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!

 

7 Months...WHAT?!?

How old? 7 Months
Total Weight:  Guessing around 19 lb or so

Length: 28” or more
Eating: Nursing or Bottle every 3.5-4 hours.  Also, we have added fruits and veggies!
Sleep: We are down to 2 naps a day !  WOOHOO and night sleep is steadily getting there….still 2 nightwakings that we are working on, but better than every hour!
Fun Facts:  He has developed a new “cheesy grin face”
New Developments:  A LOT!  2 new teeth, somewhat pulling up on things, and attempting to crawl.


                                                
Well... I cannot believe yet another month has passed us by and my baby is just growing up waaaay too fast!  He is such a chunker these days and becoming so interactive with everyone around.  Lately he has gotten some mommyitis and started fussing everytime mommy turns around to leave or go do a chore.  It can be frustrating when I need to do a lot, but then I love the fact that he loves me so much that some days it melts my heart and mommy just has to stop and cuddle her boy!  This month Dawson has gotten his first 2 teeth!  He is so cute shining those little chompers at me!  The first tooth wasn't so bad coming in.  We had about 2 nights of crying and needing some soothing and then it was over.  This second tooth has been quite a different story!  We've had snotty nose, upset tummy, and clingy cranky baby during the daytime (so not like my Dawson).  His nights have been better with this tooth then the last and he has settled much easier with a little orajel and cuddle from mommy.  I am already dreading the day he starts getting molars!  That is probably our biggest event that has been going on with Dawson.

Dawson seems to be turning the corner in the tummy department.  I really feel that after his next appointment this month we may actually start moving toward a more normal diet and reducing his acid medication.  I am really hoping that I can get back to eating normal foods again and that Dawson can be pain free and medication free! 

I mean really....this smile melts me every time!  I cannot imagine what life was like before Dawson got here and I am so glad God chose me to be his Mommy!  He brightens up so many days and truly is such a loveable baby!

Last but not least...this 7 month old LOVES his bath time!  We give him a nightly bath/playtime before bed, and I am pretty sure this may be his favorite thing he gets to do all day.  I couldn't resist sharing my cutie patootie view! 

 

Dawson, you bring me so much joy each day and every month that passes I fall more in love with you!  Until next month!

Soapbox Thursday!

You guessed it!  The famous Duck Dynasty controversy!  I just had to chime in after watching the "Today Show" and their opinion on this!  So, if you haven't heard, Phil Robertson has been suspended from the show Duck Dynasty (his show) indefinitely!  During an interview with GQ magazine Phil commented on homosexuality and how it was a sin.  Now, maybe the way he phrased it was a bit crude, but that is a Christian redneck and his firm belief!  Basically, he stated that homosexuality is a perverse sin.  Here is the link to the article and the words used by Phil and  A& E's response.  Now I am not going to get into the homosexuality debate, but I have to say, the way his freedom of speech is being attacked is down right sad! 

I just love how the whole backing of his suspension is his lack of "tolerance".  Ironically, the definition of tolerance is : the ability or willingness to tolerate something, in particular the existence of opinions or behavior that one does not necessarily agree with. Now, I don't think Phil isn't tolerant of homosexuality.  He stands firm in HIS belief that it is a sin, but he also stated that he has no disrespect and would never treat a homosexual person with disrespect.  Now, lets look at who isn't being tolerant!  A&E is in no way being tolerant!  That is Phil Robertson's right and opinion that they do not agree with, and by taking him off the network for his personal opinion they are not being tolerant of his Christian beliefs.  You see, this is how it always works for Christians, they simply state their view on a controversial topic and WOW all of the sudden people are shocked at the "lack of tolerance" and the person is verbally persecuted for standing firm on their belief.  BUT...if someone ridicules a Christian for believing that something is a sin...or a homosexual person criticizes a Christian calling them hateful...it is ok!  I'd definitely say something is wrong with this picture!  It seems that everything BUT Christianity is tolerated in today's society.  We are going to take a good man off of TV because he stands for what he believes in, but we can let Miley Cyrus walk around basically nude for our children to look up to, A&E can put Bonnie and Clyde on a platform to watch and make it look "cool" to rob and kill, we can pretty much make fun of Christians on any TV show and it is totally acceptable and "tolerant".  (Rolling my eyes)

This isn't just modern day problem...it started in the Bible...Christian's have always been and will continue to be persecuted for their beliefs.  Am I talking of physical harm? NO, but religious freedom of speech is being stripped away! The Bible has many verses speaking of this problem.

2 Timothy 3:12 - Yea, and all that will live godly in Christ Jesus shall suffer persecution

John 15:18 - If the world hate you, ye know that it hated me before [it hated] you.

1 Peter 3:16 - Having a good conscience; that, whereas they speak evil of you, as of evildoers, they may be ashamed that falsely accuse your good conversation in Christ.

1 Peter 3:17 - For [it is] better, if the will of God be so, that ye suffer for well doing, than for evil doing.

Luke 6:22 - Blessed are ye, when men shall hate you, and when they shall separate you [from their company], and shall reproach [you], and cast out your name as evil, for the Son of man's sake.

1 Peter 3:14 - But and if ye suffer for righteousness' sake, happy [are ye]: and be not afraid of their terror, neither be troubled;

The list could go on and on, but I will stop there because that is enough to see what Christ was talking about!  It is such a shame that the world is so shocked that a Christian would stand for their belief.  But should we really have expected them to be OK with calling sin what it is?  NO, that is why people despise Christianity and persecute Christians.  Jesus said it would happen years ago, and guess what it is still happening!  In my opinion, it is just another piece of solid evidence that the Bible is true!  So to the Robertson family I commend you for standing on truth!  The media may use it as a platform for LGBT support, they may use it to talk about how Christians are not tolerant, but they just caused the Christian community to be even more supportive of the family! 

HO, HO, HO....I'm 6 Months Old!

How old? 6 Months
Total Weight:  18 lb. 30z

Length: 28”
Eating: Nursing or Bottle every 3.5-4 hours.  
Sleep: Napping 3 times a day (2 hours, 1.5 hours, and 45 minutes) 

Night sleep is getting better!
Fun Facts:  Dawson has found his high pitch squealing voice and loves using it!
New Developments:  Pretty much sitting up unassisted with a few falls here and there.

 

Dawson,

 

I cannot believe you are halfway to being a year old!  You are growing up entirely too fast and it makes me sad!  You have become quite the little ham and don't mind flashing that sweet smile at any person who asks for it.  You are so playful and constantly bouncing and squealing during your wake time.  Lately you have started to be quite clingy to Mommy.  You have decided that if I turn my back to walk away that maybe if you scream loud enough and start crying that Mommy will scoop you up and carry you everywhere.  Some days I give in and others you just have to learn.  I thank God for giving me such a fun, loving and playful little boy.  I am sure you will keep me on  my toes once you go mobile!  You have started noticing when Daddy gets home from work and no matter how tired you are you perk right up and start squealing and smiling when you see him get home....it truly melts my heart!  Your favorite things this months are still...Mickey Mouse...apparently Mommy :) ...Daddy coming home...drinking out of a big boy cup thanks to Papa Jay...jumping in your jumparoo and sitting up! We love you more each day and cannot wait to watch you grow!

Love,

Mommy and Daddy

 

who..me?

Well hey there cutie!

 

MERRY CHRISTMAS!

 

 

 

What We Have Going On.... All things GI!

As many of you know Dawson recently visited a GI specialist from the children's hospital in Charlotte.  I never posted anything really about the visit or results...so I figured today would be a great day to catch up on some blogging before I reveal cutie patooties 6 month blog photos! 

Thank the Lord Dawson does not have any serious GI problems and compared to many parents around the world his issues are so small in comparison to several babies!  But none the less...anytime your child is struggling it is hard on you as a parent no matter how big or small the issue! 

It all started when Dawson was 3 weeks old...He started having "colic" screaming fits at and after every feeding!  My mommy gut told me it was all food related so I called the doctor 100 times it seems.  His initial diagnosis was GERD...or gastro esophageal reflux disorder.  He was prescribed axid to take twice a day.  It helped during feedings but he was still in much GI distress 1-2 hours after feedings.  He would wake mid nap screaming and not stop for hours.  It was pitiful.  After calling the doc we decided he had a "milk" allergy...not my milk but cows milk.  I did a strict dairy free diet and it worked wonders.  Dawson started being my sweet happy baby and less screaming.  Although his symptoms were tremendously better...he never ever seemed to just have a "settled" stomach.  Up until his GI appointment we have dealt with multiple night wakings from terrible gas and just writhing in the crib with tummy cramping.  At first I thought maybe I needed to be more careful in my food selections... (sugar, veggies, fruit etc) but no matter how bland I was eating, or so I thought, he still had gas...not just baby gas that comes out....I'm talking loud...wow that had to hurt....gas!  We were living on 1-2 hour sleep increments at a time and even a few nights of 30 minute stretches a time.  Not only did this become a terrible problem, but Dawson started refusing to eat more than 2 oz. at a time....and nursing was just not happening!  He would arch his back and just fuss after about 2 oz. every bottle....and if I dare tried nursing he would lunge backward and fuss!  So for several weeks this stressed me out and finally I called and said that his reflux meds weren't working or something else is wrong.  The pediatrician ruled out ear infection and then decided for us to see a specialist. 

At the appointment we talked over everything we were experiencing and the GI discussed all of the "diagnosis" that his peds had made from reflux to colic to just plain fussy.  After telling the doctor all of Dawson's symptoms he decided that the reflux had definitely flared up and we were in need of a PPI ( proton pump inhibitor) to reduce the acid in his stomach.  He was put on Prevacid for the next couple of months to see how things go.  So far I think it is working! 

The other problem Dawson was having was waking from severe gas and sometimes not eating due to irregular bowel movements.  I told the GI that we had been milk/dairy free for months and I didn't know what else to do.  He said that most babies who have a milk protein intolerance also have a soy protein intolerance and that most likely his diagnosis should be MSPI or milk soy protein intolerance.

What is MSPI?Milk soy protein intolerance (MSPI) is a temporary inability to digest the proteins found in cow’s milk and soy products.  MSPI is different from a traditional food allergy.  You may also see it referred to as food protein-induced colitis or cow’s milk protein intolerance (CMPI).  It may be related to other diagnoses, including eosinophilic gastroenteritis/ esophagitis, or allergic colitis.

Due to this new diagnosis, I have once again changed my diet to eliminate soy products also.  The doctor is very hopeful that he will be able to digest these proteins within the next 3 months or so.  He said that due to Dawsons weight and size he will clearly outgrow this by 12 months and be drinking cows milk! HALLELUJAH!  I know how hard it is to feed myself and I truly sympathize for the families who have children who never outgrow the allergy.  I had never heard of this before in my life!  I can definitely say that having to go through the trial and error and elimination diets has been a truly stressful time.  I am glad that we FINALLY have some answers! 

Since the appointment Dawson has been taking Prevacid each morning and we are also giving him Gerber Soothe colic drops in his evening bottle.  The GI doc suggested this to help in aiding digestions since many babies with GI problems are missing certain digestive enzymes and bacterias.  I truly feel like the soy elimination along with the new medications are making a world of difference. 

My D.I.Y nursing/teething necklace

Well, as many of my friends and family know... When it comes to Dawson and all things baby I've become quite the homeopathic hippy!  My how children change us!  Now that Dawson is becoming more aware of his surroundings he seems to struggle focusing on the task at hand..... Nursing to be exact!  So with a little investigation on the ever so famous google... I found many mommies using nursing necklaces for baby to play with.  I looked on etsy and man... $15-$20a pop... No thanks! So off to Pinterest I ventured!  I found several tutorials and decided to give it a go!  I also found many moms making them for teething purposes., and since we are also in that stage I decided to make mine teething friendly as well! Dawson rides around in his ergo a lot so it's great to occupy him! 

I got the jersey knit fabric from my mother-in-law who did the sewing portion since I (a) don't own a sewing machine and (b) have never ever sewn!  Although,  I have a good mind to learn and sell these bad boys on etsy! 

So first I cut a 5" wide by 58" strip of fabric. We then folded it in half and sewed it shut along one edge forming a long tube. Then I turned it right side out and tied a knot where I wanted to start the heading.  I slid round unfinished wooden beads in and tied a knot after each bead.  Once I got enough I cut both sides into 3 strips and braided! Easy peasy!!! Dawson already has loved tugging and chewing on it and we've finally had some successful nursing! I hope I can make the next one a little prettier... But I'm pleased with this for my first attempt!