The Life of a MSPI and Reflux Mommy!

So as we round the corner from our journey of MSPI and reflux, I can't help but feel so grateful that we only had to live through 8 months of this!  Dawson's case in comparison to many families has been on the mild side of things.  I have met many women who have MSPI and reflux babies through a support group that I was invited to by an online friend.  It has been so nice to chat with women who could totally relate to what I was feeling and dealing with.  After hearing many of their stories, I decided that I would share some on my blog to show what these babies and mommies deal with on a daily basis.(Yes, I got their permission)

  As a first time mom, I had NO CLUE that these issues even really existed.  I was in NO WAY prepared for the trial and error process that went along with reflux and MSPI.  After being on the MSPI diet for 7 months I can say it was beyond draining on me physically and emotionally.  Not only was the diet frustrating, but knowing my milk fat wasn't enough to hold my baby was so sad for me!  Reflux meds weren't too terrible for our situation.  We really only had to try two different medications to get under control and for that I am super grateful! Dawson is finally being weaned off of his medicine and seems to be taking to dairy and soy fine so far.  I could not be happier that this phase of his life is over.  I am sad that many months of his infancy was spent in frustration of "what if I ate dairy"..."is he refluxing?"...."why won't he eat?"...."why does his tummy ALWAYS hurt?"... Hopefully this post will help someone somewhere!  I wish that I had been educated on MSPI and Reflux before Dawson was born so that I would have known what was going on before questioning myself as a mom and questioning my baby! 



“During the third week Millie began to show a lot of frustration. She’d lose the latch, squirm, cry, get frustrated…you name it, she did it. It seemed like she just wanted nothing to do with feeding. I decided it was time to pump. She took to bottles very easily but as a result she became SOOOOO GASSY. And, by gassy I mean like so much air in her belly that she would scream. She screamed so hard that it would send shivers down your spine. I kept pumping and bottle feeding and the cycle would repeat. My day basically was: Feed, burp, baby scream for an hour, feed, burp, baby scream for an hour…
Throw in some barf and there you have it, my life.  You get it, right? Baby screams after feeds, etc.? Possible milk allergy. Avoid dairy.
Possible reflux. Get meds …(.Turns out a tongue tie can cause all of these issues as it did in Millie)

I am trying to move past them although I can’t help but feel robbed. I feel robbed of the first three very precious months of bonding I was supposed to share with my Millie. I feel like my mommy gut told me something was really wrong but my process oriented brain and my trust in medical professionals lead me to go against what my gut was telling me. I feel like breastfeeding wasn’t successful because of this and had it been caught sooner I wouldn’t have held onto the mommy guilt I still have.

I hope in reading this, whether you’re advocating for yourself, a friend, a family member, or your child, that you push and push and push until you feel like you can’t push anymore. Then, take a deep breath and push MORE!”   -M. Sleeper

“So after what seemed like 2 weeks of non-stop screaming I finally took my little man to the doctor.
 "Well Joanna, from what you are describing it sounds like he has acid reflux!" I thought, well what the heck is acid reflux?
Made me think of the Flux Capacitor from the movie Back To The Future. The doctor prescribed some Zantac and sent me on my way!
No instructions, no information, and said "Good Luck". Luck ? What the heck do I need luck for?

Well little did I know my world was about to turn upside down!
I researched and did my own FBI type investigating to find out how to "fix" him.
What seemed like months of trialing new medication, a new pediatrician, and even seeing a GI specialist, (who is NOT helpful at all) we are finally settling in to our "new normal".
 He may not be perfect, but he is perfect to me!”

-J. Teft

                “I have plenty of experience with MSPI children. My first three girls all had varying levels of the MSPI. My fourth little girl had MSPI, but then started projectile vomiting. I was introduced to acid reflux. Luckily she was controlled with Prevacid. Once she started solids we finally understood the extent of her protein intolerances. After months of stress, screaming, crying, and worry we finally had our daughter’s diet figured out. She is milk, gluten, and rice intolerant. She was 16 months when we found the right diet, it took until she was 2 for her to not need Prevacid anymore.

                We were blessed with our fifth child, first boy, in the summer of 2013. I knew he would be MSPI because of my other children. I started practicing the MSPI diet 3 months before he was born so that he wouldn’t be exposed to the protein during the last trimester in utero. Unfortunately at 2 weeks of age, milk started dripping out his nose when he was nursing, I knew I had a reflux baby. Then he had a gas fit causing him to scream for hours, he had reacted to some protein in my milk. The doctor put him on Prevacid immediately, and I started the total elimination diet. The total elimination diet consisted of turkey, potatoes, and pears, nothing else. This lasted for 3 weeks, baby continued to grunt and push at gas for hours every day and still had mucous in his poops. Meanwhile I was falling apart, I had no idea if I was hungry or if my stomach hurt from the limited diet. I lost 30 lbs in 3 weeks. Finally, baby stopped sleeping, no naps, no crying just staring. He was 5 weeks old! The doctor gave me a sample of the formula neocate, a special elemental formula that has only amino acids, no proteins for a baby to react. I nursed my baby and 15 minutes later decided to try the formula, he guzzled 2 ounces and immediately fell asleep. I cried! When I pumped my milk was so thin it didn’t even stick to the sides of the bottle. My baby was starving because my milk was too thin. It was best for him, and me, to move him to neocate. I nursed 4 babies for over a year, to move my last son to formula was devastating. Still makes me teary that I can’t nurse my baby boy. I just hope he knows that I love him so much, that I stopped nursing for him.  

                Unfortunately his reflux had just started to rear its ugly head. He began going stiff in my arms, and then he would stop breathing, when I jerked him up he would choke, sputter and scream. The doctor was alarmed; his meds were changed to Prilosec. He would have these episodes multiple times a week, most often on the Prilosec itself. He would choke on his bottle and his own spit up at almost every feeding. The meds were increased several times. Finally, the doctor ordered an upper gi to make sure there was nothing else going on. It came back clear. He was around 4 months when we moved back to Prevacid.

                He is now 8 months old. It has been over 3 weeks since he was able to finish a 4 oz bottle awake. We have learned how to feed him while he is sleeping, to get the right nutrients in him. He has learned to refuse solids and his bottle to avoid the reflux burn. His food refusal is getting stronger and coming to a head. Now our plan is a strong med to coat his throat and protect it while it heals from the acid burning it. Hopefully this will eliminate the pain associated with eating and he will be willing to eat again. The doctors think that my baby’s throat is so burnt from the acid that he won’t eat, my baby!, my poor baby! We are hoping it is that or it is behavioral, he has learned that eating causes pain so he eats the minimum amount to avoid pain, this will be much harder to fix. Others things can be wrong but I won’t go there, for my sanity. His and our wild ride are not over, actually it is worse than ever. Luckily I do know there is an end but the ride is so horrific all I can think about is getting off! I pray for the end soon. “

-M. Waite

These are only a few stories of MANY!  If you are pregnant or have an infant that is struggling with any of these issues...know that it may be more than "COLIC".  Also, know that your baby isn't just "cranky" and that they really cannot help the way they are feeling.  I know for me I would get so frustrated at first thinking I had a "fussy" baby.  Once we figured out the meds and diet...he became my sweet Dawson!  Hang in there MSPI /Reflux mommies!!!

8 Months Old

How old? 8 Months
Total Weight:  20.5 lbs.

Length: 29”
Eating:  Bottle, Veggies, Fruit  and Puffs! 
Sleep: Napping like a champ twice a day.  Sleeping a solid 10 hours the last 5 nights! YAY DAWSON!!
Fun Facts:  He loves to pull up and walk around the crib while growling or squealing
New Developments:  Dawson has started saying “momma” or his version of   “MA…muh”  He is so close to crawling! 

I really am beginning to get so sad that in just 4 short months my baby boy will be turning ONE year old!!!  Where is this time going???  Dawson is so full of life already at 8 months old!  He is so silly and never stops smiling!  As you can see it was very hard to get a good picture this month!  He is learning to crawl so he will not sit still for more than 2 seconds.  Lately, he has discovered that if he gets Phoebes toy she will run over and play with him.  This boy LOVES his dog!  I think a dog bone is the best crawl training!  He will get so frustrated every time she runs away with the bone....so frustrated that he will army crawl all the way across the living room only for her to run away again!  Hey!  He is learning fast that way! 

A little update on his GI situation.  We are currently PRAISING GOD!  A couple of weeks ago we had our follow up with Dawson's GI doctor.  After seeing how well he was eating again, and how much weight he has gained we decided to start weaning him off of his medication and reintroducing dairy and soy.  So far he is doing so well.  He has spit up a touch more, but it doesn't seem to bother him.  The doc said as long as he is a happy spitter and it isn't an excessive amount causing food aversion then there should be no need for medication!  Yay!  He is currently on Prevacid every 3rd day.  Next week we drop to every 4th and then come off the medication totally!  As far as adding the dairy and soy he has taken it like a champ!  I was SO nervous.  As anyone who slept over can attest, dairy and soy have been our enemy and made many months miserable!  If you read my blog a lot, you can remember when we were up every 30-45 minutes at night taking turns helping sooth a tummy ache!  So far he's been a touch gassier, but doesn't seem to be having any abdominal cramping.  I am so grateful that we did not have a long term allergy to deal with.  My heart truly goes out to the mommies and kids who endure MSPI for years!  Once he is off of the Prevacid and we see that he is truly tolerating dairy with no signs of intolerance or returning reflux, the doctor wants us to try feeding him yogurt.  He still has some issues going to the bathroom so we are still needing to give him the "P" fruits and juices for that, but we have learned how to manage it!  Thank you so much for the prayers for this matter.  We are so glad to see our little man happy and eating!

 

Speaking of eating....this little boy LOVES his solids!  I literally have to put a limit on him.  He will grunt and yell if he sees food around.  I am pretty sure he would eat until he made himself sick.  He loves almost every food he has tried. Zucchini didn't go over well, but everything else he has taken like a champ!  His favorite thing in the world though....PUFFS!  My goodness the boy would eat the whole jar!  He took a few days to figure out how to put them in his mouth, but once he learned I had to start limiting how many were on the tray because he couldn't shove them in his mouth fast enough!  After the food aversion we had a few months back it has made me so happy to have such a good eater! 

 

His favorite thing to do right now is walk around his crib!  I have never seen a baby fuss to be put IN the crib, but this is Dawson.  Even for naps my little booger will fuss to be laid down as soon as I walk in and turn on his sound machine.  He looks so proud as he pulls up and walks around.  It really does melt my heart every time he does it!  :) 

Probably my favorite pic this month!

 

Dawson's sleeping has been so much better since his tummy issues are starting to work out.  Of course, when we have a tooth coming through we hit some rough patches, but for the most part he is doing well.  He is an AWESOME napper these days!  Thank goodness for my sake.  We were having a bit of trouble a few weeks ago with him just waking and crying for a while....one friend suggested he may be cold since we had literally tried EVERYTHING else.  I went and bought a Halo sleepsack and ever since that night this child has been sleeping 10 hours straight!  WHAT?? He must take after mommy in the cold natured dept!  Grandma June also got him a fleece lovie that his paci hangs on and if he does wake he rubs it, puts a paci in ( he goes to sleep without a paci) if he needs it and drifts back off!  It has been a long sleep deprived 8 months and I am so grateful for every night that I get some solid sleep! 

 

Dawson Job,  thank you for being such a sweet boy!  I love watching you grow each month and am so glad I get to spend my days doing so !  You are my little world and I cannot thank God enough for giving you to me!  Happy 8 Months sweet boy!