Katie's Reflux

Katie's story is almost the opposite of Eli's so I thought it would be nice to share that too. Katie is what is known as a happy spitter. She spit up after every feeding, sometimes so much that I couldn't imagine that she had kept anything in. She would spit up any time from right after a feeding up to an hour after her feeding. I believe I first asked about Katie's spit up at her 2 week check up. Her doctor told me that every baby has some form of reflux up until they are 1 year old because their digestive track isn't completely developed. Since Katie was a happy spitter, meaning she showed no discomfort, he recommended that we not medicate as long as she was gaining weight consistently. The medication does not reduce the spitting up, just the pain associated with it.

Brayden was also a spitter, so it was easy for us to know what we needed to be prepared. First, we used cloth diapers to clean the mess up. I always had at least 2 on the arm of the couch where we did our feedings. We also staged them throughout the house having one in at least each room that Katie spent time in. At the first sign of spit up, one of us would yell "Diaper Cloth" and whoever was closest to the cloth in the room would toss it to the person closest to Katie. It was actually kind of fun at times. I also never left without at least 3 changes of clothes for Katie and an extra shirt for myself. There were many times I used all 3 outfits in one outing. One item we had that helped with Brayden was our dogs. When he was a baby we had 2 dogs that lived in the house. As gross as it sounds, they loved to "help" clean up the spit up. I never knew how great it was until we faced the same situation with Katie without the dogs. Our couch and carpets were littered with stains. Let's face it, I had no time to break out the Resolve every time Katie spit up.

I incorrectly assumed that Katie's reflux would get better when she started eating solid food. This was NOT the case. If anything, she was so excited about eating real food that she would overeat and spit up even more. Our carpet was constantly decorated with orange spots since Katie's favorites were carrots and sweet potatoes. I tried everything including a steam cleaner to get the spots up. Eventually they faded with time, thank goodness!

Katie's spit up was less frequent when she began eating finger foods. She began this a bit earlier than most kids, I think because she would watch Stephanie and Brayden eat and wanted to be more like them. By the time she was 7 months old she was almost exclusively self feeding. Her spitting up tapered off and was almost completely gone by the time she was 10 months old.

Since Katie is getting fussy, I really don't have time for a proper conclusion. I hope this gives a glance into the mild side of reflux though. Except for some extra cleaning, it really did not affect our life at all.

Our Reflux Experience- Part 3 (Final)

When I left off, Eli had just started Nexium and we were seeing some good changes. His Sandifer's Syndrome went away, he could play on the floor, he gained control of his head/neck and his muscle issues got resolved. His nighttime sleep started improving: he would sleep about 4-5 hours straight, but then be up and down the rest of the night. For me, this was a huge improvement. But still not good, right?

We saw our GI doc again in April. He upped Eli's Nexium and also recommended we start another drug, called Reglan, to help with gastric emptying, as he felt that Eli's tummy wasn't moving things through fast enough. Reglan has some scary side effects, and I decided not to give it to him. However, he also diagnosed him Milk/Soy Protein Intolerance. We had probably missed this all along because I hadn't been eating dairy- I had gone off of dairy (mostly) when Eli was born because I knew my husband had problems with it as a baby. I will do another post about that, but we had sort of ignored his MSPI issues because his reflux was so bad- I didn't know the two were interrelated. The GI doc had no real advice except to switch him to formula. Anyway, I decided to get serious about the MSPI so we thought we'd go ahead with that- the expensive kind of formula - that didn't have any Milk or Soy.  However, Eli had other plans, and he refused the bottle. So I started researching how to breastfeed with a baby who had MSPI. I finally got some help from this blog, and my friend Hailey, whose baby Knox had it too.

I had no idea how much soy I was ingesting, and also feeding to Eli directly, through Gerber Rice Cereal. The night we stopped the Gerber cereal, Eli slept so much better. He also began to nap better in the day. I was shocked. I went on a strict no dairy/no soy diet. This has been an additional personal struggle for me because I LOVE DAIRY and I love food in general. But seeing the change in Eli made it worth it.

I was now able to go to work one morning a week, thanks to my wonderful friend Ann Marie who watched Eli for the morning. Her baby Hailey had colic, so she was familiar with the challenges and told me she'd hold him all morning if that's what he needed. Thankfully, she didn't have to do that every time because he was getting better, but I was so incredibly grateful to her because I knew I could count on her to love my baby and care for him, even if he was fussy and sick all the time.

We also were able to start putting him in his crib for naps. It was a miracle- one day after he'd been at Ann Marie's all morning, we came home and it was naptime. He was clearly wanting to play, so I put him in his crib and sat down in the rocker. He played and played and then got silent...I looked over and he was ASLEEP! I couldn't believe it. We were able to keep moving forward with him napping in his crib and it was a huge relief to all of us. 

Remember how I said that reflux is back and forth? We often say it's two steps forward, one step back. He was doing better, but then new, strange symptoms started showing up in May/June. For one, he started actually throwing up. Tons. He vomited all over me all the time. And it was hours after he'd eaten. Often times, he'd nurse, be up for 3 hours, take a 45 minute nap, then wake and vomit. So we increased his Nexium again. But as time went on, he got worse and worse again. He couldn't be in a sitting position without vomiting. My mom was watching him during this time and noticed he was regressing. It became more than two steps forward, one step back. It became 2 steps forward, 12 steps back. He was a wreck again, most of the time. At night, he'd sleep maybe 3 hours, then be up all night- crying, fussing, etc- I'd hold him and walk around the room, and he'd pull his knees up and squirm and scream. It seemed like he was in pain again, but maybe a different kind of pain.

I had finally had it with our GI doc. He was helpful in some ways, but because Eli was growing great, I felt like he had brushed us off. I wanted to hear from someone else. I knew there had to be another piece of this puzzle. I called and talked to the nurse, and she actually recommended switching to another doc at Children's Mercy. Her name is Dr. Jennifer McCullough, and she is about my age- she actually has a daughter who is one month younger than Eli. We met with her in August. She recommended a scope for Eli, where they would look at his esophagus, stomach and part of his bowels. She also said he was taking way too much Nexium for her comfort (we later found out that Nexium can actually INHIBIT gastric emptying, which would explain his vomiting and the fact that he was getting worse instead of better), and we had to trust her as she switched him back to Prilosec. We were terrified, and the first weekend we switched was a disaster. But then it got better. Eli had his scope (a test the first doctor should've done a long time ago). The night before his scope, we had to give him an enema. He cried through the whole thing, but then slept better than he ever had before that night. So we knew there were probably some lower GI issues going on as well.  The scope revealed that he had some colon inflammation. Dr. McCullough decided this was possibly due to constipation issues. We started him on some Miralax, and things began to "flow", so to speak. Constipation doesn't mean he doesn't go very much- in fact, he went pretty regularly- but it means the colon doesn't empty completely, and gets irritated and swollen. This seemed right in line with his symptoms. His overnight cramping stopped, and he seemed to finally be comfortable! So...

I appreciate if you've read this far. Basically, I wanted to chronicle what we've gone through and post it so if you're having any similar issues with your baby, you might know where to find help.  Eli has some fairly minor Upper and Lower GI issues, but they completely wrecked our life for awhile.We thought reflux was the only culprit, but had to press on to discover the MSPI and the way his constipation was affecting his colon.

For me, part of this journey has been about remembering that I am Eli's advocate. He can't tell us what's wrong, and he certainly can't call the doctor about it. There were times I felt like the nagging mom who had to call the doctor for the hundredth time. But I knew he was feeling terrible and I wasn't going to just be ok with that. So I pushed. And pushed. And finally got some answers and help. Don't get me wrong- all the doctors we've seen tried to help and agreed there was something wrong that needed fixing. But it took lots of follow-ups and phone calls to figure it out, and I had to be proactive in learning about the issues myself.

So where are we today? Well, Eli's taking Prilosec and Miralax regularly. He's starting to eat solid foods (we met with a dietitian this week to discuss how we'll move forward when I'm done breastfeeding since he can't have whole milk). He is taking 2 naps a day in his crib- usually one short one and one long one. He is sleeping better at night. He isn't in constant pain. You can see on his face that he's finally a happy kid! He's super active and running me ragged! So now it's about managing his medication, being careful about foods, and the every day ups and downs of being a mom to a pre-toddler (oh the teething!). But at least it's not about constant pain and agony for all of us! 

Our Reflux Experience- Part 2

One thing you need to know about reflux is that it's like a lot of ailments, such as allergies or migraine headaches. There is a huge range of what "reflux" means. Someone can say their baby has reflux, and it might mean they spit up a little and need some Zantac, but they eat and sleep great and are mostly fine. Someone else's baby can have it and have to be hospitalized and tube fed. Eli fell somewhere in the middle of these two extremes.  When he was first diagnosed, I was relieved and hopeful. I thought we'd have this minor challenge in our lives for awhile, and then we'd get into a normal baby routine.

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!

Our Reflux Experience- Part 1

I thought it was about time I explain what we've been through with Eli's reflux.  I will do a couple of different posts about this because it is a huge topic.

"Isn't reflux just like baby heartburn?" "Oh yah, my kid spit up tons too." "He'll sleep when he's tired." "He just wants his mommy- he's spoiled."

These are all statements people have said to us that showed that many people do not understand the scope of infant reflux, and the continuation of that, called GERD, which is what Eli has.

I'd never heard of infant reflux before Eli was born. When he was born, he seemed like a "normal" healthy baby, besides some immediate weight loss (13% of his body weight) and mild jaundice.  Both of these things resolved by 1 week.  However, when he was 12 days old, he became a mess. On that day, he woke up at 6 AM, cried and fussed all day, and when I finally called the NurseLine at midnight, he had slept a TOTAL of 45 minutes that day. The Nurseline advised us to bring him in, but we thought we'd wait it out and see our pediatrician the next day.  She immediately ordered a battery of blood tests and other tests. Seeing him lay there on the table and squirm and cry and do what we called "griping" was very concerning to her. Oh- the griping. He was 12 days old and already groaning in pain. So when all the tests came back negative, she decided it must be reflux. Now, to be clear- Eli did NOT spit up much. Instead, we would see him retching, as if to vomit, then swallowing (or choking) stuff back down. Anyway, our pediatrician called this "Silent Reflux" and said that while his weight was good, this kind of reflux can be twice as painful because the acid was burning on the way up AND the way down. She put him on Zantac. We went through an Upper GI test when he was 5 weeks old to rule out other problems. Through this time he was NOT improving.

We were unable to EVER put him down on his back (a complication for sleeping!).  He would cry in pain if we put him down. He would arch his back away from me so hard I could hardly hold him. He would cry and fuss through every feeding- leading to feeding sessions taking over an hour at least. He barely napped- he hardly slept at all, which means neither did I.  He was only comfortable being held in certain positions, and he HAD to be held all the time.

Through this time, once again, I want to say that many people did not understand our problems. People seemed to be wondering what the heck was wrong with US. "Just let him cry"- they would say. Well, the more he cried, the more sick he got, and then the more he cried, and the more sick...you get the picture. We couldn't take Eli anywhere- he was too fussy. We couldn't hang out with friends or do anything. I had no idea how I'd ever go back to work. I couldn't put him down long enough to go to the bathroom- how could I make dinner or go anywhere?

We went back to the pediatrician who gave us a prescription for Prilosec.  Eli was now 6 weeks old, and it had just been a terrible 6 weeks.  We weren't able to show off our wonderful new baby to anyone, and he was a complete wreck. Plus we were having a terrible winter and I was stuck home all day with a mess-of-a-baby and a three-year-old with his own issues. I actually didn't take very many pictures of this time period. It wasn't intentional. I regret it now. But I was so busy caring for him, and I didn't want to remember this miserable time. I didn't want to remember him as just a complete mess who only cried and was never happy. I didn't want HIM to see it later in life because it made me feel like a bad mom.  What kind of mother can't comfort her baby?

And just when it seemed that things couldn't get worse, Eli got RSV and had to be hospitalized. I did a post about that, here it is.  So I'll end this first post here. My next post will pick up after the RSV.

Our Family

I thought I would do an introduction to our family like Shannon did.  I have two children- Seth, age 3 1/2, and Elijah (Eli), age 7 months.  We adopted Seth when he was 9 months old, and he was the easiest baby in the world to care for.  He was ultra-content, slept like an angel, ate good and was just so easy to take places. In general, he is a typical three-year old now, but still super easy and has a great attention span.  This has been a blessing since the birth of Eli, who has been a very difficult baby to care for.  Eli was diagnosed with reflux when he wasn't even 3 weeks old.  He barely ever slept (most newborns are supposed to sleep 18-20 hours a day- we were lucky to get 12 in several 30-45 min chunks), and when he did sleep, it was restless and full of struggling.  He was never content, and just cried or squirmed and moaned when he was awake.  I don't think I put him down during the day longer than to change a diaper, because being flat on his back made it worse.  So we've been through medications, home-remedies, tests, visits to specialists, etc.  Add in a 6-day hospital stay at 6-weeks for RSV, and we're pretty exhausted.  But he is a lot happier now.  I'll go more into the reflux in a different post, but overall, he is doing well now but still has lots of difficulty with sleep.  So if you are an exhausted new mom, I can relate! We love both our boys and are looking forward to the day when Eli grows out of his tummy issues and they are both able to play happily together and we can do fun stuff as a family.  I work part-time (very part-time right now).  So I am trying to figure out the balance of life in general with two kids, and am just starting to grasp that idea! Hope you enjoy our blog and feel like you're not alone out there dealing with little ones!