So when I left off in my last post, Eli had gotten RSV. We were in the hospital for 6 days with him, and he was very very sick. They had to force me to leave him to go home and shower- I was afraid he would die if I left, and once the nurse threatened to have a doctor admit me because I had fallen down in the night from exhaustion. The previous 6 weeks of no sleep plus now being in the hospital had left me completely beaten. The Zantac wasn't helping much.
When we got home from the hospital, we started a new medication- Prilosec. Like the Zantac, we were told it could take up to two weeks to kick in. This began the worst period of time for us. One of the hard truths about reflux is that the medicine helps, but doesn't cure. You wait weeks for the medicine to kick in, get a little relief, and then as the baby gains weight, the medicine becomes less effective, and you start all over.
Let me say that I know most new mothers are exhausted. I am not saying I had it worse than anyone ever. But I do think most "normal" babies take a break and sleep now and then. Eli would doze off for 20 minutes or so, tops, and I couldn't rest during that time because of Seth. The nights were really no better. Forget sleep training or a schedule. And his "awake time" offered no breaks- he wouldn't go in a swing, bouncy seat, car seat, on the floor on a blanket- nothing, without screaming. I carried him around, which started to get harder as he gained weight. Thank goodness for my sling, which I did use a lot during that time. And for my husband, who held him whenever he was home. We ate out a lot because I couldn't even put him down to make dinner. I turned over a lot of my work at my job to my friend Megan, because I knew I couldn't leave Eli with anyone. My boss allowed me to keep my job by doing the bare minimum. Friends advised me to "enjoy this time because it goes so fast." While I wanted to enjoy my baby, and I tried to find the joy in my life every single day, I WANTED it to go fast. It didn't. It went slow.
Eli was exhausted and miserable, too, and it was a vicious cycle- getting overtired, crying, passing out once in awhile for a short time, waking up cranky, griping and moaning in pain and crying if I put him down, etc. He also developed what I know now to be called "Sandifer's Syndrome" from the reflux. Refluxing babies often crane their neck away from their stomach to try and get away from the pain. My sister Katy saw him doing this and started crying. She thought there was something else wrong with him- Sandifer's can be mistaken for seizures. He would arch so forcefully and strain that this left his muscles all out of whack, and his back sort of out of alignment. Our pediatrician gave me some advice on exercises, but said he'd have to have actual physical therapy if it didn't improve. He couldn't work on any of his baby skills, like tummy time, pushing up, sitting, or anything because he was too sick. Here is a picture of his "normal" posture laying down during this time- back arched and hips twisted. That "I'm miserable" look hardly ever left his face.
All of this from a little reflux? Yes. Every feeding was like putting fire into his belly. Most babies are comforted by milk/formula. I remember with Seth, we called it his "milk coma." He'd eat and just blissfully start to drift off to sleep. It was opposite with Eli. I dreaded feeding him because I knew it would set in motion at least 90 minutes of terrible time for us- that was after the hour-long feeding session. Josh would walk out the door for work and I would bawl for hours. I felt so inadequate as a mother- to both my kids- Seth was largely being ignored as I took care of Eli. It's a huge blessing that Seth is so easily entertained. I would get him started on some activity and he could do that for an hour. That, and the evil television...I let him watch more TV than ever before in his life. So I was plagued with guilt on top of the sleep deprivation, feelings of inadequacy, major anxiety and worry. Would life always be this terrible?
I still say that part of what was so terrible was the lack of understanding from people. I swear, most of the time if someone came over- my mom, my sisters, my friends- Eli turned on the charm. He looked healthy (chunky!), and loved to be held- who doesn't love a cuddly baby? Since he was sleeping better, he was a little more content. Another reflux truth: it is very cyclical. So he'd have 2 good days, then 3 bad days, then 3 good days, etc. Here I was, drowning in my life, but some people caught us on good days and only saw a fairly normal, chunky, sweet baby. I needed people to say, "wow- this sucks. I am so sorry for you." and to cry with me. I wanted validation that what we were going through was abnormally hard. I am not blaming anyone here- just saying that it was also hard that on the surface it looked like things couldn't possibly be that bad for us.
And there was no one to really help Josh and me. People did offer- don't get me wrong- and our church family brought meals, sent emails and texts of support, and visited. My friend Hollie took Seth one day a week in the mornings so he could play with her kids, and Seth went to Parent's Day Out one day a week. But at the end of the day, it was still me, on the front lines, day in and day out, with this mess. I knew it would get better. I knew this wasn't a terminal disease. I knew so many people had it so much worse. But at the time, I was struggling- majorly.
Once the Prilosec kicked in, he did start to do slightly better- I remember once he took a nap for an hour. I was so excited. But that didn't happen often. I remember telling my friend Megan that Eli had "5 happy minutes" one day. She laughed. I was serious. That was the best time we'd had with him.
I knew we had to get a handle on our life, as things were really falling apart. We started a process of rocking and holding Eli so he would start taking better naps. This resulted in hours upon hours in the rocking chair every day. It was ridiculous, but we didn't care. The sleep that he got during that time resulted in him not being so much of a mess all the time. I had to let go of my worries that I was ruining him and his sleep patterns for life. He was still pretty sick, but at least he wasn't sleep-deprived too. He managed to sleep in his bassinet some overnight, so that was good too, but I still had to hold him a lot at night. Josh would get up at 5 AM to take over rocking for me so I could sleep for an hour and then shower. I was now getting about 4-5 hours of sleep per night, in 7 or 8 chunks. So maybe an hour, then 45 minutes, then 30 minutes, then an hour...etc. It felt like torture. Especially when it was time to "get up" for the day and take care of two kids again.
Finally, at one of Eli's well checks, our pediatrician decided it was time for a referral to a specialist. Praise God. I was hoping this would be our answer. We were able to get in fast because of a cancellation. So we took Eli to Children's Mercy for his first of many visits. We were given a prescription for Nexium and sent on our way. Eli was now three months old. About a week after starting the Nexium, he smiled. Actually smiled! At me! And he started PLAYING! Yep, I could put him down and he would play on the floor or on the bed with me. It was amazing. His sleeps was still bad, though. Another thing about reflux: it's worse when you sleep. When you're lying down, gravity brings stuff up, and lots of stuff happens to your body when you sleep that causes more pain, such as loosening of the muscles that hold your food in your stomach. So even if he had a happy day, he could still have a horrendous night.
So I think I'll end here for this entry. This was around age 4 months for Eli. On Nexium, becoming happier, sleep improving some but still not in the realm of what I'd call "good." It overwhelms me to think back to this time period. It was terrible. It's hard to say that, because I love Eli so so so much. But I don't think he was having any fun either. He was thinking, "Man, if this is what life is all about, this STINKS!" For those of you who need to know that there are happier things ahead, here's a picture of him recently...so hang in there for the rest of the story!
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