A Honeymoon from Acid Reflux

Many places talk about getting a honeymoon for a baby when they go on a new treatment for acid reflux.  Well, Junior has been amazing these past week dealing with his recovery.  He’s on super expensive fancy formula and taking heartburn medicine twice a day.  (Heartburn medicine at 6 weeks is a sad thing.) 

It’s amazing how quickly you forget all the emotions that you dealt with during the worst of times of his illness and feeling bad.  Well, last night we got a quick dose of reality as Junior had his acid reflux come roaring back with a vengeance.  It was bad.  The blood curdling screams.  The arched back.  The “crying so hard I don’t have time to catch a breath” cry.  The inability for us to settle him down.  And with each of these things, a flood of emotions for my wife and I as we remembered all of the feelings and fears that had slowly dwindled away over the past 10 days. 

We just hope and pray that Sunday night wasn’t the start of the end of the honeymoon period.  We pray that his good times will far outnumber his bad.  This is supposed to be a rollercoaster, with a bad day possible, so it’s not for sure… However, we’re just praying that God is going to continue to heal him and make him better.

The Most Expensive Stuff On Earth?

As part of the treatment (or whatever the word would be in this case) for Jack’s Milk Protien Intolerance, we put him on a formula called Neocate.  I put a large amount of the credit for Jack having some Happy Baby time to this formula.  You’ve never heard of Neocate you say?  Well, not many kids are on it.  Most can go to some version of Enfamil or Similac for the intolerance stuff.  Some though need to go a step further and that is Neocate.

Here are a few things about Neocate--

1) It’s expensive.  Here’s a comparison:

Advance Infant Formula with Iron, 12.9 oz can makes 96 Fluid Ounces $14.99

Alimentum Hypoallergenic Formula, 16 oz Can makes 115 Fluid Ounces$27.90

Neocate Infant Formula 14 Oz Powder$40 on the internet ($70 in the drugstore)

Well, Stunning and I got one thing of the Neocate from the doctor.  All of a sudden, we realized we were running insanely low and this isn’t something you can run to the store to get.  You have to get it from a drugstore (there’s only one in all of San Antonio that carries it in stock and it’s $70 there) or from the internet.  We realized this on Friday, so had to get it delivered on Saturday and had to buy it in a pack of four.  Grand total for four cans of formula?

$169.00

We went from breastfeeding, which would save us thousands to the most expensive formula known to man.  I’m thinking about getting a side job at McDonald’s.

So… Is This What It’s Like?

This weekend we had a bit of a breakthrough.  We had a happy baby!  Friday night was amazing.  His feedings were like a gift from God.  He was fussy on Saturday, but not the definition of fussy Stunning and I have attached to the word.  Take a look at the differences:

From Websters:

Fussy: \ˈfə-sē\  adjective  1 : easily upset : irritable

Our Definition:

Fussy: \ˈfə-sē\  adjective  1 : HOLY CRAP HE WILL NOT STOP SCREAMING. PLEASE DON’T BE IN PAIN ANYMORE.  I AM SO SORRY YOU HAVE TO GO THROUGH THIS.

I think you might be able to see a bit of a difference.  On Saturday, Junior was fussy as in Webster’s definition.  There was no pain.  It was amazing.

We had the incredible sense that this is what most parents experience.  We must say, it’s pretty awesome.  However, there’s a part of me that it makes me really sad.  Not sad that he’s better, but he turned six weeks on Sunday and we’ve really only have experienced a couple days of this.  The typical feelings and experience most people have when they bring their first child onto this Earth was stolen from us by this terrible disorder.  We’re so happy to experience just a few days. 

Please pray that this continues.  We know there’s a chance it will revert (people call it the honeymoon when they’re put on new medications/formula and see improvements before reverting), but we are so blessed that have experienced just a few days of bliss.  We would like to experience a few more though. 

Any new parents knows that there’s a lot of people that will scare the hell out of you.  Birthing classes find ways to scare you.  Other parents find ways to scare you.  The internet finds a million ways to scare you.  Basically, it all boils down to the fact that if you do something (or not do something) it will somehow mean an increase chance that your baby will die. 

It’s very difficult to be a parent knowing that most of the decisions you face will lead to this increased risk.  Here are a couple areas that they scare the hell out of…

SIDS – Sudden Infant Death Syndrome:

This is a serious issue and because of great education to the masses, the rate of SIDS has decreased drastically.  However, there’s basically research showing that you can’t do anything without increasing the risk.  Stunning was reading through some information about acid reflux babies in information provided to her by a lactation specialist.  Well, reflux babies have a higher rate of SIDS.  WHY WOULD YOU HAVE THIS IN THERE?!?  People are reading this information because their kids have this and there’s little that can be done about it, but thanks for making us think about the fact that SIDS can happen because of it. 

Then there’s people on the internet.  We were researching the idea of supplementing with formula at night and breastfeeding during the day.  We ran across a Yahoo! Answers where someone said a baby would sleep better at night with formula since they don’t get as hungry as fast.  This was a response:

Babies aren't supposed to sleep through the night, this increases risk of SIDS. Definitely do not let them sleep more than five hours at a time.

Thanks.  (By the way, the formula made him sleep no longer at night.)

Breastfeeding versus Formula:

I’m with people that breastfeeding is awesome.  It makes sense that the thing babies need most would be in the milk refined for thousands and thousands of years.  However, sometimes, such as our case, it doesn’t work…  and people need to use formula.  WOW!  Search the internet to see what moms have to say about this.  Basically, if you give formula… your baby will be ADHD, dumb, unlikely to succeed in life, your bad parents for not giving breastmilk, your lazy, your baby will grow up to wear his hat backwards, and anything else that could go wrong will go wrong. 

There are other areas, like the carseat, germs, etc that have the same fear mongering associated with it.  It really makes parenting more difficult as you might imagine. So far though, I’m happy to report Junior is still alive.

What’s Wrong With Junior?

From the wife today:

This is a long post—I am hesitant to write it because we have so many friends who are trying to have/expecting babies. I don’t want to scare anyone into thinking that parenthood is dreadful. So I will say that what we are going through, although not terribly uncommon, is not normal. My sister and brother both have babies who are happy and rarely fussy and sleep for hours at a time.

I didn’t have many expectations for motherhood but the one that I did have was that I would breastfeed for as long as possible (hoping to meet that 1 year mark). John and I attended the nursing 101 class and had many discussions about how he could encourage me to keep nursing even when I started to think I didn’t want to anymore. I think that we thought the hardest thing about nursing would be the “inconvenience” of it. Wrong.

First, for some reason, I developed a strange side effect of nursing: I grew increasingly nauseous every time Junior ate. I’m talking first trimester, I-might-puke-all-over-this-kid sick. That lasted about 2 weeks and then it died off. On top of that, Junior would only latch every once in awhile. We had to give him bottles half the time because he simply wouldn’t latch. Finally, early last week, we had a good rhythm: he finally started latching but he would nurse for a full hour and then would want to eat again in an hour or less. Then he began to scream bloody murder after every nursing session. A lactation specialist told me that he was just frustrated because bottles are so much faster and he was frustrated that he couldn’t get that same fast feeding from me. Of course, I thought this was ridiculous because if that were the case, wouldn’t he scream at the beginning of the feeding? After a few days of this, we started giving him a bottle when he would start crying. Luckily, I had a bit of a supply built up of pumped milk so we were good to go. Except for the fact that the kiddo usually drank 3 oz even AFTER a 60 minute feeding. We decided that something must be wrong with my supply. I went back to the lactation consultant and we found out that Junior was only getting 1 oz from me. Considering that he could down a 4 oz bottle with no problems, we were beginning to get concerned that my milk supply was low. After comparing what I was pumping to what is normal, I realized that I have a horribly low supply. Enter fenugreek and pancake smell. Unfortunately, although I did begin smelling like maple syrup, my supply remained the same. I can’t tell you how sad this all made me—I had convinced myself that I would nurse for a year and now I couldn’t even provide my son with 1/4 of what he needed at each feeding. We decided that I would stop nursing and only pump—we’d give Junior my milk from bottles during the day and formula at night (we just didn’t have enough of my milk to go without formula). It was simply too hard to nurse for 60 minutes, give a bottle, settle Junior down, and then pump to get any excess that Junior had missed (and to get a supply up for the bottles we now had to feed him). By the time all that was over, I only had about 45 minutes before Junior was ready to eat again. I was going crazy. I should say that I think it’s a shame that people make women feel so guilty about their decisions regarding nursing. There are people that are so pro-breastmilk that they forget that there is a human behind those boobs who needs sleep and sanity. I was not going to be a good mom to Junior if I kept that up. But everything I read and almost every “professional” I talked to made me feel like I was selfish if I stopped nursing, even though I couldn’t satiate Junior if I continued. Anyway, we made our decision and that first day was great! I gave Junior bottles when he got hungry and then pumped right away. He was way more chill because he didn’t spend all that time screaming out of frustration that he wasn’t getting enough food. John and I thought we’d turned a corner and that we would FINALLY have a happy baby. Unfortunately, we were wrong.

The last week or so, Junior has started to get hysterical after every feeding—even from the bottle (which he normally loves). It got worse and worse to the point that he would scream bloody murder during a feeding and for about an hour afterward. He was/is absolutely inconsolable. He is so hungry but he will take a few sips and then scream and scream and scream. So he wasn’t eating as much but then he’d wake up an hour later starving. And we’d go through it again. We finally got in to see the pediatrician and found out the news: our sweet little boy has both acid reflux and a milk protein allergy. Basically, he has such bad acid that his throat is totally raw. So every time he eats, it upsets that already irritated esophagus and he screams out of pain. But, of course, he’s still hungry so he has to basically suck it up and eat anyway—despite the fact that he is in agony. So when I thought that he was mad at not getting enough milk from me, he was actually in pain because his stomach had begun sending up all that acid to his esophagus. So low milk supply + acid reflux = super unhappy Junior.

It is, by far, the hardest thing I’ve ever had to deal with. It is impossible to watch him in such pain. He screams to the point where no noise comes out—one of those horrible, guttural cries. Add to that the fact that there is NOTHING we can do to calm him down or make him feel better. Mix in the lack of sleep because he truly won’t doze for long enough for us to fall asleep too. We usually get an hour of sleep and then he’s up for an hour and a half screaming. Rinse and repeat. It’s horrible. But at least now we have a diagnosis. The pediatrician prescribed Zantac—it’s weird and sad giving my one month old prescription medication but we are praying that it will work. We also switched to a special (and freaking expensive!) formula that is supposed to neutralize acid in his stomach so it won’t come up to his throat. Finally, I have to cut out all milk and milk proteins from my diet so that it doesn’t pass to my milk (and thus to Junior). I didn’t think it would be that hard because it’s easy to avoid cheese, yogurt, etc. But I was wrong: milk proteins are in everything! Even the stuff where milk is removed still has the proteins left. We are so praying that this will all heal our little boy. The doctor said not to expect him to be better for about two weeks (TWO WEEKS?!?!?!) and we are sincerely asking for you to pray that it works. Today was his first full day on all the medicine, formula, etc. and there wasn’t much improvement. He went three feedings without screaming but then freaked out again (I am writing this post in the middle of the night after one of his scream fests). I really cannot tell you how much we’d appreciate your prayers. Thanks everyone!