We’ve been home for about a week and we are just beginning to get settled in here, but there’s so much that still needs to get done, it’s pretty much overwhelming everywhere I look. Half of my bathroom and kitchen cabinets won’t close anymore which means they all need to be cleaned out and reorganized from about 6 weeks of shoving things inside of them. You practically need to be a hurdler to get into my office which is overstuffed with boxes, paperwork, and piles of items that need to go into storage. Something is very wrong with my home phone where one headset refuses to find a signal while the other one doesn’t hold a charge. This wouldn’t be a big deal if my cell phone hadn’t blown up last night, I can’t use it for anything, but the alarms I have programed are going off without fail round the clock, awesome. Our bed, which is about 10 years old, now makes a horrible creaking noise every time we climb in and the pain radiates down my lower back every time I climb out. And at some point I’m going to have to clean out all the baby food out of the freezer that Aleck now refuses to eat, if I ever want to put anything else in there, not to mention giving that broken drawer where most of it is stashed a much needed break. Aaaahhh, it’s good to be home.
Actually, it really is. Home is such a funny concept very often defined by an actual location, the company you are keeping, or a state of mind. While we were at the RIC, Craig would call me everyday as he was heading there after work, the same call he used to make when heading home after a day of work. And more often then not I would respond to him by saying, “Love you. I’ll see you when you get home.” The first time I said it he found himself practically speechless, finally saying in pure disbelief, “Do you know you just called the RIC home?” But no matter how many times he corrected me, I found myself saying it almost every single evening. Finally I just announced to him, “Home is where Aleck is,” to which he responded, “Home is where we all are”. But we weren’t all at the RIC, not for the majority of time, and since we were living there, it had to be home, even if just for the moment. When I’d get my nights off during the week and head to our actual condo it felt cold, empty, and if I let the thoughts linger too long, sad. At first I relished the alone time, the ability to sleep without worrying about the little man in the other room, without having to fight for the covers in the middle of the night, wondering how different it could all be if I had chosen another path, chosen not to get back together with Craig, not to have babies. That all passed quickly and eventually every time I came home I saw a house full of ghosts, alive and dead. Aleck playing on the floor of the living room, Craig sitting on the couch watching Family Guy and of course Sadie snuggled up by the front door dutifully protecting our home. Even as I would sit here in front of my computer I would jump at every single sound, every noise from surrounding floors, surrounding buildings, thinking that someone wanted or needed my attention. It was time to check on Aleck, Craig was about to come in and wonder when I would finally get to bed, Sadie needed to go outside to do her business.After seeing how exhausted I would be upon returning to the RIC, since nothing tells you how tired you are like a good nights sleep, he started insisting that I take two nights in a row during the week. I started insisting I only take one night a week in total, figuring I was loosing either way. Being home alone was no longer the luxury it should have been.
On weekends when we didn’t have many visitors and had already completed the therapies, nurses and staff often wondered if we were going to take Aleck home for the day. Craig and I talked about it quite often. Aleck acclimated so well to the RIC, sleeping decently through the night, taking his naps, enjoying our walks down Michigan Ave, we didn’t want to throw him off, we didn’t want to confuse him. For this period of time, the RIC was where he needed to be, and when it was all over we would take him home. The psychologist there suggested I start talking to Aleck about home a few days before we were released, explaining that he’s so smart he’ll understand what I’m talking about. Well, the last four days were just insane and the idea of this “talk” felt so forced I just didn’t make it a priority. So of course I panicked a bit when we did shove off to go home, the first time Aleck had been in our car in almost 6 weeks, but it was too late. We would just have to see how he reacted. As I opened the back door Aleck started to shake with excitement, he knew where we were and he looked just as excited as I was to be back, if he had a tail he would have wagged it. Now, as he shakes each time I open that back door to enter in our condo, I look at him and tell him “Home”, “we’re home Aleck.”
Aside from our organizational issues, it’s been quite the drama since we’ve left the RIC. Our insurance company was withholding Aleck’s new acid reflux medication, claiming they needed further authorization from our doctor despite the pages of doctors who had already diagnosed him with acid reflux since he was two months old. Supposedly the Prilosec for babies is a very expensive option at about $40 a bottle. With each day we had promises from the doctors they sent in the paperwork, from the insurance company that it would all go through if we jumped through every single hoop, but in the evening we didn’t have the medication. On Monday he threw up once, on Tuesday he threw up twice, on Wednesday he threw up three times, the last one during his sleep. When we went to grab him his stomach was convulsing in and out, trying to throw up again but there was nothing left. We gave him water, we got him changed, I washed the puke off of my legs and we headed to the emergency room. After 4.5 hours they let us go chalking up the puking to not having his acid reflux medication. So instead of paying the $40 a bottle which we ended up purchasing ourselves, our insurance company paid for a visit to the new Children’s emergency room. What a great financial decision. The best part about the evening, besides not waking up in a hospital room with Aleck on an IV , was signing us out of the hospital. When we signed the papers in it was 9:45PM on 11/21, when we left it was 2:00AM on 11/22. After signing and dating, I looked up at Craig in front of the nurse and said, “Happy Anniversary Baby.”
Needless to say we ended up passing on the trip to Michigan fearing a 5 hour car ride with a puking infant, that’s way too much distance between us and our washer and dryer. Thankfully, since he’s been back on the meds he’s been vomit free. He’s not eating as much as he was in the RIC so we are working on the doses of Miralax, additions of suppositories, and other fun filled party favors to get his poopy going. We took out the NJ tube when he threw up 6 centimeters of it after I tried to secure it back to his nose on Monday night. Even in the RIC he had been rubbing the tape off his nose every single day by rubbing his face into his crib mattress. The nose isn’t the only place it was taped, there was a huge piece of tape and other fun fastening devices on his cheek, but if the nose wasn’t secured he would push the tube out in his sleep, he had done it before. Maybe it was uncomfortable for him, the snot certainly didn’t help. Since the first “N” tube was inserted his nose valve was set to “on” and remained that way for weeks. But with the NG it wasn’t that big of a deal because you can easily place that tube in your home, but the NJ has to be done in radiology. Either way, we’ve decided we are done with anything that goes up Aleck’s nose (insert multiple inappropriate drug related jokes here, and if you don’t have any give me a buzz…I’ve got plenty). Since he’s not eating as much as he should we are doing sleep feeds, picking him up at about 10:45PM and 2:45AM to cram an additional 3 oz per bottle into his system. He’s averaging 4-5 ounces a night, which is more than we got in him with either feeding tube, it’s staying down in his belly, and even though he’s sleeping he is still able to tell us when he’s done eating, something he couldn’t do with any of the feeding tubes. So we are back dealing with our newborn 13 month old again, but minus the crying, the screaming, and the fact that it used to take me two hours to feed him and get him back to bed at 3am which was such a killer. Now the whole process takes 20 minutes and I’m back under my covers in no time. We are a little sleep deprived, but it’s nothing new, at least we are all home.