SLIDER

Craniosynostosis Recovery - Day 2

Wednesday, April 30, 2008

Caro continues to progress smoothly.  She is completely off of the ventilator, although still on a higher amount of oxygen than normal.  That's to be expected because of the swelling in her head and airway.  Speaking of swelling, that's what Caroline's head has mainly been up to.  

Her doctors informed us from the beginning - that her head and eyes would swell a great deal post-surgery - like...A LOT.  Think Stewie from Family Guy (not that we watch that show... very much)...  

Anyway, her day mainly consisted of a lot of napping and waking up cranky as the morphine wore off.  We aren't able to pick her up yet because of the swelling and drainage, so it has been one of the harder things about this hospital stay to not be able to hold her when she's sad.  

She maintained a slight fever for most of the day, which is to be expected.  Tonight, though, the fever spiked to 103, so they sent blood cultures to the labs to make sure nothing else is going on.  

We still expect to have her home in a few days.









Again, the hospital shots below may disturb younger readers.  Remember, she is VERY swollen!







A Success!

Tuesday, April 29, 2008

After 5 1/2 hours in surgery, Caroline emerged safely from her cranial reconstruction!


In the waiting room, at 7:30am (after getting up at 5am to be there for her 6am call time!).  Here, she hasn't eaten since midnight and is still a pleasant bug, albeit a wiggly one (the wiggles were her saying "Feed Me!").

Dad and his girl having fun before surgery. 

"Don't worry, Dad.  I'm a strong one."

A moment with my girl

"Thank you for the smiles, Mom, but when is breakfast?"

We then sent her into surgery.  She did well throughout the surgery (she did have to have a 200cc blood transfusion because of blood loss, but we were prepared for that).  I can't tell you the feeling of relief that swept over us when the surgeon came out to tell us that the surgery went well.  A wonderful blessing!

The following pictures are of Caroline post-op.  They are slightly graphic and may be concerning to some of our younger blog readers.






As you can see, her head is much rounder (she's our little cue ball) and her eyes are further apart - there's no more bump on her forehead. (We'll do before and after pics when she has healed).

The wrap around her head is hiding the bandages over the incision that was done from ear to ear.  The little bag to the side of her head is from a shunt in her head; the shunt will help drain off excess liquid that will form in the head as it heals (I know it looks like it's all blood, but the docs assured us that there is only some blood - mostly it's other liquids).  The shunt will be removed before she goes home (which should be in 3-4 days).

Our lounging girl, as roly-poly as ever.

A peaceful C, doing her best to heal quickly (with a little help from Mr. Morphine:).  

As of this evening, the ventilator is not breathing for her, but she is still hooked up to it, as it's adding some pressure to the breaths she's taking on her own (just to make sure she's breathing well while sedated).  She should be fully off of it by tomorrow morning.

Thank you all for your prayers, thoughts, and support.  They truly helped the doctors do a great job.  Our little Caro is a fighter; we're very grateful she can stay here with our family despite all the things her body has to go through to be with us.

(PS - Also, to those of you who posted comments on the blog over the last couple days, a special thanks - I love hearing from you!)

Caroline's First Haircut

Monday, April 28, 2008


A stillshot of the iChat we did while cutting C's hair
Well, the surgery's still on, so tonight we cut Caroline's hair for the first time to save some of it before the surgeon cuts the rest off tomorrow. See my brother's blog for a video of the cut (he started filming after we'd made the first few cuts but you'll still get the idea) - http://www.sanofsky.blogspot.com/.
We have other pictures to share of tonight but it's getting late and we have to be at the hospital at 6:00am tomorrow! So...I'll post pictures and updates soon.
We're getting really anxious:( - thanks in advance for your prayers and support tomorrow.

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

Surgery postponed

Tuesday, April 15, 2008

We just received a call from Caro's neurosurgeon's office that the surgery will be postponed to April 29th because the surgeon has a family medical emergency.

Since we announced the surgery, we have received an outpouring of support from family and friends. Thank you all for your thoughts and prayers. We will keep you posted on Caro's progress up to and during the surgery/recovery now scheduled for April 29th.

Craniosynostosis Surgery

Sunday, April 13, 2008

This Wednesday, Caroline will be in surgery to correct her craniosynostosis, meaning the bones in her skull have fused too early and need to be reshaped (for more information, click here).

We ask for the fasting and prayers of our family and friends today and throughout the week.

The surgery on Wednesday will begin at 7:30am and 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.

We'll give you updates throughout her hospital stay; we'll also try to post a pre-op photoshoot before Wednesday.

Thanks in advance for your concern and love.

Good Heart News

Tuesday, April 8, 2008



Caro had an appt with her cardiologist today to evaluate how her heart has taken to the device that closed up her ASD (the hole in her heart)(see this post for some history behind her ASD Closure)

The doctor said that her heart has completely closed around the device -there is no leak through it. Usually, it takes 6 months + for the heart to take to the device (it has been 5 months), so he was very pleased.

He also said that the heart murmur she has had since birth can no longer be detected. He said that her heart is now performing as if nothing had ever been wrong with it! Caro finally has the perfect heart she deserves.

He said that he wants her next check-up to be in ... 1 year! That's how unconcerned he is about her heart.

PS - He also cleared her (from a heart standpoint) for her cranial surgery coming up on the 16th (I'll post more about that later).

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