Charlotte's Journey Home

Just a Regular Kid, Sort Of

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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.

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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.

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Starting the Year Off Miraculously or We love Ballin Pharmacy

Just after I posted the 12/31 note, I panicked–I had ordered a refill of Charlotte’s digoxin on Wednesday and forgot to pick it up. We use a neighborhood pharmacy (“your corner pharmacy in the middle of the block”) and they are closed on Sundays. I assumed they would be closed on Monday as well in observance of New Year’s. We only had enough digoxin for one dose. Complete panic–woke Philippe up at 1:30 a.m., as if there were anything he could do about it at that moment.

On Sunday morning I went into problem-solving mode. I called the other pharmacy that has the prescription, but they didn’t have the medication in stock (it’s a special elixir or liquid form of the drug). I spoke with the cardiologist on call at Children’s. She would have been happy to call it in somewhere, but I would have to find a pharmacy that had it in stock. But, she told me it was okay for Charlotte to miss it for a day or so. Phew. We decided to wait and see if our pharmacy, Ballin, was open on Monday.

So, I took Charlotte to Starbucks (her favorite place to eat, when she’s eating) and Philippe went to do some errands. He planned to stop past Ballin to see if they were open on 1/2.

A bit later, Philippe walked into Starbucks and handed me a bag from Ballin with the prescription. Remember, now, it’s a Sunday (they’re closed on Sunday) and it’s New Year’s Day. What?!! It turns out that Bill, the pharmacist, was going into the store to do some paperwork just as Philippe was checking the hours on the door. Philippe explained the problem. Bill got the prescription and wished us a Happy New Year.

Did I burst into tears when Philippe explained this to me? You bet I did.

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You’ve Come a Long Way, Baby!

Well, Charlotte doesn’t really have a resolution. As my yoga teachers have encouraged us to do, she has decided that she has some qualities and skills she’d like to work to improve. Mainly, Charlotte would like to spend 2006 learning to walk and talk. Looks like she may be on her way to talking early–the precocious little gal is already blowing raspberries which her Speech Therapist tells me is a 9 month skill (Charlotte is almost 8 months, or 7 months adjusted for gestation). You’re all thinking it so I’ll say it–she’ll need to learn to speak early and often to get a word in edgewise in this house!

Another thing my yoga teachers encourage is to review our accomplishments at the end of the year. It’s actually a much more positive way of thinking of the end of the year and the beginning of another than determining one’s faults and thinking of a list of “fixes.”

So, Charlotte has accomplished more than a lot of seven and a half month olds (and a lot less than others, to be sure):

  • She came to be, a startling month early
  • She endured and recovered from major heart surgery
  • She flew threw angioplasty
  • She learned to eat from a bottle
  • She learned to prevent an NG tube from being inserted and she learned to pull it out
  • She (as a result of the above) had a G-tube inserted
  • She had 2 barium swallow studies (video x-ray of her swallow mechanism)
  • Countless x-rays, echocardiograms and sonograms
  • Video study of her vocal chords
  • And regular kid stuff like eating solid foods, rolling over, blowing raspberries, giggling (non-stop) and vocalizing (like crazy)
  • Reaching 26.5″ long and (nearly) 15 lbs

In addition to Team Charlotte, her friends and family, Charlotte has met and been cared for by so many wonderful people beginning with:

  • Dr. Brian Kaplan and his wonderful team, the RE who helped Charlotte become a reality
  • Dr. Rudy Sabbagha, the OB-GYN sonography specialist who found the heart problem in utero last in January
  • Dr. Bettina Cuneo, Pediatric Cardiologist who diagnosed Truncus Arteriosus
  • Drs. Luciana Young and Nina Gotteiner, her cardiologists who have followed her since I was 24 weeks pregnant, and their assistant Janet
  • Dr. Patricia Gale, my OB, who brought our little baby into the world and the wonderful nurse whose name I forget who was amazing when things went into emergency mode
  • The CMH transport team who brought my baby to me so I could at least see her before they took her to another hospital
  • The entire CV surgery team: Drs. C. Mavroudis, B. Backer and B. Stewart; APNs Julie, Elizabeth, Lori and Carrie
  • So many nurses in PICU that I can’t mention them all, but I’ll name as many as I can think of right now: Nancy Smith, Sam McCoy, Michelle Miller, Amy DeTuro, Mary Anne, Denise, Sheri the Baby Whisperer, and so many more
  • Also in PICU, sonographers, respiratory therapists, x-ray technicians, echocardiographers, nutritionists, physical therapists, and countless others at CMH who held our hands and prayed for her
  • Dr. Sisson, the orthopedist who ordered the splint for her metatarsis abductus and declared it cured in July
  • Dr. Stephen Pophal, the cardiological interventionist who did the angioplasty and Julie, the nurse who recovered her
  • Dr. Billings, ENT, who made sure we have no nucal fold problems in the vocal chord area
  • Dr. Sentongo, GI, and his nurse Annie, who are working with us to resolve any GI/reflux problems related to the G-tube
  • Dr. Chon and the great radiology team who did the GI x-ray in November. Remember? Charlotte laughed even though she was strapped to a board
  • Dr. Marletta Reynolds, the surgeon who inserted the G-tube, and Terry Coha, RN, who changes the dressing every week
  • Jackie, our friendly face nurse in surgery and cardiology clinic
  • Drs. Salem, Ramadan, Newport, Chang and McNeill, Nurse Anne and the rest of the staff of the extraordinary Lakeview Pediatric practice
  • Dr. Vicari, the plastic surgeon who prescribed her remolding helmet
  • Sara Karp, her PT, and Laura Robson, her Speech Therapist/Feeding specialist, who come to us weekly to help keep Charlotte solidly on the path to regular kid-dom
  • Louise and Bill, our wonderful neighborhood pharmacists who have met all of our special pediatric needs (Ballin Pharmacy on Lincoln)
  • The maintenance guy who cheerfully cleans up Charlotte’s “cheese” in the hospital lobby
  • The coffee shop guy at the hospital who always reminds me how hot the water is when I warm her bottle there
  • And, I can’t forget the anonymous mom of 5, 3 of whom had had surgery for a rare blood disorder, who dropped to her knees to pray for us when I was having a really hard day after an out-patient visit at the hospital

I’m sure I’ve forgotten someone. (I’ve not tried to list family and friends by name. Please don’t be offended. You know who you are and, more importantly, so do we. ) As you can see, we’ve been quite busy.

As I listen to Charlotte’s pump finishing her last feed of the year, I can hear the fireworks at Navy Pier ringing in 2006. Tomorrow I’ll have the opportunity to celebrate with many of you in person. Tonight, I want to end the year by expressing our gratitude to all of you for your love and support. This has been the most difficult year of our lives and often it has been hard to see the joy through our tears. You’ve done your best to bring perspective and remind us of hope. While I have words for so many things, I cannot express my love to all of you enough, especially to my husband who has been my rock through all of this.

My resolution for 2006? 1) To be more patient and more joyful and 2) to finally master Handstand and Crow Pose in my yoga practice.

Namaste. Shalom. Peace.