Since We’ve Been Home

I have to admit I was really nervous about bringing Aleck home from the hospital.  Still reeling from his overdose on pain medication, and totally unsure about how to do the usual activities, it felt like bringing home an 11 month old newborn.  We had to learn how to diaper him.  We had to learn how to feed him; he doesn’t fit in his high chair and can’t be propped upright.  We had to learn how to hold him; the cast weighs a good eight to ten pounds and is very cumbersome.  We had to learn how to burp him; he barely has any back showing for me to pat.  We had to learn how to play with him; will he be happy lying on the floor, can he even reach for his toys? And most of all we had to figure out how to manage his pain at home and keep him breathing.  I honestly think I checked on his breathing more often these past few weeks than I did during the first weeks of his life.

The first week wasn’t too bad.  I was a wreck, more exhausted than I’ve been in a long time, I didn’t move from the couch for the first day and a half.  Didn’t care if the TV was on or not, didn’t want to have conversations with anyone, and was relieved that Aleck was sleeping most of the time and still enjoying his heavy duty pain medication.  We would take turns waking him up to give him his pain meds every four hours, trying to schedule it like we used to do with his feedings when he first came home; an 11pm dose followed by a 3am, then a 7am, so we weren’t total zombies.  Even with flavoring the medicine tasted terrible and we would quickly give him his pacifier with some “sweetie” squirted on it, a sugar solution we got from the nurses at the hospital.

We had to change the taping the nurse did on his cast during the first week home. It was clearly soiled, and needed to be replaced.  Now, when the nurse was taping him up it was the day of the surgery, Aleck was screaming, and she had made this crazy sunburst pattern of surgical tape all along the front and back of the opening of his cast.  It took her a good 30 minutes to get that thing done and I was not looking forward to trying to recreate it.  Once we ripped off all the tape we noticed that the entire inside stuffing of his cast was soaked in urine.  My little boy smelled like a porta potty and it was not pretty.  Plus, since it was wet, I couldn’t get the tape to even stick on the inside of the cast.  Luckily I had watched some videos of people taking care of Spica casts before the surgery and ran to grab some panty liners.  I then made my own sunburst pattern of panty liners, half in and half out of the cast, secured down with surgical tape, on the front and back of the opening.  It wasn’t pretty, it wasn’t perfect, there was barely room to cram them up there, but it was better than nothing.  Thankfully diaper brands like Pampers scents their diapers so once he was diapered and ready to go you couldn’t smell the urine quite as much through the baby powder perfume, yuck. After a week though the inside of the cast dried up and the panty liners are working really well.  They have to be changed every 4-5 days or once they get soiled, but it’s made him much less stinky.

For diapering we’ve been using the two diaper system, a size 1 or 2 diaper, with the sides and top trimmed, shoved in the front and back of the cast.  I’ve even been taking the time to arrange his pecker so it’s pointing downward, another precaution to prevent soaking.  Then we take a size 5 diaper and wrap it around the outside of the entire cast to keep the smaller diaper in place.  Aleck’s surgeon laughed saying if we were using the panty liners we didn’t need the two diaper system, we could just use the big diaper, but this is working really well here and not having to re-do the sunburst pattern everyday gives me more time to play or go for walks, and reduces my desire to tear my hair out from the root or stick forks in my leg.

Feeding time is on a wedge pillow on the couch.  When he first came home Aleck spent most of his time here as I desperately tried to introduce him to Sesame Street and Baby Einstein videos to no avail, but now it’s primarily for eating and drinking.  The pillow is covered in receiving blankets and a big towel folded under the top half of Aleck so when the food goes everywhere it’s easy to clean up the mess.  He’s doing OK here, taking his bottles, eating matzah balls and brisket leftover from Rosh Hashannah dinner, and spilling his sippy cups of water all over everything.  The pillow has enough room to line up a favorite toy on either side to keep him occupied as I prepare one course or another.  As a place to play and hang out during the day, Aleck has made it clear he’d rather be on flatter surfaces, since I would find him sideways, his head dangling from the pillow, bringing him his breakfast, with a huge smile on his face.

So playtime is now on the floor on a blanket or on the couch on a blanket, and he’s figured out how to rotate himself in a circle to get closer to his desired toys or just to get closer to my leg.  We read books, a lot of touch and feel or flip up books, so he can practice reaching those arms and using his upper body. Recently my OT cut a piece of foam core to fit around his waist and we attached various small toys on ribbons, strings, and elastic for him to enjoy.  He’s really into this activity and it’s been a nice change to have some more games we can play together.  I had also picked out a pack of wooden cars with different handles on them made by Parents, and they’ve been a hit.  The rubber wheels can be used on the rim of his cast, encouraging him to hold the car with both hands and move it along the rim while I make car noises (you’ve got to have the car noises).  If I want to  walk away from him for a few minutes I can give him his Leapfrog ball, the one that plays music while he spins it, and he can easily play with that without me for a bit which is really convenient when it’s time to make a bottle or change the laundry, you know, the exciting stuff.

Some of the more difficult challenges we’ve had to face have come with dealing with his medication, and getting him down for naps and at night.  The Friday after we got home I tried to switch him to a constant dosing of Children’s Tylenol and Aleck was furious.  He made it through the first four hours without his narcotics, but an hour into his second dose of Tylenol it was clear I messed up big time.  My mom was over and the poor little guy was practically inconsolable, refusing to nap, and refusing to stop crying throughout the rest of the day.  We were counting down the minutes until the four hours were up and we could give him his heavy drugs again, it felt like an eternity.  So it was back to the Hydracodone.  Then on the following Monday as I tried to give him his dosing, he became irate, and refused to swallow the nasty stuff.  I tried shoving his pacifier with the sweetie in his mouth and as we were doing battle, he threw up all over the living room. Aleck got his message to me loud and clear, we were officially done with the heavy stuff.

Being off the narcotics brought on a whole new series of issues.  Now his head was clear, his emotions were clear, and he was no longer content to crack up at the ceiling, which had been hilarious to watch.  Nap time became a battle and bedtime became a nightmare.  He would get himself so worked up at bedtime that he would throw up all over the crib, and all over himself.  Craig was in charge of stripping the crib and mopping the floor, I was in charge of sponge bathing the puke covered baby (right, because you can’t put him in a bath in that cast) and we were regularly doing laundry through the wee hours of the night.  OK, we thought, we can’t let him cry anymore.  But let’s define how much we were letting him cry.  We wouldn’t leave him alone for no more than 3.5 minutes, no joke, and the deed was done.  Some nights I found myself running into his room every 45 seconds or so, calming him back down, and desperately trying to make another exit.  Craig wasn’t even allowed to try anymore since Aleck refused to stop crying for his daddy, even when in his daddy’s arms.  That was hard on me since we couldn’t tag team, and hard on Craig since he couldn’t soothe his own baby.  After a week of this I knew something had to be done, we needed to change tactics for all our sakes.  With Aleck vomiting he’s not gaining enough weight, getting enough nutrients, and for us, well, we were just feeling beaten down and very worried about our little man.  What made it even worse is that he was waking up SEVEN times in the middle of the night.  As I said before, we had a newborn on our hands. Hell, he didn’t wake up that many times even when he was a colicky disaster.  Craig and I were walking zombies.

Then I had a lightbulb.  Valium.  They sent us home with a bottle of Valium to help with the pain.  We weren’t using it, the pain seemed to be under control, why pump him with extra.  But what if we gave him his dose, a mere .4ml, thirty minutes to an hour before bed.  Of course this was followed by 3 extra books being read at bedtime, 3 additional songs before going down to bed while burping to make sure all the bubbles were out of his tummy, and then I stand next to crib as he holds my hand and watches the mobile, only leaving once he’s let go of my fingers. If he cries at all I go right back in the room to calm him down, no waiting for a minute to pass.  We’ve had four nights where I haven’t had to go back in his room after saying goodnight. Whew.  No more vomit.  Plus, he’s only waking up three times in the middle of the night which feels like a freaking vacation after what we’ve been through.  I find myself going, “Yeah, I got four hours of sleep all in a row, amazing” and then remember saying that to myself almost a year ago.  Too funny.  Craig is worried that I’m turning our son into the next Real Housewife of Chicago, but I’m not worried.  Everyone is functioning, everyone is keeping their food down, we can keep our eyes open during the day, and most of all we can both breathe a whole lot easier, for now.

It’s been just over three weeks since the surgery, and like many other times during this past year, it’s been the slowest three weeks ever.  But now that we’ve hit our stride, we’ve got our schedule down, we’re going for walks and playing with new toys and activities, I think these next three weeks are going to fly by.  I’ve loaded up the Ipad with some games, and he’s been fitted for a new set of elbow splints that will just blow your mind.  They allow for him to bend and straighten his elbows and they turn his arms and hands into a more effective position for playing.  It was a little jarring to see this contraption on him, pictured above, and we still have some kinks to work out, but overall he seems to like the mobility it provides.  In addition our OT ordered this really cool bottle holder that lets Aleck hold his bottle while he’s drinking it.  Now, he can’t do it completely on his own, practice will hopefully make perfect, but it is opening up the idea to him that he can feed himself, something his peers have been doing for months.  As always, I’m hoping this makes for a hungrier baby, but you never know.

Right now October 9th, the day before his first birthday, is the day the cast will be coming off.  We’ve signed on to go immediately into an inpatient program at the Rehabilitation Institute of Chicago that will last anywhere between 10 days and two weeks.  There Aleck will stay for the duration, and I will be with him as well – hopefully Craig on the weekends, and he’ll get 3 hours of physical therapy everyday, pool therapy, and hopefully occupational therapy as well.  I’m really excited about the program, the idea of intensive therapy for Aleck sounds like something he really needs and I know he’ll benefit from all the extra work and attention.  However, I’m leery about giving up my bed again, sleep being such a precious commodity these days.  But what can you do.  In the end, if it’s best for Aleck it’s at the top of our agenda, and that’s what’s most important right now.