ENT followup

Simon went to the Pediatric Ear, Nose and Throat doctor today to check on his ears post surgery. The ear tubes are in place and working well. He also passed his second hearing screening, so he's A-OK.

95% of babies with cleft palate need ear tubes to prevent chronic ear infection and/or temporary hearing loss due to an inability to properly drain fluid from the inner ear, so we decided to place tubes during his lip repair surgery.

Happy Friday!

The well meaning bureaucracy

Okay, so this post is mainly an excuse to put up a bunch of new pics from the past week. Simon is looking and feeling great 3 weeks after his surgery. We have a few followup appointments in the next week, but everything seems to be going well. Lack of continuous sleep is an issue, more for us than for him. We're working on it.

I've been meaning for a while to mention the strange phenomenon of having been labeled a "special needs" family. At the suggestion of our cleft team, we applied for Illinois' Early Intervention program and also the Department of Specialized Care for Children when Simon was born. We're still sorting out what each agency does and whether we need to be involved with them or not. We didn't know it at the time, but the hospital where Simon was born also apparently reported his palate to the City of Chicago, and now the Department of Public Health wants to send a home care nurse to check up on us every few months. Not surprisingly, each agency has an agonizingly slow process, so basically it feels like they are all documenting our successful negotiation of obstacles 3 months after the fact, more so than actually helping us find our way. Sigh. They mean well.

I guess it feels so surreal because Simon is just Simon to us, and we are lucky to have great care and support. He is a tough little guy.

The Chicago Department of Public Health nurse wrapped up her visit by giving me a tote bag with the agency name on it, and inside was a little paper bag filled with multi-color condoms. Excuse me?

Closeup with no tape

This morning the tape covering his lip finally fell off, and at the same time he sneezed out his nasal stents, so I got a few pics. The scar is kind of red right now, but it will fade over the next few months. The timing is different for everyone, it could take a couple of years to fully fade. I think it looks pretty great already, especially when he is sharing his sweet little smile with us.

Laughing again

Simon is getting back to his old self again. Here is he is laughing it up with Papa, just like old times. I can't get him to laugh like this, Michael has the special touch. Now, if we can only get back to sleeping through the night, we'll be golden. Since the surgery, he has been waking up hungry every 2-3 hours all day and night. I'm thinking maybe he's having his 3-month growth spurt, in addition to making up for the food he didn't eat while he was at the hospital.

Stitches are out

I took Simon back to the hospital this morning for his scheduled suture removal. We had to go through the whole Operating Room procedure again, fasting for 4 hours and arriving 2 hours before the procedure, but once we finally got there, it was easy. He was under general anesthesia again, so that's why all the precautions, but it was just through a mask for a few minutes, he was back with me and awake within 15 minutes.

We were looking forward to seeing his new lip without stitches, but we will have to wait a little longer, because they put suture tape over the scar to protect it. We have to leave it in place until it falls off on its own. Plus he's still wearing nasal stents for now, secured with more suture tape. Sigh. Can't wait to see his little face without all this medical stuff in the way.

He's feeling great and eating everything in sight. He even managed to gain half a pound this past week, in spite of all the difficult, slow feedings. He's a little chunker, and a charmer, smiling at all the nurses and doctors, even though he was so hungry.

Care and Feeding

First of all, thanks to everyone for the well wishes. We are at day 3 post-op, and it's a job of work keeping this little guy fed and clean and medicated. In some ways it's like going back to the newborn days, sleeping 2-3 hours at a time, and eating veeeeerryyyy sloooooowwwly, while spitting up a lot. He HATES his antibiotic liquid and the ear drops, but the worst is the nasal stents, which go very far up his nose, and he's got stitches inside his right nostril so that's no fun. It means he continues to have a tape moustache for a couple more months.

Every day is a little better than the day before, wheezing and screaming less and laughing a little more. We go back to the operating room on Wednesday to remove the sutures from the outside of his lip, but since he'll only be under anesthesia for a few minutes, hopefully the recovery will be a lot easier.

Simon 2.0

We were pleasantly surprised that we were discharged from the hospital today around 1 p.m. It was a tough night for me and Michael, with all the wires and monitors, and Simon pretty out of it from the morphine. We didn't get much sleep. In the morning, we let it wear off so he could eat, and that helped him turn the corner. He is eating about half his normal amount, but that is good enough for now. He is on Tylenol with codeine, and we hope to be using only infant Tylenol later today.

Here are some before and after pictures from our day and a half at the hospital.

Surgery Day

Simon is out of surgery, and he did great! No problems, his nose and lip were repaired, his soft palate and uvula were also repaired, and ear tubes were placed. His hard palate will be repaired later, probably next spring or summer. He will be evaluated every few months to see if the lip/soft palate repair is bringing his hard palate closer together.

He looks great, a little swollen in the upper lip, and he has stitches and nasal stents to maintain the new shape of the nostrils. He is wearing little velcro arm casts to prevent him from putting his hands in his mouth, and he has 2 IVs, for saline and morphine. He is still sleeping under the morphine, the nurses will try him on Tylenol with codeine later on and dial back the morphine.

If he eats well from the bottle we'll go home tomorrow. We're spending the night in the pediatric Intensive Care Unit tonight. Thanks to everyone for the well wishes and support this week, and especially to the grandparents (all 4!) for coming to wait with us today. Also, of course a big thank you to Dr. Polley and his team here at RUSH and Dr. Walner, for their great work helping Simon.

We will post pictures later on. We've been up since 2 a.m., so we're going to follow Simon's lead and take a little nap.