E's Third Surgery

E had surgery for a fistula repair this past Wednesday morning. For the first time it was in the outpatient center, so we were heading home in the late morning, instead of settling into a shared hospital room for the day and night. I vastly prefer going home after surgery.

E basically slept all day, took his plain Tylenol and antibiotics, and cried when I fed him. But he is a good sport and has improved every day since. With a lot of insistence from me has has managed to eat normally. And without any insistence needed, he has sleep normally, and then some.

Now I am just trying to keep probiotics in his system while he finishes those irritating antibiotics. He will be done with those Monday night, so I am looking forward to that. Then next week we go in to see Dr. Joganic on Thursday for a follow up. I am hoping for no pulled stitches and a perfectly healing mouth. That would be the best Christmas gift ever. E has already been making new sounds while babbling, and even occasionally making suction on his sippy cup. *sniff*

The next surgery will not be until his nose reconstruction when he is approximately 18 months old next July. That one will be a doozy, but at least it is not for a few months.

E's first year has quite a tally going: three surgeries, 8+ months physical therapy, 7+ months of chiropractics, and an orthotic helmet. After he turns one (in a month!!!) I am hoping for a nice boring year with just one surgery and that is all.

E's Fistula Repair Surgery

E will be having surgery to fix his palatal fistula (opening) on Wednesday December 2nd at 7:30 in the morning. It is a same day surgery, and the nurse thinks we might even get out of there in the morning. E will be wearing arm restraints again, and drinking with the special SoftFeeder nipple. Or if I can get him used to it, I may start him on sippy cups completely now so he will be ready for surgery in a few weeks.

I am trying to modify this sippy lid to see if he will take it. Since he still cannot make suction with his mouth, he needs a very fast flow sippy such as one without a valve, or one that has huge holes in the spout, or both. Wish us luck!

E's Palate Recovery

E is doing pretty well, considering it has only been one week since he had palate reconstruction surgery. He has not recovered as readily as he did with lip surgery, but he improves every day. On Thursday we go in to have the 10 day checkup.

It has been tricky keeping up with all his physical therapy and chiropractic appointments for his torticollis, but as of this morning we are back on track. He is well enough to do all the stretches and tummy time at home, and to get to all his therapies this week. We lost a little momentum (his neck looks more crooked again), but I am determined to get it back. He also gets a preliminary helmet appointment this week. In the words of Thom Yorke "It's just like, spinniiiiiing plaaaates."

E getting one more chomp in before surgery.


Standing up in his baby hospital gown that says "tiny tired tiger" all over it.


In recovery right after coming out of anesthesia. It was not nearly as shocking as how he looked last time. All the stitches are inside, he is not as swollen, and he does not sound as different.


The face he has been making the most since surgery. A cross between "I am in pain", "I am kinda bored" and "Are you seriously still making me do tummy time?!"


Um, I want that camera. Seriously, give it to me.

We are home

And E is doing well. He is sleeping a lot and eating good amounts of milk, so I am not too worried about how sad he is in between those times. But it is still sad that he is sad :( I think he will get much better over the next few days. So far he has improved greatly since immediately after surgery. Thank you for writing, texting, and thinking. Love you guys.

E's Palate Surgery

So tomorrow is the big day. Just knowing that folks are thinking of us is enough. If you like to pray or fast or devote some other kind of meditative time, that would just make my day to know that as well. I will post an update as soon as possible after surgery is over tomorrow late in the morning.

Surgery Change (again)

E's surgery is moved to July 6th. It's the day before M's birthday, but we will just have to make it work.

Palate Surgery

E is all scheduled for July 10th, just FYI. I feel much calmer about this one. Hopefully that doesn't jinx it.

E's Lip

E went in for a follow up yesterday and all is well. Swelling is down and pain is almost gone. The next step is massaging his little lip with scar gel a couple of times a day for the next few months. This helps the scar itself soften and the muscles to relax down into the proper positions. I am fascinated by this whole process. We are scheduling the palate surgery for the first part of July.

10 days!

E got his stitches out yesterday and did not even cry much. Here he is today (one day later):

Surgery Pictures

Eli a few days before surgery:

Eli in pre-op in a tiny hospital gown!
One last go at the binky. Sleeping even though he was so hungry, sweet little guy.

In his hospital room later, complete with swaddle blanket, bouncer, and Tylenol :)

At home, this morning:

At home, this afternoon:

Short Update

Eli is home now and doing well. Next Thursday he gets his stitches out. He's eating and sleeping like he usually does, and is not even in much pain. He just takes Tylenol and acts normal throughout the day. He is even talking and laughing through his swollen lips and cheeks. Anyways, we are all tired, but recovering. Thank you for all your messages, thoughts, and prayers of love. :)

Tomorrow

E is going in for surgery tomorrow. It is for the lip. Yikes! I feel somewhat prepared. I have also been freaking out all day. Just think of us around 8:30 am tomorrow and send us good vibes. We also accept fasting and prayers :) I will post before and after photos soon.

Surgery Change

E will be having surgery on April 7th instead of March 27th, due to a better time of day becoming available (8:30am instead of 11:30am). We will be arriving at 6am that morning to get the whole ordeal over with. I think E will be much happier following the cannot-eat-for-6-hours-beforehand rule with an earlier check-in.

There is also a chance that we will get a call to go in on a random day if someone cancels, since I spoke to the surgery scheduler and she says that occasionally happens. However, it will most likely be on the 7th as planned. That means that the 7th-17th will be the dreaded SoftFeeder bottle days. Wish us luck!

First Surgery

E has an official date for his first surgery, which is to repair the lip. Friday March 27th he will have surgery and we will embark on 10 days of "fun". Mostly it is due to this bottle. Oh well, it will all be over soon. April 6th cannot come soon enough.