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.

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.

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.

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.

Dinner Time, A Film Strip

With many, many thanks to Sheri for her great photography!

At the end of dinner, Charlotte had eaten 1 ounce (of 6 in the bottle) and most of her sweet potatoes and rice. She had gagged and vomited once. Screamed a bit. Pursed her lips in defiance. And giggled.
She went straight to sleep.

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!!!

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…

The Feeding Front

Charlotte continues, seemingly, to lose ground on the eating front. She took only 1-2 ounces from each of 3 6-ounce bottles today. Just a few weeks ago she was finishing at least one bottle a day and taking 4 to 5 ounces from the others. Since yesterday she’s been refusing or gagging on her solid food, too. She even pushes away old favorites like peas, carrots and bananas. I’m terribly afraid that if we don’t stem this tide quickly she’ll become 100% tube-dependent and, from everything I’ve read, it can take years to come back from that. Laura, her Feeding Therapist, is going to call the GI doc tomorrow and we’ll taking it from there.

The Bottle Battle & Life Without Daddy

I recently came upon the online diary of a mom whose daughter suffers from GERD, or severe acid reflux. She chronicles her 4 month battle with the NG-tube, culminating in complete refusal to eat and finally the placement of a G-tube. While I haven’t shared the gory details online, I thought I’d pass on the link to Nitara, My Brave Girl. If you want more of a picture of what we endured (we= all three of us), please take a look at the link to “My Journal.”

So… now you’ve all read about Nitara and know why/how we made the decision we did in November. In many ways it is the best medical decision we’ve made for Charlotte. She’s steadily gaining weight and developing normally now.

Recently, however, Charlotte has gotten very fussy about eating. Up until December 20, she was taking 80-90% of her calories by mouth and we supplemented minimally. We had to place the G-tube because she no longer tolerated the NG tube, not because she was disinterested in eating. If she didn’t finish it was usually that she tired out.

Now I find myself giving her nearly 50% of her nutrition by tube. Bottle feeding is a 45-60 minute battle, followed by a 60 minute tube feed. She thrashes, screams, tosses the bottle. She displays all signs of hunger–sucking her hand, her toys; some interest in watching her bottle being prepared. But, then when we bring the bottle to her mouth she purses her lips. If you can get the bottle in, she’ll suck with gusto for a little while, then push it out again.

To say this is exhausting and infuriating is an understatement. And it’s only been going on for 3 weeks.

Why do kids refuse the bottle?
–Heart babies can be simply too tired to bottle feed. GI doc and Feeding Therapist have ruled this out because Charlotte took to the bottle quite well at 6 weeks old and really never fell asleep while eating after about 10-11 weeks old.
Reflux. Charlotte has never really displayed textbook signs of reflux. Her periodic vomiting can usually be attributed to the NG tube; fatigue; overfeeding (i.e., parental error); congestion; and getting used to G-tube feedings. She’s been on Zantac since 6/27/2005 because she was 4 weeks early and had an NG tube, both classic conducers of reflux.
–Allergies. Charlotte is exhibiting no obvious signs of food allergies. She’s not losing weight, doesn’t have any skin issues and no bloody stool.
Unspecified eating problems. Oh goody.

Dr. Sentongo is starting by changing her medication. We’ve discontinued the Zantac and have moved on to Prevacid. She’s had that since Thursday. If it’s going to work, it should kick in in the next day or two and we should see rapid improvement. Keep your fingers crossed. So far, no real changes. Dr. Sentongo is in close contact with Laura, our Feeding Therapist. If I don’t see changes, I’m to call her and we’ll plan next steps. I need to nip this in the bud before I go nuts and, more importantly, before we lose any more ground.

Charlotte gets very excited when she hears Daddy’s voice on the speaker phone. Too cute.

The bottle battle is especially difficult without Daddy because I have to stay up to get the last pumped feed in (usually ending around midnight) and then get up with Charlotte whenever she feels like it (around 6:30 most mornings). Philippe and I usually alternate so that one of us has the opportunity to have 8 hours sleep. And he lets me sleep in on Saturdays to make up for his work travel during the week. Last night the cats staged WW 17 on and around my bed, so I didn’t sleep until after 1 am (bad kitties).

I can’t begin to thank all of our friends for their calls and offers to help me while Philippe is out of town. If I could let everyone who has offered watch her, I could go on vacation for a week!! I wish I could accept more help, but the G-tube and the pump and the feeding battle make it very difficult. What I really need is someone to be here to do the last feed so I can get a full night sleep, but I doubt I’d be relaxed enough to sleep if someone else were doing it. Go ahead, call me a control freak.

Little widget went to sleep at 6pm tonight. I had to finish her 5 pm bottle by pump. Then fed her at 8:30 pm and am now waiting until 11 or 11:30 pm to feed her again. I may have to wait a while longer as she has woken up and is taking a very long time to fall back to sleep. If I hook her up while she’s wiggling I could end up with a soaked bed when she disconnects herself. Meanwhile, she’s making very odd noises–she was congested and I took care of that, now she’ sworking hard to comfort herself, I think. She’s hiccuping, sighing, coughing, and moving around a lot in the bed. Who knows? I may give her 20 more minutes and then chalk it up to teething, and try Tylenol.

That’s life without Daddy–no parenting committee to consult.

Charlotte’s "Papi"

For the longest time, Ilene has been encouraging (better, nagging) me, Charlotte’s Dad, to make a contribution to the blog. Tonight is the night!

Why? And why start that contribution with a picture of a couple of old folk and a dog? (Note: the dog has no relationship to the old folk – he just happened to be there when the picture was taken)

Well, the old folk in question are Charlotte’s “Mami” and “Papi”, a Papi she will never get to know… This morning, around 4 am GMT, 10 PM CST, Charlotte’s Dad received the dreaded call… Papi had been taken from this earth by a sudden, massive coronary…

The irony of this is that my parents, Charlotte’s Belgian grand-parents are the most heart-healthy people I have ever known: long daily bike rides, low fat diet, and the works. As ironies go… Charlotte was planning a visit in May to celebrate Papi’s 80th birthday, Mami & Papi’s 50th wedding anniversary, together with her first birthday (both are stuborn Tauruses… go figure :-))…

Finally, another thought crossed my mind: Charlotte will not get to know either of her grandfathers (“Papa” Goldman passed away immediately after Ilene & Phil got married). The curse of having kids later in life… But we will, per Terry’s good vibes coming my direction just a couple of hours earlier, collect and tell their stories, so Charlotte will grow up aspiring to their greatness, while understaning their weaknesses.

I will be heading out to Belgium later today to join my Mam and my Sister to grieve the loss of my Dad in Leuven, our hometown. Neither Charlotte, nor Ilene, Charlottes Mam, will be able to join me, as to this date Charlotte’s medical complexity make it impractical for “my girls” to join me on this trip and provide me with the moral support and the perspective I so dearly need in these trying times.

Aah… “The Circle of Life”… well, from where I am sitting right now… It sucks!!

PS: With many thanks to Continential Airlines for allowing me to get to Brussels ASAP & to Jean-Pierre and Beatrice Leonet, dear friends of my parents, who took this wonderful picture of Mami and Papi during their last trip together… to Venice.