Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Home At Last!!




She’s home! Upstairs asleep. Please give us a day or so before you start calling (if you’re so inclined). We’ve got to get the hang of her feeding schedule, medications, etc. It may be a day or three before we start venturing out of the house. We’ve nearly run our one portable oxygen tank dry, so baby is tethered to her bedroom until some more are delivered tomorrow. Then we probably want to get the home logistics mastered before we try to juggle going out.

The cats have sniffed everything, from the bouncy seat to the oxygen tanks. Miles has sniffed Charlotte, too. They seem uninterested in her, but want to be in whatever room we’re in. When I’m with Charlotte, Esther is head-butting Philippe; then she comes to me for Beanie—Esther time. Hopefully that will continue to go well. My biggest concern is that one of them will want to bat at the tubes hanging from the bassinet (the oxygen and, every 3 hours, the feeding tube).

We’re relieved, exhausted, and thankful to be here. As for me, I’m a bit nervous and scared. Looking forward to the oxygen and NG tube going away.


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Coming Home Tomorrow


Okay, here’s the big news. The news everyone, no one more than us, has been waiting for. Charlotte is coming home tomorrow! Yes, after 7 weeks, our little pumpkin is coming home. With oxygen and an NG tube, but home.

She’s out of PICU and Philippe is staying with her at the hospital tonight. Tomorrow is a big day—one more in-patient echocardiogram, x-rays, and check out. Then we have to get home to meet the couriers with NG supplies and oxygen supplies; get her prescriptions delivered; and have a visit from the home health care nurse to learn how to use all of our paraphernalia.

As for yesterday’s update–well, most of you guessed that Charlotte had fewer tubes on her face. Correct! And a few of you noted specifically that she had only her NG feeding tube, no oxygen. Also, correct. The PICU team decided to take her off oxygen this past weekend. She did really well, but she was breathing awfully fast, sleeping a lot as a result, and not waking up to take her bottle. So…baby is back on oxygen (.25 liter, for those of you keeping track).

I’m sure you can all imagine the range of emotions we’re feeling—relief, glee, triumph, fear. Like any new parents, we’re wondering how anyone decided that we’re allowed to take care of a baby (okay, I’m wondering. I shouldn’t talk for Philippe). I’m reminded of Kath saying that you need a license to drive a car, but any idiot can have a child. Hmm….. Anyway, if you don’t hear from us for a few days, it’s probably because it will take us a few days to figure everything out and get into a groove. We’ve got a pretty strict schedule of medications and feeding (at least as long as she has an NG tube) to get used to. And, we’ve got to get the house organized to actually have her here (should we have thought of that earlierJ?). And, we’ve got to figure out getting around with her and her oxygen, feeding pump, etc. so that I won’t be stuck in the house.

If you’re wondering, Philippe is off until July 18. Thank G-d!!


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3.1K & Finally a Baby


Well, Charlotte’s little attitude attack on Tuesday did lead to another milestone–we’ve hit the all time high weight of 3.1k (that’s +6lbs for you non-metric types). As Philippe has started saying—she’s a baby now, not a “patient.”

Many of you have heard through the grapevine our best news of the week—Dr. Backer told us on Wednesday if she had a good day, he would release her to the cardiology recovery floor, and then maybe home by the weekend. She’s almost home!!!!!!!!! Due to a lack of beds on the 5th floor, however, she’s still in PICU and we think there’s a chance she’ll be released from there. Also, her breathing was very fast most of yesterday and she’s sounding congested, so what we thought was weekend/early next week, may be later in the week. We’ll know more later today. The bottom line—the end of our hospital adventure (this time) is finally in sight. So hard to believe.

Charlotte will be coming home with oxygen and an NG feeding tube. We don’t know how long she’ll require either. I think it has to do with her breathing rate and how well/comfortably she eats from a bottle. I have heebee-jeebees about inserting and maintaining the tube, especially since our little charmer likes to pull it out when she’s angry. So, for selfish reasons, I hope we’re able to start bottle feeding her in the hospital this weekend and begin working toward bottle/breastfeeding.

While the past 7 weeks have been exhausting and trying, the real parenting doesn’t really begin until she gets home. I’m sure that’s when it will really get fun, hard, scary, wonderful, etc. We’ve missed out on a lot of the wonder and fatigue most of our friends experienced in the first 7 weeks of parenthood and we’re both looking forward to making up for lost time with our little gal.


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Off of Vapotherm

Well, we hit a pretty big milestone today—Charlotte has graduated off of her Vapotherm to a regular oxygen cannula. She’s one step closer to leaving the ICU and heading up to the cardiology floor. We think they’ll keep her in ICU for a few days to observe her and make sure that everything is good. So far her respiration rate is within acceptable limits.

Of course, Charlotte didn’t like having the tape pulled off of her to swap out the cannulas. Or, maybe she was hungry. Whatever it was, she pitched a fit for several hours today, screaming at the top of her little lungs. Philippe points out that she’s graduated off of the Vapotherm; I say she’s graduated from a “tiny-tude” to a “mini-tude.” And the fact that she kept it up nearly non-stop (I kid you not, it was audible throughout half of the PICU), demonstrates to me that she has some serious stamina. Those little lungs must be recovering!

Charlotte’s “screamin’ Mimi” imitation may lead us to another milestone. She’s lost a little weight in the past few days, which concerns us. The screaming may have been pure hunger. So…the Nutrition department raised her feeds to 59ml every 3 hours. The Speech department is going to evaluate her today or tomorrow for suck and swallow. They may then allow bottle feeding on demand (with the same 58ml limit).

We’re closer and closer to having our little honey home with us. It will be so great to get into a routine that doesn’t involve driving to the hospital and having the security guards recognize us and the nurses greet us like old friends.


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Miss PICU 2005

In case you weren’t tracking the calendar quite the way we are….Charlotte’s surgery was one month ago yesterday. This week has finally been one of stability and growth. On Wednesday, Dr. Stewart weaned some of her Flolan (the IV drug for pulmonary hypertension). Her respiratory rate went up a bit so he held off weaning anything yesterday. Today they stopped the Flolan completely. This time her breathing rate stayed within normal limits, but the nurse thought that she was working too hard to breath, using non-breathing muscles. None-the-less, the doctors seemed really happy in afternoon rounds today.

We’ve still got to get her off of the Vapotherm. She’s on 6 liters/hour. Since the weaning rate for that has been 1 liter/day, we’re guessing she’ll be in the PICU for at least another week. It’s just a guess. The doctors don’t really tell us anything past what they might do tomorrow.

Charlotte is growing, finally. She’s up to a whopping 2.83K (not quite 6 lbs. for the non-metrics among you.

Mostly, she’s doing normal baby things…turning bright red and screaming to get a diaper changed, snuggling when we pick her up, loving her pacifier, enjoying some tummy time on the boppy (thank you, Mary), and charming all of her caregivers. Dr. Stewart told us today that Charlotte is in the top 40% for cuteness. It works like this—“the middle 40% are cute because most babies are cute. The top 40% exceed that level of cuteness. And, to be polite, we don’t talk about the other 20%.” Well, our CV team sees a lot of babies (they do at least one heart surgery a day), so we think they probably know about cuteness. Of course, we think she’s the cutest of all, a shoe in for “Miss PICU 2005.”

I’m forwarding an email I sent to a few of ya’ll this week with a link to photos. You’ll need to log in to Ofoto to see the pics. If you don’t have an Ofoto account, follow the Register link to create a free membership. The photos are a sample of the +12 rolls we’ve taken to document Charlotte’s journey so far. We’ll update the electronic brag book regularly in the coming weeks, so feel free to check back for more pictures!


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6/15


Charlotte continues to do well. Ever so slowly, the doctors are weaning her off of her nitric oxide and Flolan, bringing them down on alternate days. And, she’s finally growing a bit. Philippe has become expert diaper daddy and bath-giver.


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Respiratory Rate Climbs

The past few days have been a bit odd—Charlotte was doing so great that the doctors started weaning her off of different therapies. When they weaned the Vapotherm from 8L to 6L/hour, Charlotte’s respiratory rate started climbing. Over the past 2-3 days the doctors have been tweaking the therapies and drugs to try to get her to a normal-range respiratory rate. So…they’ve raised the Vapotherm to 8L and added a new drug, Flolan, via IV to treat the pulmonary hypertension. This all brought the rate down a bit and it stayed steady. Today they took her off her Milrinone, the last IV drug from post-surgery. She seems to be tolerating that change well, though her breathing rate has not significantly decreased.

The nurses and the doctors are concerned about the breathing rate and the fact that she is not really gaining weight. But they keep reassuring us that it is normal for a newborn to breath rapidly and that Charlotte is demonstrating no distress. The respiration rate is important, but apparently the fact that all her other vital signs are normal is also good.

Where are we? Well, we’re at a plateau. We and the doctors are impatient to see more significant strides. Charlotte is taking her own sweet time to get better. It is beyond frustrating and a bit scary. The doctors are basically working with the drugs and therapies to determine what order things can be weaned. It’s a bit of “try and see” approach, albeit with a lot of experience and knowledge. And it is imperative that our little honey gain weight.

All this to say that if you don’t hear from us in the next few days, that probably means that nothing has changed appreciably. No news is, then, no news.