Two Weeks Post-Op Follow Up

Well, I wish I could report that the "sleep strike" is over, but despite this picture, it really isn't.  It certainly hasn't gone back to the way it was pre-op.  But, we carry on.  Silas had his two-week post-op follow up appointment today.  As of last Wednesday, it appeared that Silas had lost one of his tissue grafts and that one of his two fistulae had opened up.  The surgeon was unable to confirm that is the case, however, because of the various levels of sutures that he used to close the palate.  It may appear to be open from the mouth side, but the nasal side could still be closed.  Even if there is a small opening, it could close up on its own.  We just have to wait and see what happens at this point.  In no event would Silas have another surgery this year, so that's good.  I don't think we could handle another one any time soon.

To add insult to injury, Silas started daycare this week.  I go back to work full time tomorrow, so we put Silas in daycare for two hours on Monday, and four hours today.  I wouldn't say it went great, but it could have been worse.  Basically, Silas cried and slept.  I guess he's catching up on his lack of sleep while he's there.  It will be interesting to see if he opens up tomorrow, when he'll be there for a much longer day.  The good thing about this daycare is that there are video monitors so we can see how things are going from the office.  We can also call the classroom at any time and make sure he's doing okay.

We've gone on a couple of outings recently, so here are some photos:

Here's Silas looking at some turtles when we visited a small animal park.  He loves turtles!

And our second outing to the beach was much more successful than the first.  Silas loved playing in the water with his dad.  He's still not sold on the whole sand thing (understandable), which is why he looks a little uncomfortable in this photo, but he is definitely a water baby!  Can't wait to get him into swimming lessons so I won't have to be so worried when he gets adventurous near the water.

Surgery Follow-Up

Today, Silas had his 1 week follow-up appointment with the oral surgeon.  They said his palate looks great and is healing well.  We go back next Tuesday for another look.

We don't have a follow up with the ENT for another couple of weeks, but we can already see a huge improvement in Silas' hearing.  He now reacts to almost every sound, which he didn't do before.  He also is listening to us more, and attaching meaning to our words.  Today, at lunch, he was hunched over in his high chair. I said, "Sit up, Silas," and propped him up.  He looked at me, and slumped over again just so I would say "Sit up," again.  When I did, he immediately complied.  He even did it again a few more times just to test it out.  It's pretty cool to see him learning like that.

We're making some progress on the sleep strike, as well.  Silas will now let us lay him down in the crib without immediately jumping back up to his feet.  That allows us to try and soothe him to sleep since he's having trouble doing that himself with the no-no's on.  Yesterday, including naps, he got a total of 9.5 hours of sleep--a big improvement over the prior 5 days of 6 hours each.   We're cautiously optimistic that things are turning around.

Sleep Strike Day 5

I had really hoped to be able to report some progress in negotiations of the Sleep Strike.  Unfortunately, Silas is proving to be extremely tenacious in his quest to avoid anything resembling sleep.  It's frustrating for Brian and me because we know he needs sleep, and he's just not getting it.  The more sleep-deprived he is, the more prone he is to meltdowns over the littlest things.  Silas' doctor has recommended letting him cry it out because it seems that we're locked in a battle of wills.  Silas is no longer in pain from the surgery, and he doesn't seem to be experiencing any post-surgical trauma because as soon as he gets his way, he's happy and quiet (if not a bit cranky from being so overtired).

Brian and I differ on this one, but I will say, I'm not a fan of the cry it out method--especially for an orphan with whom we are trying to form a healthy attachment.  I hate the idea that he is crying out for us, and we aren't responding.  Also, I'm not certain that we'll be seeing any results from it.  I suspect the sleep strike will end when Silas wants it to end, and not a moment sooner.  In the meantime, we just have to keep reinforcing the routine, so that he knows what the rules are.  As for us, well, we're pretty sleep deprived these days, and looking forward to the end of this "phase."   :-)

Day 3 of the Sleep Strike

Silas is recovering very well from his surgery.  He's taking only Motrin for pain, which appears to be minimal, and finishing up his antibiotics tomorrow.  From what we can see of the palate, it really looks great!  Silas has plenty of energy, and doesn't seem to be slowed down by the no-no's on his arms.  HOWEVER, since we've been home from the hospital, Silas refuses to sleep in his crib, or anywhere else for that matter.  He will only sleep with Mom and Dad in our bed.  If we put him in his crib, he will stand up, throw everything out, and scream until we go in and get him.  We've contemplated letting him scream it out, but the kid has some stamina.  He's gone as long as 90 minutes before we finally caved (and worried that the screaming might do some structural damage to his palate).

We strongly suspect that the culprit is the no-no's.  Until now, since he's been in his own room, Silas has been great about going to bed.  He only fusses for a few minutes, if at all, when we put him down, and he goes right to sleep.  He sucks his thumb, rubs his blankie on his face, and he's out!  Of course, the no-no's have made this self-soothing behavior impossible.  So, if we put Silas in his crib, he can't calm himself down to go to sleep.  He needs Mom or Dad to comfort him to sleep.  It's been a pretty exhausting three days, to say the least.   We're hoping the "sleep strike" ends soon, for everyone's sake.  :-)

Surgery Day

Silas had his surgery today.  All things considered, it went very well, and he did great!  We arrived at the hospital at 5:30 a.m., went to registration for some paperwork, then were led up to the surgery waiting room.  Since we were the first case of the morning, it went very quickly.  We were led to a room for Silas to get into a gown.  They took his vital signs, and we met all of the doctors and nurses on the surgical team.  When it was time to start, they gave Silas a little medicine to make him woozy, and wheeled him off ot the O.R.  We felt very comfortable with these doctors, but it was not easy to see them wheel our baby away while he was still awake.  I really wanted to be with him when the put him under, but they don't allow that at our hospital.

Anyway, all went well.  The ENT came out about 10 minutes after they wheeled Silas away.  His part was already done.  The ear tubes were in place, and Silas was doing great.  One thing the ENT did say was that they found food in Silas' ears--behind the eardrum!  As gross as that sounds, it made us feel so much better about undertaking the fistula repair at this time.  The poor kid was having food go into his nasal cavity and from there into his ear canal every time he ate--creating a breeding ground for bacteria.   No wonder he's had three ear infections since we've been home!

The oral surgeon's part of the surgery took a lot longer.  We got three calls from the OR while we waited.  Each time, the nurse told us that Silas was doing great, and things were progressing nicely.  On the last call, about two hours after the ENT had talked to us, we were told that the doctor was stitching Silas up. About an hour after that, the oral surgeon came out to tell us how it went.  We were led into a consultation room with the doctor and his assistant.  They were elated at how well Silas did.  He was able to remove the tooth in the palate (and even saved it for us since it's his first baby tooth!)  The doctor was able to fully close both of the fistulae, and placed tissue grafts to reinforce the areas.    He had plenty of tissue to close the areas, and said they closed beautifully.   Now, we just have to make sure he heals without incident.  Part of the healing process involves the wearing of arm restraints called "no-no's."  Needless to say, Silas hates them.  It's going to be a challenge to keep him in those for three weeks!

When we got to our room in the Special Care Unit, Silas  was awake, and NOT happy.  He was pretty upset for the better part of the afternoon, and would not allow anyone to calm him down.  When the doctor came to visit, he told me they see this reaction a lot in children under 3.  The process of the anesthesia wearing off is not fun for kids.  They feel loopy, and to them it's very scary.  The doctor described it as feeling like "a bad trip."  Um...okay.  :-)  In any event, Silas basically screamed for about 4 straight hours.  No amount of morphine, tylenol or motrin would calm him.

The anesthesia wore off by around 5 p.m., just in time for Brian to arrive back a the hospital from work.  Daddy and Silas spent some quality time cuddling and watching videos on the iPhone, which lulled the little guy to sleep.  Finally!

While he looks a little tough in this picture, Silas has had a pretty good night, so far.  The morphine doses are getting further apart, and he's sleeping peacefully.  He may make it through the night without an injection.  That would be good progress!  Will update again when we get home....

Happy Fourth!

We're having a great holiday weekend so far, even if the weather has been less than stellar.  Yesterday, Silas was visited by his Aunt Jessica, Uncle Carl, and canine cousin, Maizey.  It was very nice to spend some quality time with them.

Silas had a ball, and was absolutely wiped out by the end of the day.  We celebrated the birth of the nation with a swim in the backyard kiddie pool, and a good old-fashioned holiday feast featuring Maine lobsters, pulled pork, homemade coleslaw, potato salad, corn on the cob, baked beans, blueberry pie and cupcakes!  

Unfortunately, we didn't make it to the fireworks.  When it started raining shortly before they were scheduled to start, we opted to skip them and let the little guy get some sleep.  He's got a big week coming up, and needs all the rest he can get!

Surgery Scheduled

Silas will be having surgery on Tuesday, July 6, to insert ear tubes and to repair the two holes left in his palate after his cleft repair.  We had our pre-op visit with the oral surgeon this morning, and feel very comfortable with him.  While we are nervous about the outcome, we know our boy is in good hands.

We will be going to the hospital at 5:30 a.m. on Tuesday.  Silas is the first case at 7:00 a.m.  After Silas is given anesthesia and is sleeping, the ENT will insert the ear tubes, which takes about 5 minutes.  Then the oral surgeon will go to work on the palate.  He said it could take up to 2 hours to complete the work.   The hole near the front of Silas' mouth is complicated by a tooth that is growing there.  The doctor is going to have to pull the tooth before he does the repair.  If after pulling the tooth, there is not enough tissue to close the hole, the doctor said he may decide that he can't do it, but he's hopeful that won't be the case.  At least we're aware of all the possible scenarios.

Silas will have to stay in the hospital Tuesday and Wednesday night to have his airway monitored.  Barring any other complications, we will get to come home on Thursday.  Unfortunately for Silas, recovery means no thumb-sucking.  He will have "No-No's" put on his arms to keep him from bending his elbows and putting his hands in his mouth, and will have to wear them for two weeks.    He will also have to revert back to baby food until the wounds heal.  He's not going to be a very happy camper for a couple of weeks, but we know these surgeries will help him with this speech and growth, so it's necessary.  Thankfully, we'll be able to stay in the hospital with him overnight, so he won't be as scared.  I can't imagine having to leave him there by himself.

We'll post an update after the surgery...