First Week Home

Notes from Amateur Hour
I’m pretty sure that Charlotte is screaming “Who let the amateurs take over?!” But, I’m constantly reassured by my friend Colleen’s comment that it is amazing that children survive their parents. Given that she has 3 beautiful, happy daughters, I’m going to take her word on this one.

So, are you wondering what’s going on at our house? Let me tell you about the first 24 hours. Simply put, we (I) screwed up nearly everything we possibly could have. Whatever we didn’t mess up in the first 24 hours, we managed to get to in the next 24 hours. Like what, you ask? Here’s the skinny:

Tuesday: We arrived home a bit later than anticipated and just barely had time to get Charlotte and the delivered feeding equipment through the door before the home health care nurse arrived. Miriam, the nurse, came to show us how to se the feeding pump; make sure we understood the maintenance of the NG tube; and do a baseline vitals check of Charlotte. We were thoroughly disorganized when she arrived. Just a big, plain mess.

Because of the mess, we basically did this entire nursing visit on the floor in our living room. When Miriam left, our problems began:

Amateur Act #1: I tried to stand up with the baby, got the NG tube wrapped around me and, yes, pulled it out of her nose. Here I was so worried that she would pull it out and instead I did it. Daddy to the rescue—Philippe put it back in in record time. We did do a botched job on the tape, however, so it’s just a matter of time…

--Somehow, it was suddenly nighttime. I offered to do the midnight and 3 a.m. feedings.

Amateur Act #2: Apparently, I wasn’t paying close enough attention to Miriam when she told us how to program the pump. I did it backwards. So, instead of being set to deliver 45 ml in 30 min, I had it set for 30 ml in 90 minutes. Poor baby was sooo hungry. Poor Mommy couldn’t figure out what was going on. Poor Daddy had to get up to help.

Amateur Act #3: The midnight feeding ended around 2:30 am (should’ve been over around 1 am), and it was time to start again. Because of my hiccup with the pump, I couldn’t re-program it (this is because the pump doesn’t have an “erase” or “clear all” button and it was looking for more food to deliver from the previous feeding. Daddy to the rescue. Again.

Wednesday: The day went so smoothly that we should have anticipated something going (okay us doing something) wrong in the evening.

Amateur Act #4: I had midnight feeding duty. Charlotte started sucking the bottle so hard and dribbling all over. I couldn’t figure it out. Called for Philippe (who was asleep). He took one look and said, “Make her take more frequent breaks so she slows down.” I did. She had sucked down the first 15 ml in about 5 minutes. Too fast!!
(Don’t forget—unlike most babies we all know, Charlotte has to learn to coordinate the suck-swallow-breath actions and is at a disadvantage because she was 6 weeks old before she started. She can aspirate into her lungs (food going down the wrong way) more easily than most babies due to her surgery and delay. Fast eating is not cute for her.)
Why did this happen? Well, it didn’t occur to me until I started cleaning up that I had forgotten to mix the rice cereal into her formula. We thicken the formula to make it easier for her to control her suck and swallow, in an attempt to avoid aspiration and help her build endurance. (Yes, we do talk about feeding as if it were an athletic event. For Charlotte, it is.)

Amateur Act #5: So, you’re all saying, “Yup, Mom’s an amateur.” Well, Dad had his turn at 3 a.m.. Passing in the hallway, I neglected to tell him about my gaffe with the rice cereal. Guess what Daddy did (or didn’t do)? Being smarter than me, however, he realized it halfway through the bottle, however, and simply put the rest of the bottle in the NG tube.

We won’t be making that mistake again. There’s a big note on the counter now. (Okay, we did almost do it Thursday evening, but caught it in the nick of time.)

Thursday:
Amateur Act #5: Mom lost track of time and forgot 5 pm meds. When I remembered, I only gave her one medication. I didn’t remember the other until 7 pm. Fortunately, I remembered the critical medication.

Friday:
I shouldn’t jinx us, but so far today, we’ve done things the way we should have!

The Charlotte Update

Baby Charlotte is eating like a champion, taking all (or nearly all) of her bottle at every feed for the past day or so. This could lead to all bottle feeding by our surgical follow up appointment (Tuesday). She has gained weight (3.7K). We think she’s really hungry, so we got the okay from the dietician to increase her formula. She no longer fits in her cute tie-dye onesie L. Hip-hip hooray!!

We’ve got the house super-organized around her needs. Enough so that we were able to handle having dinner company (our pal Lisa in from Denver. Looking a fabulous 13 weeks pregnant herself) with a little help from Costco.

The kitties continue to be interested from a distance. Miles has been caught red-pawed jumping onto the changing table and rubbing up against the diaper box. Esther sniffs and seeks much more attention from Philippe. But she cuddles up with me to sleep (when I can manage to find a bed).

And, best of all, we went for a walk yesterday. Yep, we have officially joined the Roscoe Village stroller brigade. Pictures will follow in a day or so when we can get the roll finished. We made 3 stops and Charlotte was a little celebrity at all. Three guesses where the first stop was? Yes, my friends, Charlotte has been to Starbucks! Seriously, where else did you think we’d go? And, where else would a new urban mom meet moms?

Then we visited our optician, who will be a new mom herself soon.

Finally, we stopped by our friendly neighborhood pharmacist who has been helping us with all of Charlotte’s medication requirements. They were so thrilled to meet her. There really is nothing like using a neighborhood pharmacist rather than your grocery store. As the Goldmans know from years of patronizing Mr. Goldstein’s Northfield Pharmacy, a family pharmacist becomes family. And, it is a more European model, so Philippe is much more comfortable, as am I.


The Funniest Advice or A Day in Our Life (for now)

Please forgive us if we laugh when these two pieces of advice are given:
--Just sleep when she sleeps. Really, it will help.
--Get her on a schedule. (By the way, all you moms out there, why is that you, who know best that baby defines his/her own schedule at first, say this the most often??? J)

About that schedule thing: Charlotte is on a schedule. A very strict schedule defined by her doctors. She eats every 3 hours, whether she demands it or not. Rather than Charlotte waking us up because she’s hungry, we have to wake her up to feed her. Why? Well, remember, she was fed by NG tube exclusively for the first 6 weeks of her life, so she has to learn to feel hungry. We’re confident, based on her screamin’ Mimi attack last night, that she is learning…

About sleeping: We’d love to. We’ve given this advice to new parents ourselves.

However…each feed requires about a 10-25 minute set up. We have to measure out a portion for the bottle and a portion for the NG tube. Then we mix her bottle formula with rice cereal (see above). Then, we have to wake her up which can take 10 minutes or more itself. Charlotte takes 15-30 minutes to eat 1 oz. of formula. Then the rest runs through the NG tube for either 30-45 minutes, depending on whether it includes unfinished bottle formula.

You adding this up? So far, we’re talking about approximately 1.25 hours to feed her. And another 15 minutes or so to clean it all up. Meantime, Charlotte is sleeping through the NG tube feeding (most of the time). And we’re about 45 minutes away from having to start all over. Seriously.

At 9 am and 9 pm, we also have to deliver about 6 medications. Measuring them out takes about 10 minutes. Whoever measures has the other person cross-check dosage (just like in the hospital).

Other meds are delivered at 1 am, 1 pm and 5 pm (off the feed schedule).

Don’t get me wrong—we love your advice and we look forward to being able to apply it. Soon. I really hope soon.


Some Giggles from the Insurance Front

As we’ve told all of you, Charlotte has experimented (unwittingly) with most of the things we hope she stays away from as a teenager:
Ø She’s been on morphine
Ø She’s been treated for morphine addiction with a methadone treatment
Ø She’s used K-Y jelly (to hold bows in her hair)

And, she’s on Viagra. Yes, you read that correctly. Viagra. Apparently, the original use for Viagra was to treat pulmonary hypertension.

So…on Monday, our Surgical Nurses started working with our Case Manager to arrange for discharge. This included checking insurance, pre-certifying all of her home healthcare (100% covered, thank G-d), and clearing the drugs.

Elizabeth told us on Tuesday that her conversation with Blue Cross Blue Shield (BCBS) went something like this:

BCBS: We can’t authorize Viagra. It’s a gender specific drug and the patient is a female.

(Us: Duh. And she’s a 7 week old at that. No, she is not being treated for erectile dysfunction).

Elizabeth: Yes, I understand that Viagra’s more common use is ED, but it is also used to treat pulmonary hypertension in pediatric patients…..It’s medically necessary, etc.

BCBS: (after some conversation). Okay, we can cover it, but Viagra is limited to 4 pills a month

(Us: So, the average male with ED is permitted by the insurance company to have sex with his partner 4 times a month. We wonder if that represents some serious research into the average urges of the average male suffering from ED or is it an attempt to prevent the “recreational” use of the drug ?)

I don’t know if this is as funny to you reading it as it was to us, Elizabeth, Maureen our caseworker and the nurses. But we just about fell off our chairs. (And since Philippe is not piping in here, I have to add that even though little darling is not taking Viagra for recreational purposes, I do remind her daily to “seek immediate medical attention if she has an erection that lasts more the 4 hours.” Mostly this is for my own entertainment, but I do get giggles from Philippe and the nurses.)



Like any new parents who’ve just gotten baby home from the hospital, we are beyond tired, happy, scared, and have a tendency to end phone calls by saying “Oh geez, gotta go, damn…” Does anyone know where they keep the instruction manuals for these things??