Charlotte's Journey Home

Just a Regular Kid, Sort Of


2 Comments

Musings: A year post-diagnosis

I started this blog noting that it would be a diary of Charlotte’s journey to the life of a regular kid.

When you think about it, though Charlotte was conceived via some high tech assistance, we started our pregnancy believing that it would be our journey toward “regular” parenting, parenting of the sort we saw our friends enjoying (and being frustrated by!).

On January 28, 2005, we were told that our parenting journey would be quite different than what many of our friends and families were experiencing. We thought, however, that we’d get her through surgery, have a difficult few months and then everything would be okay. After all, my best friend from high school has a daughter who had Tetrology of Fallot (our first diagnosis) corrected in infancy. She celebrated her bat mitzvah last week. My cousin Lynn, celebrating 40-something this year, had Tetrology repaired when she was a baby.

January 31, 2005–we learned that we were dealing with Truncus Arteriosus, a repairable, but far more serious and devastating defect. A defect that would require at least 4 surgeries and had far more complications associated with it.

If I were to put into words how the diagnosis and subsequent medical treatment (mine and Charlotte’s) have changed us, I couldn’t do it any better than Emily Pearly Kingsley did. Here is her essay:

Welcome to Holland
By Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this:

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans… the Coliseum, Michelangelo’s David, the gondolas of Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!”, you say. “what do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life, I’ve dreamed of going to Italy!”

The stewardess replies, “There’s been a change in the flight plan. We’ve landed in Holland and it is here you must stay.”

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It is just a different place. So, you must go and buy new guidebooks. You must learn a whole new language. You will meet a whole new group of people you would never had met. It is just a different place. It is slower-paced than Italy, less flashy than Italy, but after you have been there while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandt. But everyone you know is busy coming and going from Italy and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That is what I had planned.”

The pain of that will never, ever, ever go away because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Ms. Kingsley’s essay speaks of children with on-going special medical needs and is posted on a support website for a specific chromosomal order which Charlotte does not have. We are in Holland right now, especially with the eating concerns. Perhaps it’s more accurate to say that we are speaking Dutch in Italy–it is truly embarrassing to try to feed Charlotte in public, it takes too long, and is too painful. Many days I’m locked in the house in order to get her fed (breakfast took nearly 2 hours this morning– 1 hour to feed orally, another 45 minutes to pump what she wouldn’t eat).

We’re hoping that our trip to Holland will be a detour and that our experience will have enriched us. Perhaps it will enrich those of you who take the time to look at our travelogue.

It is important to note (for us, anyway) that Charlotte has special medical needs, she’s medically complex. But, as far as being a “child with special needs” (such as special school, wheelchair, etc.) she’s not that kind of special needs kid.

We still hope to get to Italy and join you all one day. We know that once we’re there we’ll return periodically to Holland, but Italy is the dream!

p.s. Many thanks to Kath and her friend Gina–they sent me Maureen Higgins’ essay To You, My Sisters which led me to this one.

Advertisements


3 Comments

How’s Charlotte?

Just ducky, thanks.

Seriously, little pranks like making the top of Charlotte’s head into a duck’s nest are the only way I can make this helmet torture + eating nightmare bearable. I know some of you think this thing is cute and I greatly appreciate that you are not trying to tell me that. Even Pat, Charlotte’s orthotist agrees–the helmets are not cute. Simply put, Charlotte is adorable in spite of the helmet. The helmet certainly does not enhance our gorgeous baby’s looks. Her huge peepers and long eyelashes, however, do enhance the evil beret.

Anyway…Charlotte had her first helmet re-fitting today. Her head grew 2mm and the shape is shifting nicely. Pat said that if she continues at this rate she might get out of the helmet sooner than Mommy thinks.

Also, Charlotte was evaluated by Cheryl, an Occupational Therapist yesterday. She was found to be right at 8-8.5 months milestones! Occupational therapists look at motor skills as they relate to visual discrimination and at shoulder girdle strength. Charlotte is alert and aware of her environments, grabs at toys with her fingers, bangs toys around, watches toys, follows a person speaking, etc. Cheryl determined that no OT will be necessary for Charlotte at this point. At last, a little bit of good news.


2 Comments

MIC Key button

Today Charlotte had her tummy catheter replaced with a MIC-Key or what I like to call the “flip-top.” We put the extension tube in when we need to feed her and we leave it in overnight. It’s very odd to undress her and see this flip top there. Somehow it is stranger than the catheter tube sticking out of her belly. Maybe because it is more permanent?

I had my first really negative experience at the hospital yesterday. I was actually quite mean and rude to an x-ray technician–the first time I’ve been mean to any of Charlotte’s caregivers in 8 months. Basically, after Terry changed the button, we needed an x-ray to assure that the tube was well-placed. Until the g-tube placement was confirmed, I could not feed Charlotte. We had to wait 3 hours for the x-ray. 3 hours. Between the x-ray and the procedure Charlotte had no nap and waited +7 hours between feeds. I was livid. I’ll let you all use your imagination about how I reacted.

Feeding Front
Charlotte continues to fight her bottle. She’s eating a bit more for me, but still utterly refusing Philippe. One of her new favorite tricks is to grab the bottle, swing it around, put it in her mouth, not suck and then laugh at us.We had a long conversation with her pediatrician and several discussions with her Feeding Therapist and the GI doc’s nurse. Based on all of their input we’re working on getting an appointment at the Feeding Team Clinic at Milwaukee Children’s Hospital. While Children’s Memorial Hospital in Chicago is a wonderful hospital, Charlotte’s feeding issues may be better served by the integrated team approach at Milwaukee. She’ll be evaluated at the same time by a team of folks. Hopefully we’ll get to the bottom of this strange behavior of the past six weeks and get some idea about how to resolve it.

Remember…don’t try to tell me that this darn thing is cute.


1 Comment

Debut of the Beret

Daddy’s home! Okay. He’s been home for a week. We’ve been a bit tired and overwhelmed with the eating problems, so no blogging for a while. Charlotte was so happy to see Daddy and he was delighted to see her.

Thursday was the big day. We went to the orthotics department at Children’s at 7 a.m. to pick up Charlotte’s helmet. Our friends the Ardells like to call it the “beret”. Here’s the first picture I could get up the courage to take.

For the next several days, Charlotte will wear the helmet for a few hours at a time, working up to 23 hours a day. She cries when we put it on and take it off. It breaks our hearts, but we’ve been told she’ll get used to it quickly.

At the orthotics office we met the mother of a 17 month old, a “helmet graduate.” She volunteered immediately that people will make comments and we should be prepared for that. Our friend Jenny has given us several suggested retorts:
–Charlotte is the new goalie for the Chicago Black Hawks
–Charlotte rides a trike and love her helmet.
–She’s a new team member for the Chicago woman’s roller derby
I’m thinking of telling people that she’s decided to be an astronaut or a super hero.

Feel free to post a comment with your thoughts on a retort. I promise to use retorts only when people make rude or inappropriate comments. Nice comments and polite questions will receive all the information they want.


Leave a comment

Another Day, Another Doctor and Your Questions Answered


Before you call Family Services, the first thing I did this morning was change the sheet!!

Another Day, Another Doctor’s Office
Our insurance company gave the final approval for Charlotte’s helmet last week. Something that is 100% covered and does not need pre-authorization took almost 4 weeks to be “pre-determined,” whatever that means. Since it took so long, the plastic surgeon and orthotist wanted to re-measure Charlotte’s noggin. So, we trekked out to Glenbrook to have Charlotte measured by the STARscanner.

I don’t remember if I explained this earlier or not–the STARscanner takes a digital scan of her scull; the whole “procedure” takes all of 45 seconds. The old-fashioned measurement required a CT-scan, which for a little squirmy one would mean sedation. Unfortunately, the STARscan is so new that it’s not covered by insurance. I plan to submit it anyway–I figure that if they have approved the helmet made from the measurements of the procedure, they ought to approve the procedure.

Anyway, here’s Charlotte in the little stocking cap she had to wear for the scan. And, a picture of the scan. (Definitely right click on the scan to see it larger. It’s pretty wow.)

Measurements showed a slight improvement. I could have waited another month to remeasure and decide, but I’d rather get it over with as Philippe and I believe it is inevitable. Also, the later you put it on, the lesser the results.

We’ll get the helmet on 1/19. We’ll ease our way into wearing it 23 hours a day. She’ll have weekly fittings for a month and then spaced out after that.
Hopefully, it will be off by her birthday and we can put this horrible moment behind us.

By the way, the most difficult thing I’ve had to do as a parent? Choose the pattern and color for her helmet–they come in very fashionable designs these days!

Your Questions and Comments Answered

CAVEAT: Every comment that you have made has been made by others and every question has been asked more than once. That’s why I’m responding. NONE OF MY ANSWERS ARE DIRECTED AT ANY INDIVIDUAL READER. THAT MEANS: THAT DOESN’T MEAN YOU. Get it? Good.

And, there are no stupid questions or comments. Really.

In no particular order:
–Charlotte is hungry. When she refuses the bottle she is putting any and everything else, including her entire hand in her mouth. She doesn’t want the bottle
–We’re definitely working on transitioning a sippy cup, but when she won’t let me put anything in her mouth, she won’t even take that
–Nobody knows why she’s suddenly refusing the bottle. It’s a mystery to her medical team
–The helmet will be on for about 4 months or until she outgrows it
–Refusing the bottle probably has nothing to do with whether she likes the taste of the formula. When she eats, she eats it just fine
–Of course I’m going to get past my self-consciousness and do what’s right for my child. We decided that immediately when her head was measured in December. I really was just using the blog to vent. Thanks for your tough love.
–On the other hand, every mother with a helmet-ed kid that I’ve talked to (at least 4) have said that yes people do make comments, they do stare (especially in church, go figure) and they do ask insensitive questions. When I say “people” I’m not talking about you, Team Charlotte, but about passersby (or is that passerbys?)
–Refusing the bottle doesn’t seem to be teething-related; it’s been going on for too long. A day or two or three would be teething. +3 weeks is something else
–Yes, Charlotte is the cutest, easiest baby I’ve ever seen (no insult to all of your kids, really. I’ve never lived with them and I’m sure they’re adorable, too)
–She’s rolling over, sitting when propped, blowing raspberries, reaching for toys, and laughing. She’s also begun shaking her head “no” (especially when there is a bottle nearby!)
–She sleeps on her tummy since last week (she gets there herself)
–Yesterday was a completely average day, nothing extraordinary


Today, on the other hand, was extraordinary. Many thanks to Amy and Beth K. for watching baby this afternoon and evening. And thanks to Samantha for having a 10 pm pizza with me and keeping me company during the last feed!

And, may I be the first to wish Charlotte’s Fairy Godmother a Happy Birthday!!!


2 Comments

A Day in the Life of this 8 Month Old


Charlotte is 8 months old today. In celebration, I thought I’d treat you to a day in our lives. I’m going to start at 11 p.m. last night since yesterday never really ended:

11:00 p.m. Hook up Charlotte’s last feed of the day. Set the rate a little faster than one hour in the hopes of hitting the sack before midnight. However…Charlotte woke up when I entered her room and ootzed for a full 30 minutes. Then she cried. I went in to find baby’s head covered in vomit.
Stopped the pump. Cleaned up baby, changed the bed, calmed baby down, put baby back in bed at around midnight. Feed left unfinished. Charlotte ends the day 1.5 ounces under goal. She takes another 45 minutes to fall asleep (12:45 a.m. or so)

6:45 a.m. My alarm goes off. Charlotte is still quiet. I check and she’s still asleep so I hop in the shower. First opportunity to wash hair since before Philippe left for Belgium. Get her medications and her bath ready.

7:25 a.m. Charlotte wakes up. Serve baby’s medications and, since I have to wait 30 minutes after Prevacid to feed her, give her a bath. She likes that.

8:00 a.m. Begin Breakfast Battle. Charlotte refuses the bottle. She really digs her bananas and rice, though, so we nearly finish those. Battle the bottle some more. Try putting Charlotte in her swing and feeding bottle. Manage to get 60 mls (2 ounces) or about 1/3 of her bottle into her.

9:00 a.m. (yes, breakfast took an hour). Put Charlotte down for a nap and hook her feeding pump up. Stay in her room, on the floor to make sure she doesn’t come unplugged. Fall asleep on the floor (sleeping through several phone calls and neglecting other important tasks.)

10:00 a.m. Charlotte’s feed finishes. Get breakfast. Make another batch of baby food. Talk to my friend Julie whose daughter Audrey (8.5 months) also refuses to eat, for different reasons, and who is doing the same battle, though still with the NG tube.

11:00 a.m. Charlotte wakes up. Get her lunch ready.


11:30 a.m. Begin lunch debacle. Charlotte refuses bottle. She lets me feed her peas and rice cereal. She gags on the peas. Finally she vomits back the peas, complete with bile (as there’s no formula in her belly) and a big bit of mucus.
Start over, putting her in the swing. Manage to get 80 ml. in her. While this is a triumph of sorts, the most she’s taken in days, it is a far cry from the nearly complete bottles she was eating in early December. Try not to cry. I swear when I tell Charlotte she’s so pretty she says “pretty” back to me.

12:15 p.m. Hook Charlotte up to machine to complete feed. This time she’s on her play mat so she can wiggle, but we can’y do any of her exercises because that’s a sure vomit-inducer

1:00 p.m. Feed finishes. Cross my fingers that she won’t vomit since I did it in under an hour (we used to do all pump feeds in 20-30 minutes, no matter what the volume. Losing ground there too.)

1:20 pm. Get Charlotte ready to go see Terry, the surgical nurse.

2:00 p.m. Arrive at Children’s Memorial, achieve rockstar parking. Run into Dr. Stewart, one of Charlotte’s surgeons. He’s amazed at how big she is. He reminded me that she was 3.1k when she left the hospital. She’s now over 6.6k, or more than twice her release weight. For the doctors, it’s all about growth. They could care less how she gets her nutrition.
Terry changes Charlotte’s Hollister dressing and we reschedule her button placement for the 2nd time.

2:30 p.m. Put Charlotte in car and pray she’ll stay awake ’til we get home because a) I need to feed her and b) she needs to nap. I’d like to do it in that order.

3:00 p.m. Having lost the awake battle, I wake Charlotte up inadvertently when moving her out of the car seat. Offer her bottle in hope that the drowsy baby will eat. No luck. But I do manage to really wake her up and piss her off, so now I have to wait until she dozes off again before I can plug feed in.

3:20 p.m. Plug feed in. Contemplate whether I can nap or have to do laundry. Choose laundry so I can change Charlotte’s sheets (She urped during morning nap. Yep, I’m letting her nap on a dirty sheet. Not feeling really good about that.)

3:40 Talk to Philippe in Belgium until feed finishes. Race upstairs to shut off pump and flush line without waking baby.


4:00- 5:00 p.m. Do some filing. Make phone calls (i.e. leave messages)about insurance issues with Charlotte’s Early Intervention case manager, the nice lady at Empire BCBS who actually helps us get things done, and OptionCare (special feeding supply company) case manager.

5:00 p.m Contemplate closing my eyes until Charlotte wakes from her excellent afternoon nap.

5:45 p.m. Open my eyes. Charlotte is still asleep?! Deal with laundry. Serve Charlotte her p.m. meds. Load dishwasher. Contemplate what’s for my dinner (leftovers not looking appealing tonight; ordered in last night; want pizza or something gooey).

6:15 p.m. Charlotte still asleep, but may be waking up. That would be about a 3 hour afternoon nap. That would be perfect if it had started at 2 p.m. Bedtime is usually 6:30, so we’ll be all messed up tonight. But, on the upside, if I can get a bottle into her now, I can do the last feed at 9:30, 10ish. Nice.

7:00 p.m. I have lost the dinner battle. In fact, I’ve been beaten, in every sense of the word. For the second time today, Charlotte has taken only 10ml (of 180ml). Sobbing, I set up the pump. Note: Charlotte should be going to bed right now. However, if I put her to bed, I can’t safely start the pump until she falls asleep. So, I’m keeping her up to pump her, at least for part of it. She doesn’t mind now, but I’m sure that the lost sleep doesn’t help the feeding situation. As soon as the dryer stops I’ll change her into pajamas so she’s ready for bed.


8:00 p.m. Charlotte has been put to bed. The sheet has not been changed because I’m simply drained. I feel like a lousy parent for putting my child to bed, twice today, on a dirty sheet, but I just can’t do any more.
I’ve decided that she’ll forgo her last feeding tonight so I can go to sleep at a regular hour.
I’ve also decided to skip dinner. Just can’t muster the energy to deal with it.

8:15 p.m. Charlotte fell right to sleep. I’m nuking a potato, spinach and slicing leftover steak. If Philippe reads the blog and knows I skipped dinner, he’ll be upset. So I’m eating.

9:15 p.m. Proofread blog. Upload pictures. Contemplate dessert vs. going to bed right now. Philippe has trained me, so dessert will win. Watching junky t.v. even though I rented 2 movies I really want to see. I know I won’t be able to concentrate on them.

To be continued…