Category Archives: GERD

The Uncomfortable Topic of – (gasp!) – Breastfeeding a Protein Intolerant Baby

Manimal BottlesAnyone who has known me for any number of years… ehem, weeks… OK, days… can tell you I struggle with the sin of a critical spirit. For example, when the hubs and I were first married, I had a big hissy fit because he scraped the bumper of our car on the road while backing out of a steep driveway. When he did this, I was not merciful and patient, and I was downright mean – over what? A twenty-year-old car that my coworkers called the “drug-dealer car” (because it was that ugly – and cops apparently agreed, because I got pulled over all the time – even when I wasn’t breaking any laws. Ugly-car profiling, I tell ya!). Anyway, the very next day, I drove the same said car into our other car. Yup. And The Hubs was sitting right next to me in the passengers seat. And guess who was very patient and merciful. Yup, The Hubs.

And that’s how God often deals with my critical spirit. By putting me in the same situation that I had at one time judged others…

So, you’ve probably figured it out, but I used to judge mothers who had decided to stop breastfeeding – c’mon – didn’t they care about their babies to give them the very best?! I may not have said anything to their face, but I sure questioned women when they chose to formula feed – even when they had good reasons like their milk supply was low, or their baby never latched correctly. And like the old saying goes, you are the best parent you will ever be before you have children.

I was the best breast-feeder I ever was before I had a baby.

Before having Lil Z, I had researched breastfeeding, and had talked to a lot of other moms who had done it. I was excited for it. I knew it was the best thing for my baby, and I was not going to be one of those mom’s who didn’t care about my baby enough to do it (insert critical, haughty-sounding voice here).

But then Lil Z arrived, and I actually put all my research into practice. And, it didn’t go so well. Actually, that’s an understatement. Don’t listen to what the boob Nazi’s say – breastfeeding hurts. It really, really hurts, at least in the beginning. Even when you do it right – it can hurt. And that’s what happened to me.

I worked with a lovely lactation consultant, Marjie, several times, but it never stopped hurting. After several sessions, we established he was “doing” it right – latch, suck, and so on. There shouldn’t have been that much pain – but there was. Marjie suggested I see my doctor about checking for thrush, because even though I didn’t exhibit any physical signs of thrush, I had described the pain of thrush (i.e. it felt like battery acid had been poured on my… ah, chest).

So, I saw the nurse practitioner at my OBGYN’s because my doctor was on vacation. She glanced at my chest and said I didn’t have thrush, and I should just stop breastfeeding. But I was too embarrassed to tell her that I couldn’t afford formula because I was no longer working (and this was before we knew he would need a hypoallergenic formula!). I had to make this breastfeeding thing work.

So I went back to Marjie, who was livid with the nurse practitioner. Marjie advised me to call my doctor and explain the situation. A doctor in the practice prescribed a topical powder (my doc was still on vacation, apparently), which helped ease the pain and make nursing tolerable. Z went on an anti-fungal medicine also. But the pain, although lessened, continued. It persisted the entire time we breastfed – 14 months (I would have quit exactly at 12 months, but the kid kept waking at night, and wouldn’t fall back asleep no longer how long I ignored him – but that is a story for another time).

By the time Z was four or five months, I was ready to call my insurance company, or the closest WIC clinic to see if I qualified for formula assistance. But I kept reading about how some PI babies never tolerate any formula, and it scared me – Lil Z was so sensitive, that I’m fairly certain he would have bounced from formula to formula in our quest to find one that “worked.”

Saying I hated breastfeeding is putting it mildly. I loathed it. But I was trapped. So Lil Z and I continued. It was rarely sweet bonding time like I’d heard about from so many women. It was uncomfortable and painful – made even more depressing by the fact that I couldn’t eat the things I really wanted.

So by the time I had worked up the courage to even have a second child, I dreaded breastfeeding so much, that I considered putting Manimal on formula right out of the gate. But I knew that was illogical. I had to at least try. Because… well, I understood breastmilk was the best food for a baby, so who was I to rob him of that if we could make a go of it? And what if he was PI, just like Lil Z had been, and no formula worked for him?

But this time… it worked. Well, other than the fact that I had to modify my diet again. But now I knew what I was doing. I could eat sorbet if I wanted ice cream, and Enjoy Life’s chocolate when I wanted a Hershey Bar. Don’t get me wrong. I was thrown into the PIT of despair when I realized that Manimal was protein intolerant, just like Z was. But, once I got over this, and the “mourning” of my half-and-half in my coffee (it’s weird, but that is what I really missed the most), I realized that Manimal and I were having the sweet bonding moments I had never experienced with Lil Z. It wasn’t as painful, and it was much more… natural.

At eight months, to my regret, Manimal went completely on formula. I had gone back to work full-time when he was two months, but due to my weird work schedule (which resulted in random pumping and missed meals) my milk began to dry up, and I just couldn’t keep up with him. After trying to increase my supply with extra pumpings and fenugreek, Manimal resorted to biting (hard!) and it was time to transition to formula. Luckily for us, Manimal was much less sensitive than his older brother had been, and he tolerated Nutramagin.

I don’t regret continuing to breastfeed Z, even though I hated it more than a lot of things I’ve ever had to do. I know it helped him, and and he rarely was sick (other than the whole, horrible acid reflux, PI thing!). But would I breastfeed again through pain like that? Probably not…

I do regret not being able to breastfeed Manimal longer. He is a sweet baby who loves to snuggle. Nursing him was really precious bonding time, and sadly, I feel like I missed out on some sweet moments those last few months.

And I guess what I am saying to you is that breastfeeding might be really, really tough right now, especially if you can’t eat the things you want, or it hurts. And I totally get it if you want to quit – I completely understand if you do. I truly do. But if you do decide to keep breastfeeding, it may be tough, but you won’t regret it in the end. And if you decide that you are quitting, just know that I certainly won’t judge or scold you for choosing formula – because sometimes life just is what it is. And nursing a PI baby is very, very hard.

Here are some verses that helped me keep my sanity while dealing with Lil Z, his reflux and breastfeeding:

Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The Lord is my portion; therefore I will wait for him.” Lamentations 3:22-24

Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you. Deuteronomy 31:6

The Lord has an ultimate plan for you, your baby and your family. You simply need to ask and wait; and He will guide you in the right decision to continue or quit breastfeeding.

The Big Guns – Teaching Your Baby to Fall Asleep and Sleep Longer – Sleep Part III

Lil Z Swaddled

Lil Z after a nice, long sleep.

Have you read Part I and Part II of our sleep story? If not, you should check them out!

When Lil Z was brand new, I’d read Healthy Sleep Habits, Happy Child by Marc Weissbluth. His methods seemed mean, and I made the mistake of trying to “cry it out” when Lil Z was two weeks old. It was horrible and didn’t work because Lil Z was in the throes of undiagnosed protein intolerance and reflux pain. It was terrible, but we’ll save that for another post. Let’s just say, make doubly sure your baby is not sick or in pain when you “cry it out.” And a two-week old baby will only cry for a few minutes when they fall asleep. If they cry more than 15 or 20 minutes, I submit to you, there is something wrong. But I was too young and dumb in motherhood at the time to know that. Also, if your baby has lost the ability to fall asleep on his own, I suggest you gut it out, and wait ’til he is at least four months old to cry it out. At four months he can self-sooth.

Anyway, desperate times call for desperate measures, and me not sleeping for months on end had taken its toll. I was ready to try crying it out again. I was sick of being a “sleep prop.” I talked to my pediatrician, and with her OK, we decided to try “crying it out” again. We were dreading it, but knew it was necessary. We talked to our friends, Stephen and Erin (remember, the people with the magical babies?) to get their advice because they had cried it out with their first child when he was seven months old.

So we worked our way through what is now our normal “nap-time and nighttime routine.” We put Lil Z into his jammies and played with him in his room for a while. We read him stories and prayed for him. We turned off all the lights (no night lights til they are much older) and sang a couple of songs. Then we put him in his crib – tired, but awake.

It was so hard saying goodnight that first night. I can still see Lil Z’s cute little face smiling at us. He had no idea we were not coming back into his room until he was asleep. We shut the door, and we waited. One…two… three… and the began crying. It took all our will power not to go back in there. Mike and I had to continually talk each other out of “rescuing him.” And he cried. I turned the volume down on the baby monitor. I felt sick. I turned off the baby monitor so I wouldn’t see the blazing red lights flashing. And he cried some more. We turned up the TV volume to drown it out. And he cried some more. And some more. We turned down the volume of the TV to see if he was still crying. Yep, he was. He cried and cried… and cried.

Finally, blissful sleep came. Lil Z had cried for almost two hours. But according to our pediatrician, that was normal for a baby as old as ours. We crept into his room. He was fast asleep, and his legs were sticking out of the crib bars. He wasn’t stuck, that is just how he finally fell asleep. Adorable.

I feared Lil Z would wake 45 minutes later, which was the norm for him. But, for the first time in his life, he slept almost five hours. That isn’t that long for a six or seven-month-old baby, but for Lil Z, that was a major milestone. He woke up around midnight. I fed him and put him back in his crib to put himself back to sleep. He cried for only a minute or two before falling back asleep. It was pure, amazing, awesomeness.

The next morning, Lil Z awoke happy as a clam. He seemed refreshed and showed no sign of being through a trauma, which is what I felt I had gone through the night before.

The next night was a little better: he cried maybe an hour. By night three it was 45 minutes. After day four or five, he cried around 20 or 30 minutes. When it was all said and done, it took about two weeks to have a baby that I could put in his crib at bedtime and walk out the door with little or no crying.

Lil Z became an amazing sleeper. OK, that is not being fair. He became an amazing fall-asleeper.  Lil Z continued to wake up at least once a night until he was more than a year old, and he was never a great napper, but I will save that for another time. Bedtime became fairly easy for us because he knew the routine. We didn’t have to fight with him at bedtime like I hear other parents have to. He continued to wake up in the night a lot longer than “normal” babies, but looking back, I think it is because he was dehydrated from all the diarrhea that had (and often still does).

Does anyone have any sleep struggles or sleep stories they’d like to share? Feel free to leave a comment!

Magical Babies – What Sleep Should Look Like – Sleep Part II

Zeph baby sleep 2

After doing Harvey Karp’s 5s system, we would put Lil Z in the swing, car seat or bouncy seat to sleep. If we lay him down on his back, he would immediately wake up in pain.

When Lil Z was first born, I read, The Happiest Baby on the Block: The New Way to Calm Crying and Help Your Baby Sleep Longer by Harvey Karp, M.D. It had a lot of, well… weird ideas about how babies should really be in the the womb three or four months longer than they are. His reasoning is that they are fussy, like to sleep a lot and be swung, and they like calm, quiet, dark places – like in the womb. And newborns do like that, so I see where he is coming from.

However, I don’t think babies should be in the womb four months longer, and God doesn’t make mistakes (and Karp wasn’t probably saying that, exactly). Most normal newborns are fussy, in my opinion because they are in a transition period – c’mon, they just spent their entire lives in a cozy, warm environment, and they haven’t learned to self-soothe yet. It comes down to them not being able to suck their thumbs… or rub their hair, or whatever babies do to calm themselves down when they are upset, which they learn to do around month four. So I think God means for the first four months to be pure, awesome, bonding time with baby, because the parents are the ones who get to be the comforter.

With that said, this book’s techniques on calming a baby are a Godsend for parents with babies who are colicky and/or sick. We used this method and it worked every single time – unfortunately, it became the only way we could get Lil Z to sleep.

A fussy baby will immediately be calmed and pacified if you do the following things (at one time):

  • Swaddle – swaddle baby, including his arms (as long as he is younger than 3 or 4 months)
  • Shush – create rhythmic white noise. We ended up getting a noise machine and set it on the waterfall setting – loud.
  • Swing – Gently jiggle baby on his side so you get a “bobble head” effect. We also had a lot of luck by placing Lil Z in his car seat and bouncy seat swaddled and jiggling him fast.
  • Suck – Put a pacifier in baby’s mouth. When babies suck, natural calming chemicals are released in their brains.
  • Side – placing the baby on his I guess is easier on their tummies and digestion.

Like I said, this method is a Godsend for parents of a sick or colicky baby. Now, if you are one of the lucky ones who gets a baby who sleeps well and can put himself to sleep, do not use this method. Let me say this again. If you have a happy baby who doesn’t have colic or reflux, or isn’t sick, DON’T’ USE THIS METHOD. You will be creating a baby who is dependent upon you to be a sleep prop (more on sleep props later). You will regret it later when your baby can only fall asleep with your help, and needs you to put them back to sleep when they wake up randomly at night.

If you are a sleep-deprived mother who has an unhappy and constantly-crying baby, skip this part. You will want to stab something with a rusty fork.

Magical Babies – Happy newborns know how to sleep:

So, apparently, there are these magical babies I had only heard about, and I thought they were the stuff of myths and legends. These babies are born knowing how to put themselves to sleep. They don’t really cry that much, except for maybe a little bit in the evenings, or when they are hungry. I have some friends (Erin and Stephen) who seem to be blessed with these magical babies. They had their magical baby, “Little J” a few short weeks after I had Lil Z. One day, we were sitting in Erin’s living room, talking and showing off our newborns. Erin said she was going to put “Little J” down for a nap. And to my shock (and jealousy), she just set him down.

No bouncing. No singing. No 25-minute routine. Just. Set. Him. Down. Just like that. And what did “Little J” do? He fussed and cried for maybe two minutes and promptly — fell asleep.

And now I’ve come to find out, after the…horribleness that I went through with Lil Z: that is what sleep should look like for a healthy, non-reflux, non-sick newborn. Yeah. That’s right, listen parents of happy newborns or parents who are about to have a newborn: a newborn baby knows how to put himself to sleep. You don’t have to help him. Don’t rock him to sleep. Don’t walk around til he falls asleep. Don’t place him on your chest and rub his back until he is asleep (OK, you can do this once or twice when they are really new – it’s totally freakin’ awesome). Anyway, if you put your baby to sleep, you will un-teach your baby how to fall asleep on his own. And it only takes a couple of days to do this. So my recommendation, as a mother of two babies who “un-learned” how to fall asleep – let them fall asleep on their own as a newborn.

What sleep should look like for a healthy baby: Swaddle them if they are four months or younger, run through a loving routine (read a book, turn out the lights, sing and pray, tell them you love them) and lay them in their cribs tired, but awake. Shut the door, and walk away. Baby will fuss and cry for a little bit, but will soon fall asleep. In fact, all babies cry before they fall asleep. If you listen and get to know their cries, you will begin to recognize their “I’m falling asleep cry.” Then your little bundle will be out. Like a light… that is, if your baby is not in pain.

If your baby is in pain, there really is no solution for him until he is out of pain (and by pain I don’t mean a little gas. Any mother of a protein intolerant or extreme reflux baby knows what I mean). Get their reflux under control. Work with your pediatrician to get them on the right meds. If you are breastfeeding, completely avoid the foods that bother them, or find a formula that doesn’t irritate them. Once your baby is healthy and not in pain, you can finally TEACH your baby how to sleep (just make sure they are four months or older so they can self-soothe).

My baby is not in pain anymore – Why is he not sleeping?! So I’d finally gotten Lil Z’s reflux under control through my diet and his medicine. For the most part, he was very happy, but despite the fact that he was a million times better, he still wasn’t sleeping through the night. In fact, he was still waking every 45 minutes.

Well, shortly after I read The Happiest Baby on the Block: The New Way to Calm Crying and Help Your Baby Sleep Longer, I was told by a friend to read the Secrets of the Baby Whisperer: How to Calm, Connect, and Communicate with Your Baby, by Tracie Hogg. It sounded hokey, but I was desperate. Well, this woman knows her stuff. She is baby-understanding rock-star. Every new mother needs this book. Get it. It’s amazing. She discusses everything from getting babies on a routine, understanding their various cries, introducing solids, and so on. It is comprehensive, and well worth the money.

The only thing in her book that didn’t work for me was her methods on helping your child fall asleep (it probably works if you have a happy, healthy, non-PI, reflux baby, though). Hogg feels it is wrong to let a baby “cry it out” when you are trying help them to learn to sleep. Her method involves a lot of back patting and shushing. I really wanted this method to work, because I didn’t want to have to let my baby cry. Well, I tried it her way… for four straight weeks (actually eight, but the first four he was still in pain because I hadn’t figured out his protein intolerance issues yet). Her sleep method didn’t work. I had become exactly what Hogg warns against – being a sleep prop.

So, my husband and I, tired and exhausted, were at our wits end. Our baby was six months old, and I hadn’t slept more than three or four hours since he had been born. It was time to get out the big guns. More on that… tomorrow.

How the Heck Do I Make This Baby Sleep? – Sleep Part I

Liz Z baby sleep

This was the only way I could get Lil Z to Sleep in the beginning. I would swaddle him, pop a pacifier in his mouth, and jiggle him. He would immediately wake up if I set him on his back, so he slept either in a bouncy seat, car seat or swing.

When Lil Z was born he barely slept, and he woke a lot. He napped very little, and was constantly fussy. I figured that is what newborns did. The doctor diagnosed him with acid reflux and put him on medication. But the sleeplessness continued. For weeks. Then months. It was hell, I’m not gonna lie. To top it all off, when he was awake, he was fussy and crying. He wouldn’t let me set him down. I remember calling my husband and begging him to come home early from work, just so I could get a break. He wouldn’t of course, because he didn’t want to look like a bad employee.

I had to hold back the bile (and my fist) when I met mothers who said things like, “my baby slept through the night at five weeks.” Like they had something to do with it. To this day, I still kind of want to punch something when someone talks about how well their newborns sleep.

But I digress. I read every book under the sun. I scoured the internet. How the heck do I make this baby sleep?! I didn’t even care about having him sleep the whole night – I just

wanted a good 3 or 4 hour stretch. My baby was waking every 45 minutes – all day and all night long.

What I figured out is this: Lil Z has celiac disease and protein intolerance (e.g. he was clinically allergic to the foods I was eating and was getting them in my milk). Once I went on an elimination diet and removed the “offending foods” from my diet, his acid reflux got much better. Pretty much overnight. But the night waking continued and poor napping continued. It took a while before I figured out how to get him to fall asleep on his own.

Fussy Baby – What I Wish I Had Known in the Beginning

When Lil Z, my firstborn came along in 2008, he hit our family like a freight train. He cried all the time, arched his back constantly, rarely slept more than 45 minutes, and never let us put him down unless it was to be jiggled in a bouncy or car seat. His diagnosis was gastroesophageal reflux disease (GERD). But no matter how much medicine they gave him, we couldn’t make our baby comfortable, and he rarely slept more than 45 minutes at a time (it didn’t matter if it was day or night).

What we later learned was Lil Z is protein intolerant and has Celiac Disease. Here is advice I wish I had gotten when Lil Z was a baby:

Painful Reflux (GERD) is not necessarily a “mechanics issue”: I heard this so many times from my son’s doctors, but unfortunately, I took their word for it for more than five months after his birth. I was breastfeeding at the time, and he ingested proteins from the food I ate, which made his GERD unbearable. I wish I had tried an Elimination Diet from the start, and I would have discovered his reflux was greatly exacerbated from several of the foods I was eating. Once I eliminated the foods from my diet, his reflux was manageable with medicine. My second son, Manimal’s reflux was only painful if I ate an offending food.

Sometimes one reflux medication doesn’t work, while another one will (we had better luck with Prevacid rather than Zantac). One doctor told us several months after putting my son on Zantac, that Prevacid works faster than Zantac, but because it is so much more expensive, a lot of health insurance companies will not pay for Prevacid until Zantac has been tried.

Mylanta helped when a really bad acid reflux “episode” would hit. When Lil Z was going through an “episode” (i.e. he would scream and arch his back for hours) we gave our son Mylanta, per our pediatrician’s OK. She gave us the exact amount to give him based on his weight and age at the time. Check with your pediatrician before giving your child any medication.

Lil Z experiencing one of his frequent "episodes" with reflux.

Lil Z experiencing one of his frequent “episodes” with reflux.

Trust your intuition: There were days (and there still are) when I know my child ingested an offending food. Or did he? No, he definitely did… no wait. I think I am crazy — he couldn’t have. But he’s acting like he’s in so much pain, but… I was so careful!

Any mom with a food sensitive-child has had that exact conversation every time their child exhibits signs of ingesting a food they shouldn’t have. Trust your gut — I feel like a mom’s intuition is rarely wrong. And try to be patient with advice from mom’s who haven’t experienced what it is like to have a baby with protein intolerance and/or reflux. They are well-meaning, but they have no idea what you are going through. Is your baby crying longer before his nap? Is his cry sounding “grinding” and guttural, like his reflux is back? You know, maybe it was teething, as I often was told, but why did it always seem to happen on days he was around other kids who were eating fish crackers? Trust your gut, and ask God to help you recognize the times your baby is feeling sick or just getting old enough to manipulate you at bedtime. It is the worst feeling to make your baby cry himself to sleep to find out later when he has a mucousy stool he was reacting to something he ingested. But realize it happens. Don’t beat yourself up too much. Just love your baby and move on.

My own mother told me that it is good for a baby to cry. I plan on doing a more in-depth article on how I got my kids to sleep through the night, which involved “crying it out.” But it is never good for a sick or in pain baby to cry it out — ever. It’s cruel. So before doing this method, make doubly sure your baby is not suffering or sick.

Once you have had your baby comfortable for a few weeks, his sleeping habits may not improve on their own. This may be because your child has conditioned himself to wake frequently. Both my boys eventually learned to sleep through the night. Stay tuned for a future post on how I made this happen.

Why can’t your kid eat so many foods?

I get a little uncomfortable trying to explain why there are so many foods my son can’t eat. At this point in time we avoid eggs, nuts, dairy, soy, gluten, corn, and nitrates – these are foods that I know either for sure bother him, or I suspect bother him. He was tested for food allergies and Celiac disease (Celiac disease runs in my husband’s family) when he was around 7 months old. Little Z tested as “not allergic;” however, in the words of my son’s pediatrician, he is “clinically allergic.” I have latched onto the term “protein intolerant” because of the research I have done on allergies on my own (and I don’t mean intolerant to all proteins, just several).

Yes, this is a self-diagnosis, and I am sure it drives doctors everywhere nuts. But, if I had fully relied on the doctors, Little Z would have had surgery to tighten his esophagus due to uncontrollable and painful Gastro-Esophageal Reflux Disease (GERD) at 5 months. My son’s doctors have been wonderful, but it was either a mother’s instinct, or at least a mother’s absolute terror at the thought of having her baby undergo surgery, that caused me to try the Total Elimination Diet when he was 5 months old.

Our pediatrician finally referred us to a pediatric gastroenterologist, and we get to see him (or her) in early September of 2009. I am praying that we finally get some answers, and that Little Z’s “clinical allergies” are finally diagnosed – and that they are just that, and not symptoms of a more problematic underlying health issue.

This is a picture of my husband, Mike, holding Little Z
during one of his early “reflux episodes” as we used to call them.