Cleft Stories

Emily tried Chicken and Stars soup for the first time today. She learned quickly how to drink the soup and eject the stars (those are a few stars on her chin). Oh well. I thought for a few minutes that I’d get actual food into her.

She’s doing great 10 day post-op (my how time flies!) and there’s almost nothing new to report in terms of her recovery except that she’s taken her first unassisted steps over the last two days. This is because I let go for a second when holding her hands and she took a step! Then she fell into my arms and giggled. Now it’s a game we play, but I think it’s a step in the right direction (pun intended).

She loves bending her arms without the restraints on. Here she is flirting with me (notice I removed the stars from her chin). Except for sleep issues she is pretty much back to herself. We even took her to the park today.

Emily had her one year well-baby visit today. She did very well. Her ears were all clear for the first time in months – I nearly burst into tears when Dr. Smith, Emily’s pediatrician, told me that. She’s lost a couple of pounds and was at 21.8 lbs (she was close to 24 before the surgery). She’s also grown taller and is now 29 inches tall. She’s right in the middle in terms of percentile – 50th for height and weight.

She got two shots and did very well. She didn’t even cry for the first one and she only cried a couple of minutes for the second one. I guess she’s gotten quite a thick skin after all the medical stuff she’s been through. We gave her Benedryl only once yesterday (day 8 post-op) and that was right before bed. I didn’t give her any Tylenol at bedtime and she slept very well, almost like normal. It may be because we put the humidifier on in her room (she’s been stuffy and I don’t know if it’s left over from her cold or drainage in her nose from surgery).

Let’s not forget Ana – such a great big sister. She’s started telling everyone how cute Emily is (isn’t my sister so cute?). I dressed her up all pretty-like for school this morning and made her pose for me.

I gave Emily a bath in our room at Greenburg Hall (the dorm across the street from NYU – they have rooms that patient’s families can rent and stay in if they want to be nearby). This is the night before her surgery. She loves to play with the running water, so I let her sit in the empty tub and play with the water for a while.

Jim’s holding Emily in the waiting room right before they took us in to prepare her for surgery. It’s about 7:00 am and she hasn’t eaten yet, but she was very good.

I’m wearing a paper jumpsuit and Emily is all ready to go in for her surgery. She’s been given something to relax her, and boy she was relaxed. She went into surgery moments after this picture was taken.

This is the day after surgery and Emily is still pretty swollen. She was discharged the next morning and we’ve been trying to get her to eat ever since. She’s slowly taking in more food and fluid, but it’s a constant source of worry.

Here’s poor Ana looking very sad. She doesn’t fully understand what’s happening – just that Emily is taking a lot of mommy’s attention and that she has a “little bit of surgery” on her face. We’re going to make it up to her next week by taking her for a pony ride.

Here it is two days before surgery and I’m back in this place, this awful frame of mind that I was so glad to be rid of six months ago. I’ve tried hard not to lapse into self-pity and negativity throughout this blog. This is, after all, Emily’s problem and not mine. I wasn’t born with the cleft. I didn’t have to wear the NAM. I didn’t wake up, bleary and in pain, wondering why my mouth had suddenly changed. This is primarily a story of optimism. Emily is happy. She is healthy. She’ll be ok.

But as a parent, it’s so hard to see your child suffer and I’m afraid. I fear the look in her eyes when she wakes up in recovery, with arm restraints on and blood dripping down her cheek. I’m terrified of the crying that I won’t be able to stop. The kind that comes at 3 am, in a pediatric hospital room with an i.v. connected to her foot, a panel of blinking lights and buttons and the broken breathing of other anxious parents just trying to make it through until morning.

I hate that I can’t take her place in that bed. I hate that she’ll never understand, not ever, how hard it’s going to be for me to hold her and not be able to soothe the hurt. Will she ever trust me again? And I fear the improbable. That tiny chance that she’ll never wake up from anesthesia. That the trip to the operating room, with her in my arms, will be the last time I feel her warm and alive.

No, this isn’t a life and death procedure. But for me it’s as huge as the sky, as impossible to climb as Mount Everest, as heart breaking as losing my own soul. There’s nothing I can do but be strong for her, but I’m only human and this is my most desperate hour.

We took Emily to NYU yesterday for the pre-admissions whirlwind which included interviews with the anesthesiologist, surgeon (in Em’s case, a surgical resident), pediatric physician’s assistant (I think), lab technician who took her blood, cleft team nurse practitioner and the team ENT.

A laughing Emily the day before our trip to NYU (don’t worry, she’s still laughing even after the long day)

We got to NYU 20 minutes late to our 11:00 appointment at pre-admissions and had to wait until 1:00 to be seen (we got stuck in traffic on the FDR). Ana was with us because our babysitting plans fell through. To make long story short, my mother got into a car accident on the way to babysit (the night before – she was going to sleep over). She’s fine, but the car flipped and rolled into a ditch and it’s not fine. So Ana came along for our very long day. There’s a park right in the NYU complex so Jim took Ana there (where she proceeded to get filthy) while I waited with Emily.

After some confusion about where we should be after we missed our appointment, I wolfed down a 5 minute lunch and Emily went through most of her appointments including getting blood drawn, which turned out to be much less of a big deal than I thought it would be. They need to take less blood for the palate surgery than for the lip, so it really only took a couple of minutes and it was from her finger tip. She weighs about 24 pounds! I think it’s more like 22-23 because she was fully dressed and wearing her diaper and she’s almost 29 inches long.

I met another family in the waiting room for pre-admissions testing. They’ve seen Emily’s blog and I gave them a Soft Sipp. Their baby is having lip surgery next week and he didn’t need to use the NAM because his cleft is a unilateral incomplete. He will look great (he’s already beautiful).

Ana had meltdown about 3:30 when the ENT was checking out Emily’s ears. Emily was a trooper, she actually fell asleep on my lap while Dr. Bernstein, the team ENT, peered into her ears and confirmed the need for tubes. He also confirmed a few suspicions that I’d had about fluid in the ears such as compromising her balance (she seems a bit wobbly when walking while holding onto things), causing discomfort when laying down (she still wakes up at night) and causing loss of appetite (she’s big, but it’s mostly from all the formula not solids). It bodes further research. I can’t believe I’ve never looked into side effects of fluid. I guess I was so focused on the cleft itself that it never occurred to me.

This post is getting long…I will follow-up with an update soon.

Emily will be 11 months old next week. It seems like she’s changing every day and turning into a toddler right in front of us. She can crawl FINALLY. She started really moving last week while I was away in Florida (of course I missed it). She also cut two teeth on the bottom last week even though I told her not to cut any teeth while I was away. Her fourth ear infection seems to be resolved. At least, she finished the antibiotics and hasn’t seemed uncomfortable. She’ll go for yet another follow up next week to be sure her ears are clear. Emily has an appointment at NYU at the end of the month to get a hearing test and do the pre-operative testing for her palate surgery. I’m looking forward to seeing the team again, but I am dreading the pre-op stuff because it means they’ll need to take blood. I had to hold her down for 15 minutes while they squeezed four vials of blood from her finger for her lip surgery. It brings tears to my eyes just thinking about it. Palate surgery is April 19th at 7:30 am. We’ve all begun holding our collective breath and mentally preparing for this next step in Emily’s journey towards wholeness.

This is a classic Emily pose. She’s sitting in front of the t.v. and I had to make all sorts of strange noises to get her to look at me so I could snap her picture. She sits with her legs crossed all the time like a little adult.

Here she is cracking up because Ana’s rolling around with her in her toy area (the foot in front of Emily is Ana’s). They play together a lot. Ana told me that Emily’s going to be talking to her soon (I think she’s looking forward to having Emily as a constant playmate). Notice the very chubby knee. Emily has cleared 21 pounds and feels heavier every day!