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.

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!!

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.

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.

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!

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.

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.

2 Good Days

Saturday and Sunday—two good days and two good nights.
Charlotte is getting “bolus” feeds, meaning that she’s getting a set amount over 30 minutes every 3 hours to mimic a regular feeding schedule. They’ve dialed back the Vapotherm a tad as well as the NO. Taking it slow. Thinking of the tortoise—slow and steady wins the race.
Am off to see her now.

Later That Day

Phew. Today was a good day. We visited Charlotte for a little while this morning, as I think I wrote earlier. She was calm, peaceful and had been so since just around when I talked to her nurse at 1 a.m. We left her in the calm, capable hands of nurse Eileen. Then we skedaddled because we all decided that too much stimulation would jinx it. We returned around 4 pm to find that the little darlin’ had been asleep almost al day. Her blood gasses were quite good, slowly decreasing all day. The last one I saw, around 7 p.m., was under 50 which is within normal range. And, her respiration rate hovered in the 25-40 range all day, also normal.

We heard that she fussed a little around 1:30 p.m., but who wouldn’t fuss when there’s been no food in +12 hours? When her feeds started again, and she’d had another good cuddle and swaddle (courtesy of Nurse Sheri, the self-proclaimed “baby whisperer”) she settled right down.

Thanks to all of you for your emails and calls in the past few days. It means so much to us and Charlotte is lucky to be so loved by all of you.

Fingers and toes crossed that tonight is a good one and that maybe, just maybe, we’ve crossed a bridge of some sort here.

Early a.m update

1 a.m. (Yes, I called the PICU to check on Charlotte. I was awake…..): Little Charlotte was a handful after Philippe left. Fussy, inconsolable, crying for hours. The nurse told me that they had to “help” her by holding her and that intubation was imminent. You probably don’t want to get me started on the nurse and our conversation. Suffice it to say, she emphasized that if she could get the fellow alone in a room and discuss Charlotte, the baby would be tubed by morning. Did I sleep after that? You decide.

7 a.m. We got to the hospital and Charlotte was resting comfortably, swaddled in a pink blanket and looking a bit like an ice cream cone. Turns out she’s been peacefully asleep since just after my conversation with the nurse.

8 a.m. Morning Rounds: As Robin, the MD fellow, brought everyone up to speed, we learned that it had been Robin who decided Charlotte needed to be cuddled and cuddling calmed her down. The nurses thought that the baby was having brief (6-8 seconds) periods of not breathing, but Robin said that she did not experience that. This confirmed a nurse/physician disagreement from yesterday as well. Bottom line—her blood gasses are slowly improving, her respiration rate is slowly coming down to a normal range and she’s comfortable. For now. Her surgeon, Dr. Mavroudis, changed nothing except for lowering the dosage of Milrinone, the only IV drug she’s on. We’re hoping they’ll start her food again today (it was suspended in anticipation of reinserting the ventilator. So the kid is hungry. Don’t know about you, but I’m a bit of a crab when I’m hungry, too). We’ll be in the PICU at least through the weekend. If things stay stable like this, we can hope to see her grow and have a positive outlook for next week. However, as we all know, a few hours can change everything.

Hour by Hour

It seems like things change by the hour, or at least with every blood gas test which occurs about every 6-8 hours. Up, then down, then up, then down.

6/2 Morning Rounds, 7 a.m.: After they put Charlotte on the Vapotherm and the ammonium chloride, things seemed to improve a bit. Her CO2 level improved and her respiration rate seemed to be coming down. The doctors changed her prescription cocktail again—increasing her Milronone to reduce pulmonary artery pressure and adding an additional, potassium-saving diuretic for the wet lungs. Everyone was still concerned that Charlotte hadn’t gained weight. Concerned enough that she now has a weight chart taped to the crib.

6/2 Afternoon Rounds, around 4:30 p.m.: By afternoon rounds, however, the respiration rate was high again and the CO2 creeping up. Believe it or not, the doctors added Viagra (!) to the cocktail. It is apparently an oral version of the nitrous oxide that she received through the ventilator. So, now, Baby Charlotte has used K-Y jelly (to attach a bow to her head), has had a morphine habit and a meth cure, and is on Viagra. Talk about living the high life early!!

6/3 Morning Rounds, 7 a.m.: In morning rounds today, the doctors seemed pleased with Charlotte’s progress. Her respiration rate was down in the 40-60 range and her CO2 level was improving. She gained weight, too! From 2.39 G to 2.6 G. 200 grams is, of course, a huge weight gain and probably a scale issue—20-40 grams would be normal weight gain.

As the nurse practitioner put it to me at 8 am this morning: Yesterday at 4 pm, Charlotte was tracking toward needing to go back on the ventilator and this morning she was tracking more toward not needing to go back on the vent.

Well, like Chicago weather, wait a while and things change.

6/3 1 p.m.: Lori, the nurse practitioner, called me at home. Seeing “Children’s Memorial” on the caller ID made my heart stop. The scoop—with the noon blood gas test, Charlotte’s CO2 level was up again. While her respiration rate is not creeping too high yet, her breaths are shallow. So….they are putting her back on the nitrous oxide, administering it through the Vapotherm cannula. This is, as far as I can tell, a last ditch effort to avoid re-intubation.

(Writing at 1 p.m.) To be frank, I’m not too optimistic that this will work. I’m pretty sure we’re looking at the ventilator tube. I’ll probably know in the next hour or so, as they were going to another blood gas to check results quickly. If she has to be re-intubated, little Charlotte will be in ICU for at least another week or two. The idea is to let her rest and grow—right now she’s using all of her energy to breath and that is why she’s not growing.

6/3 2 p.m. (just as I finished the first portion of this update): Lori called again. Blood gas tests taken after the addition of the nitrous oxide showed a “tweak” of an improvement in the CO2 level. Based on that, the doctors planned to let Charlotte continue on this path and even out by herself.

Afternoon rounds, 5 p.m. The nitrous oxide has been raised to the highest possible level. Charlotte appears to be breathing comfortably and her CO2 level is down to 56. Normal level would be between 40 and 50, so this is a turn in the right direction.

Philippe and I went for dinner at 7 p.m. Afterwards, Philippe went back up to say good night to Charlotte. At 9 p.m. Philippe walked into the house and said, “Don’t be surprised if she’s intubated by morning.” Her breathing is labored again, etc. And, while the cardiovascular team was pushing to let her recover on her own, the PICU team is inclined to intervene a bit earlier. Overnight, the PICU team is in charge and (in my opinion) the nurses have a lot of influence over what the fellows and attending physicians ultimately do (as we saw with the methadone treatment last weekend).

By the way, they stopped her ammonium chloride today and it seems that the docs are leaning toward respiratory cause for all of this, as opposed to the metabolic cause discussed yesterday. Lori told me that high pulmonary artery pressure is quite normal in newborns—since the placenta does the work of lungs in utero, the lungs need to stabilize and learn how to maintain pressure. Normally, this stabilization occurs within 6 weeks of birth. With Charlotte, the congenital heart anomaly meant that pre-surgery the lungs were not able to even out the pressure and there was too much blood flow. Some of what we’re battling is, then, an artifact of Charlotte’s lungs not being able to start stabilizing until after the surgery and having to start at a more compromised place than the average baby.

CO2 Elevation

The chest tubes came out yesterday. It’s so nice to be able to just scoop Charlotte out of her crib, even if she’s still attached to what I call “spaghetti”—monitors for respiration rate, pulse, blood oxygenation, heart rate; arterial line through which blood is drawn (so they don’t have to prick her every time); main line (through which medications are delivered); and an NG tube for feeding.

Since the ventilator was removed, Charlotte has been on oxygen, delivered through a nasal tube called a cannula (like what you see on TV all time). For first day, all of her tests came back normal. Then, she was placed on the methadone treatment—not only was she stoned out of her mind (the medical term, I swear J), but her breathing got more rapid. I noticed all day on the 29th , that her respiration rate was consistently higher than we thought it should be. She didn’t seem uncomfortable and the nurses at first thought this was the normal high/low breathing pattern of a newborn.

That evening we got a phone call at 11:30 pm from her nurse. My heart stopped. Literally. It turned out that a test that evening showed elevated CO2 levels. Translation: her breathing was more labored and her blood gasses are not properly balanced. Because she did not seem to be “retracting” (using non-breathing muscles to breath), the first step was to put her on a Vapotherm cannula. This delivers humidified oxygen with a higher pressure than the regular cannula, opening her airways for more efficient oxygen delivery. Michelle, the nurse on duty, wanted to let us know so that we wouldn’t be surprised at a new machine in the room.

So far (since that midnight call), Charlotte’s CO2 levels have come down, but not quite enough. It seemed that she’s plateaued. This morning, the doctors told Philippe that they will go slow to treat. They’re giving her time to figure it out, recover, and her blood gasses right on her own. Chalking it up to slow recovery because she’s so tiny, I think. We were worried, though, because they implied that the next step would be to re-intubate her (put the ventilator back in).

Philippe and I have been frustrated that they were treating the symptom, not finding a cause. Well….Philippe just called and it seems we have a cause for the CO2 elevation and, now, a treatment that is working. The theory is that Charlotte is experiencing metabolic alkalosis, an inability to regulate her pH level, brought on in her case by the 2 weeks of diuretics (Lasix) she’s been getting. Since the attending and the nurse came up with this, Charlotte has gotten two doses of ammonium chloride and her CO2 level has come down steadily. Since it’s the night crew that is determining this, we’ll have to see if the primary doctors want to continue this course of action in the morning. But for now, Philippe says she looks more comfortable and relaxed than she has in a few days.

A factoid:
In the US: Metabolic alkalosis is the most common acid-base disturbance observed in hospitalized patients, accounting for approximately 50% of all acid-base disorders.