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.
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.