Letter to the Support Group for Caroline's Syndrome

Saturday, April 26, 2008

Below is a letter I wrote this month for the 9p- Support Group Yearbook. It's a summary of what's been going on with Caroline since the letter we wrote last year.

Before I began this yearbook entry, I reviewed the entry we submitted last year. As I read it, the entry reminded me of the profound change our family experienced with Caroline’s birth. It was a bittersweet read – Caroline has made a lot of progress since writing but we’ve also been hit with some setbacks to her health.

GROWTH: Caroline’s growth has been stellar. She was born at 5 pounds, 13 ounces/18inches long and came home from the NICU at 7 pounds, 10 ounces and is now a roly-poly 20 pounds, 6 ounces/28inches. Those measurements place her inside the growth chart (she’s in the 10th percentile!). Her weight gain and growth really picked up when her GI added Polycose Powder to the breastmilk she was getting; that powder also helped to stabilize her blood sugar problems.

FOOD: Caroline now gets Resource (1 cal per ml) Medical Formula. When we first switched to Resource, the pharmacy that filled the Resource RX gave us the wrong boxes. So, for the first few weeks on Resource, Caroline was getting 1.5 calories per ml (instead of 1 calorie per ml)! She gained 2 of those 20 pounds I wrote about above in those four weeks after the switch – oops…not a big deal though, her GI said the only harmful effect of the fast weight gain is on our backs, not on Caro’s health. Lately, we’ve had to add a lot of Pedialyte and water to her diet, because Resource doesn’t seem to be hydrating her enough.

Caroline is not currently taking any food by mouth. It is all given via g-tube. In the last letter, I reported that she took up to 20ccs of milk by mouth. This number later increased to up to 60ccs at one feeding. However, since her trach was placed (see below), she has been chronically tachypnic (high rate of fast, shallow breathing), and she has not been able to take much food by mouth as her doctors and therapists are concerned that she may aspirate during a feeding.

Her speech therapist has been working with her in other ways to make sure she doesn’t get an oral aversion (thermal therapy, nuk brush, even the use of a Dum-Dum sucker every once in a whileJ). They won’t be trying real feedings again until her breathing slows down a bit.

DEVELOPMENT: She’s making slow but definite progress. She can sit up almost all on her own, and she has started to bear weight through her knees and elbows when on her tummy. She plays with toys: her favorites are her rings and rattles. She gets physical therapy 3 times a week and occupational therapy once a week. She also smiles a lot more now.

TRACH/ASD CLOSURE: At the end of October, the hole in her heart (ASD) was closed with a catheter procedure. However, following the surgery, she was not able to be extubated, and, unexpectedly, a week later, she had to have a tracheostomy. It was extremely difficult for us to adjust to the trach. The amount of work required for Caroline’s care doubled or tripled. Things have now normalized for us though, and her ENT said he expects her trach to come out at about 3 years old.

With the trach, we thought she might be able to come off of oxygen, but that hasn’t happened yet. Her pulmonologist still thinks she will come off of oxygen in a year or so. We’ll see…

HEART: Caroline’s cardiologist recently examined her heart and concluded that her heart tissue has grown around the device used to close her ASD. He said her heart is now perfect – “as if nothing was ever wrong with it.”

HOSPITALIZATIONS: 3 – Once, at the beginning of October, for a UTI; once, at the end of October and beginning of November, for the ASD and trach; and, once, at the beginning of December, for pallid breathing.

PALLID BREATHING: On an early December morning, we had to call 911 because Caroline had stopped breathing. After being rushed to the ER, the ER doctors diagnosed her with seizures, but her neurologists later diagnosed her with pallid breathing – a condition that some infants and young children have where they get so mad that they stop breathing. It usually occurs randomly, but, in Caroline, we figured out that these spells are triggered by Robinal, a drug given to kids with trachs. Obviously, she is not on Robinal anymore…

SIGHT: She definitely does have optic nerve hypoplasia (ONH) and was diagnosed as legally blind. Meaning for her, she can see light and big objects like the big letter on the eye chart but not much else. Her ophthalmologist said that glasses or surgery won’t help; we still need to get a second opinion about that.

HEARING: She has mild to moderate hearing loss and may need a hearing aid or cochlear implant. This will be determined after the swelling goes down from her upcoming head surgery.

UPCOMING SURGERY: Caroline will be in surgery soon to correct her craniosynostosis, meaning the bones in her skull have fused too early and need to be reshaped.The surgery is supposed to last for about 5 hours. She will be operated on by both a neurosurgeon and a craniofacial plastic surgeon. They will operate by making a zig-zag incision from ear to ear (removing all of her beautiful hair first:(), removing parts of her skull, putting the head back together in a different way using plates and screws that will dissolve months after the surgery.Caroline will then need to be in the PICU for about 4-5 days.This surgery was scheduled for the end of March but was changed at the last minute because she was a little sick. Now, Caroline has again been cleared by her cardiologist (heart doctor) and pulmonologist (lung doctor) and is a strong as she'll ever be for this.We're obviously filled with nervousness and trepidation. But, we have been thinking about this surgery for months now, received several opinions from different doctors, and ultimately feel like this is what should be done and all will be well.

GENETICIST: Caroline’s geneticist met with us last year and said Caroline has an unusual chromosomal makeup with no known cases of C’s genetic code in medical literature (Caroline has not only 9p deletion, but also 1q duplication). Because of this, she wasn’t sure Caroline would live past 1 year old, but, she said, if she did live past one year, she would have a good chance of a relatively long life span. Well, she’s now 15 months, and we’re thrilled that she has a good prognosis now.

NICKNAMES: Little, Bug, Caro, C

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