us anything about her "event" (as we like to call it) but interesting nonetheless. The other thing the ENT saw was that Charlotte's throat still has a pretty hefty amount of inflammation and irritation from reflux. Remember that nissen fundoplication? Yeah, it was supposed to stop that whole "reflux burning up her throat" thing. So we now have a whole other question to deal with-- what to do about her reflux. I'll come back to that.

CA also saw cardiology and had an EKG. Luckily, the cardiologist believes that her event is not a cardiac problem. Yay for that!

She saw Neurology as well and they, too, believe that Charlotte's problems are stemming from reflux, not seizures. Phew.

Currently, we, as well as the team of doctors, believe that the event stemmed from some silent reflux, which resulted in a vagal spasm which slowed down the heart rate, which lead to the oxygen desaturation. Makes sense? Yeah, I didn't think so.

Anyway, we're being moved to the ICS floor, her "home" at CHOP. When she was admitted, they didn't have any rooms on that floor, but today one opened up and Charlotte is stealing it. Once on ICS, we'll discuss with her doctors where we go from here. One option is a J-tube, another is changing medications, and another yet is re-doing the nissen. 

We got a lot of results today, but not so many answers. So it looks like we'll be here for another day, at least.

Thanks for your love and support. Charlotte says "hello!"

Saturday, January 15, 2011


Charlotte was readmitted to CHOP last night, after having a rather unsettling event during her 6:00 feed.

Her heart rate plummeted to the 20's and her oxygen sat's dropped into the 40's as she was sleeping.  Her body was blue and grey and unresponsive. I had to do chest compressions and use the ambu bag to get her breathing again.  She was disoriented for about 30 minutes after the event, which is what really alarmed us.

Today they are monitoring her, and we'll see if we can get any tests run over the weekend, or if we have to wait until Monday to start exploring.  Currently they believe it was either a cardiac event, or some type of seizure activity that triggered the episode.

We're so grateful that I was in the same room with her, and that we have monitors and equipment that literally saved her life.

We're also wondering why the universe has to mock Charlotte's progress, and why she can't pull things like this while Peter is in the room.  He's the medical one for goodness sake!

But that's a post for another day.

Currently, she's her happy, smiling self and you'd never, ever suspect that she's such a little stinker.  We doubt that these tests will give us any conclusive answer, but they'll look nonetheless and all will be well.

She's actually doing much better than I am :)

Friday, January 14, 2011

Milk Scan

We got the results from the milk scan this morning and they told us, well, pretty much nothing. Her gastric emptying time is within normal limits and it showed several episodes of reflux. No big announcements there.

So we're waiting to hear back from the GI department to see if they want us to go for a scope to check out her esophagus or if we'll just wait and see how things play out once she has her sleep study.

Hurry up and wait: the story of Charlotte's life.


Thursday, January 13, 2011

GI and Pulmonary Appointments

Charlotte has had a busy week. Yesterday she meet with the GI department at CHOP and today she had a follow up with the Pulmonologist, had a milk scan, and was evaluated for a sleep study. Phew. I don't know how she keeps up with herself... did that make sense? Must be the lack of sleep.


The GI suggestions depend a lot on the results from the milk scan. Charlotte's been having some problems with her feedings, and has a difficult time keeping her oxygen saturations up while sleeping.

I'm going to ramble here with a bit of an explanation, so those who want to can skip it.

When Charlotte had her g-tube placed, she also had a nissen fundoplication done as well. The nissen procedure takes the top of the stomach and wraps it around the esophagus, creating a valve that only allows things to come from the mouth into the stomach, and not allowing things from the stomach to flow up to the mouth. Vomiting, burping, spitting up, etc are not "possible" for Charlotte. {the quotes indicate that anything is possible in real life}. Since part of Charlotte's stomach is wrapped around the esophagus, there isn't as much space in her belly for food. So she can only take about 2 ounces of formula at once. (A 10 month old typically takes about 6 ounces at a time). So Charlotte gets 2 ounces 4 times a day, and then, to make up for the missing calories and fluid, she is fed continuously at night for ten hours. Charlotte has been having an increasingly difficult time with these nighttime feedings. She's been gagging and retching so much that she often turns blue, and cannot breathe, which tends to be an important thing to do. Luckily we have nursing and they have fancy things like ambu bags to keep her breathing.

So far, we've changed her fluid volume, spread her feedings out so they take longer (she's fed via a pump that feeds at a certain rate since she can't stretch her stomach fast enough to take all the volume at once), and added special bags that should help her vent (she can't burp, so the air has to be vented from her belly). So far we've seen some improvement, but not enough to be thrilled. Actually, not even enough to be comfortable with the current status quo.

The surgery team (who placed her g-tube and performed the fundoplication) and the GI team are currently suggesting that we change Charlotte to a GJ tube. Her current feeding tube feeds right into the stomach, while the GJ tube would feed into her stomach during the day, and into her intestines during her night time feedings. We're not totally on board with this suggestion, as we feel it takes care of her symptoms and doesn't address the problem behind it. Of course, that's a problem in and of itself, since we have NO idea what that problem actually is.

So we're waiting it out. We'll get the results from the milk maybe tomorrow, but probably next week. From this scan we'll find out if her stomach is emptying too fast (called dumping syndrome) or if it is emptying too slowly (called delayed gastric emptying). Either of these problems could causing the gagging/retching episodes that we have been witnessing. We'd treat dumping with fiber (tricky, huh?) and delayed gastric emptying would be treated with a motility agent (usually an antibiotic).

If it isn't one of those, it could be that her esophagus is narrowed. At that point, we'll work on treatments for that.

Clear as mud, eh?

Pulmonary wrap up will have to come in another post. But you knew that was going to happen, right?

Thursday, January 6, 2011

Great Days

Miss Charlotte Amalie had an appointment with the Feeding Clinic at CHOP this week. At the Feeding Clinic we see a Pediatrician, a Dietitian, an Occupational Therapist, and a Speech Therapist. They all evaluate Charlotte's eating from their different views and "round" on her and then give us suggestions to help her progress with her oral feeding.

We met with them for the first time two months ago and at that point we were struggling with getting Charlotte to take bottles. Since then we've scrapped any thought of taking a bottle and have moved to a therapy protocol that involves baby food purees. Charlotte still isn't getting any nutritional value from her feeding therapy, but she's improved by leaps and bounds in the past few weeks. It's incredible to watch these professionals work with her week after week and to actually see her progress.

The Feeding Team at CHOP whole-heartedly agreed. They were so impressed with her progress and encouraged us to keep working on her purees and have us the go ahead to start with a sippy cup. This is such a huge change from last time, I can hardly describe it.

We are so pleased to have such incredible therapists working with Charlotte. We've been beyond blessed with the professionals that have treated Charlotte all along the way. From the very beginning, seriously, the very first moment of her life, we've had such incredible medical professionals who have not only treated Charlotte, they've loved her.

And that love stuff?

It heals.

It heals all of us.

Tuesday, January 4, 2011

Bad Days

I pumped for six months. Charlotte continued to have problems with her reflux so we did testing. She showed severe sensitivity to what was in my breast milk, and since it was all frozen, we had no idea what I had eaten or consumed when it was expressed. After the g-tube, we had to go straight formula to help with her digestion.

I've never thought that I would be one to be so set on breast feeding. I breast fed Caleb for a year and was happy we did it, but even more happy it was over. But the day the rental company came to pick up that yellow breast pump for Charlotte, I watched another notch in the "failure" column show up.

I'd failed to keep a child inside of me, I'd failed to keep her safe, to grow her eye lashes, to give her time to develop. I'd failed at all of that. And yet, I had come to terms with it. Charlotte was the one who came early, and I just went with her plan. I was alright. Really. Really, really.

But not being able to breast feed her seemed bigger, if that makes any sense. It was the one thing I felt that we could do "normally." Throughout her entire NICU experience, I kept looking forward to the time we could spent breast feeding. We worked on non-nutritive suck exercises, and I pumped. We did oral stimulation, and I pumped. We did pacifier dips, and I pumped. We did everything and I pumped. And pumped. And pumped some more. Every three hours for six months.

I have more pumping stories than you would believe. Like the time someone broke into my car and stole my milk and ice packs. (Jerks) Or adapter I purchased for the car so I could pump while driving. Or the alarms on my phone that went off every three hours. All. Night. Long.

She had a fantastic suck reflex. She was awesome at latching on. And she aspirated like nothing the Speech Therapist had ever seen. I watched that liquid filling her lungs on the swallow study and knew our dream, uh, I mean, my dream, was over.

Peter threw out the last of the frozen milk this week. It's been sitting in the upright freezer (which we purchased to store all the milk while she was in the NICU) for three months. It was my final goodbye to a dream that will never be. I know the day I turned it the pump was really the end, but this seemed final. Absolute.

And although I'm not really ready for it, I'm able to envision a day when I'll be OK with it. Someday.

Monday, January 3, 2011

Good Days

Charlotte had a great day in therapy today. She ATE baby food (meaning she didn't gag when a small amount of food was placed in her mouth-- we have different standards around here). We know that tomorrow will bring something different, but for today, we're smiling and enjoying the progress.

Who knew that a spoonful of peas could make a parent so happy?