Cleft Stories

Well, as I’d suspected, Emily had an ear infection. I took her to the doctor on the 13th and she had an acute infection in her right ear. As far as I can tell, “acute” means really bad. Dr. Smith, her pediatrician, said the ear was very red and filled with thick fluid, etc. etc. So she’s back on Omnicef, a potent antibiotic. I didn’t know it at the time, but the ear infection was a precursor to the WORLD’S WORST COLD.

Yesterday was her birthday and I didn’t post because Emily needed a lot of attention. The cold hit her hard on Wednesday night. She was up half the night with Jim and at 3 am, I took her. I gave her Benadryl and she finally fell asleep at 4:30 and slept through until 8:30. She was very congested all day long with a mild fever of about 100. If you’re wondering what this means for her surgery on Tuesday, well, it could mean postponement. However, since it’s not a high fever and she’s not coughing (which means it hasn’t moved into her lungs), she may be fine for surgery. NYU told me to bring her in and she’ll be evaluated the day of surgery. Keep your fingers crossed. Postponement will be hard on all of us. We just want to get this over with and get on with the next year which will be blissfully surgery free.

Here’s a picture of her from this morning, playing with Ana’s keyboard. She slept much better last night. We put her down around 7:30 pm and she woke up only once at 9:30 pm and then went back to sleep right away until 6:00 am. She looks awful this morning, but her fever was down to 99.7 and she played on her own for a while (she wouldn’t let us put her down yesterday). She’s back upstairs napping (hopefully). I put her down earlier than usual because she looks so sick (red, watery eyes, puffy nose). I hope to see her improve as Tuesday gets closer and closer.

It looks like Emily has another ear infection. Here’s a classic sign – rubbing at the ear with that “It hurts, ma” look on her face.

Emily’s birthday is in two days and her surgery is in six days, so we’d hoped she’d stay healthy long enough to enjoy the former and get through the latter. Apparently her ears didn’t get the memo. She seems to have a cold – the first sign of that was lots of crying at bed time. I think the reason she cries when we put her down to sleep is that the pressure in her ears really hurts when she lays flat. Normally this pressure is tolerable, but when she has a cold she gets a lot of fluid and it becomes painful. An infection can cause pain too, I’m sure. I’m taking her to the doctor today (sigh). They know me by my first name there, and it’s a busy pediatric practice.

I hope that the infection won’t compromise her surgery. She really needs those tubes. I know she’ll be a lot happier without the constant stuffy ears. Hopefully it will give her the confidence to take a few unassisted steps.

I call this Emily’s “burglar” walk. She cases the inside of the house by holding onto the wall and moving around all over the place. I believe she’s quite capable of walking unassisted, but she lacks the confidence (fluid in her ears can throw off her balance, which is precarious anyway since she’s just learning to walk). She gets around pretty good like this, but I know she’ll be a much happier baby when she’s finally walking on her own.

The countdown to surgery has begun, so I’ll be posting much more frequently. Please say a prayer or send out a positive thought or two for Emily to help her (and us) get through the next week. Surgery is Tuesday April 19th at 7:30 am.

Emily’s been on the latest course of antibiotics for 8 days and she seems to be doing better. She saw an audiologist on Monday and she can hear well, although she does have some loss of hearing which is due to “stuffy ears” (fluid in her ears). He said her ears weren’t infected, which was a huge relief. She has enough hearing loss (I think it’s in the 25-35 decibal range) to prevent her from speaking, which is kind of ideal because we don’t really want to encourage her speech until after palate surgery. She vocalizes very well which is an indication that she can hear. He felt that once her tubes were in the issues with hearing will go away altogether. Good news!

We are taking Emily to NYU next week for her pre-admissions testing. We’ll also meet with the nurse practioner on the team to get information about the surgery and arm restraints (ug). Still, I’m looking forward to seeing the team again.

And speaking of hanging out with the team, I will be attending the American Cleft Palate-Craniofacial Association (ACPA) 2005 Annual Meeting in Myrtle Beach, NC with the NYU team the first week of April. I was asked by the team to attend with them to speak about the NAM from a parent’s perspective. The entire team will be presenting and I’ll only have a few minutes to talk, but it is a huge honor. They will show this blog at the seminar!! I’m so excited.

Emily was seen by her pediatrician yesterday as a follow up to her last ear infection. She was on antibiotics for 10 days and we waited a full 10 days for the follow up visit to be sure the infection was gone. Well, it wasn’t. Both ears are filled with thick fluid and the eardrums are bulging. I feel so bad for Emily. This is one of the common issues with babies who have a cleft palate – chronic ear infections. We knew about it when I was still pregnant and I worried then, but Em was free and clear for the first four months and I’d hoped to dodge that bullet with her. Ah well.

Here she is in pre-crawling mode. She’s thinking about it…will she do it??

Houston, we have lift off!!!

So back to the ear stuff. She’s on antibiotics AGAIN for the next 10 days. The team ENT at NYU will look in her ears on the 30th – the same day she’s got all the pre-op stuff. I just made an appointment for a hearing test which unfortunately won’t get done until April 14th because I waited so long to schedule it (I originally thought they’d be doing it at NYU and then waited to long to set it up once I learned they weren’t). Bad me!!! ug. The ENT at NYU will want to look at the results of the hearing test before he can recommend tubes, but at least he’ll get a look in Emily’s ears on the 30th and he’ll have the results before her palate surgery, so I hope there won’t be a delay with that. I really hope the tubes will solve this chronic fluid and infection problem and my baby will start to hear normally. More later…

Emily had her nine month well-baby checkup yesterday. She’s doing great except she’s got ear infection #3. I’d taken her in a few days ago to get her ears checked because she started waking up a lot at night and her nose was running. At that time the doctor (not her regular physician) said her ear was inflamed but not infected so he wanted me to wait before putting her on an antibiotic. Her cold got worse after that and I guess that’s why the ear got infected. She seems happy though and not in any pain and she started the antibiotic yesterday. Now for the good stuff.

Emily weighs 20 lbs 3 oz. and is in the 75th percentile for weight and head circumference and 50th for height. She’s on target with everything cognitively (bangs toys together, makes eye contact, turns her head when you call her name, says “mama”). She’s a bit behind with mobility, but I think she just wants to walk and is not interested in crawling. She loves to stand on her own too.

Here she is standing on her own with the help of one of her toys. Don’t be fooled, she’s not really ready to do this without supervision. She fell backward about 30 seconds after I snapped this shot and hit her head on the rug.