Another reflux post

  I often wonder what I could have possibly done differently when I was pregnant... I think about what could have caused this horrible disease in my baby. I wish that things were different, that he didn't go through the pain of reflux. I know that if he didn't have reflux we would both sleep so much better... I have days where I don't really like my beautiful son, I love him, but I don't like him. Going out was always an anxious time for me... I had a really hard time leaving the house, and every time I did Jakob would cry all the way to town and all the way back... hated the car seat, and would throw up all over himself. I found that I needed to take 5 changes of clothing and 5 receiving blankets with me for a 2 hour outing... I had an average of three loads of laundry to do every day... half of it would be my clothing that he threw up all over, the other half would be his own clothing and receiving blankets.

  A good day for us is having maybe 3-5 hours sleep... and I only have to have him in my arms or on my hip 75% of the time. Laying my son down for tummy time just simply didn't and does not happen, or at least not often. laying him down means that the digestive acids in his stomach as well as anything he may have eaten will be coming up his throat. I have had many people recommend things to me to help his reflux, I have also cut out a lot of foods in my diet that cause his reflux to act up. The first idea was "switch him to formula, its thicker and will help him sleep better" .... uh what?! There are a few problems with this suggestion, first of all, formula takes longer to digest, it will not sit in a tummy that has a wide open valve, and seeing as how it will take longer to digest that means longer periods of time where he is choking and gagging on it...secondly, formula is full of chemicals and sugars the baby cannot use, and can potentially cause not only more digestive upset, and colic, but allergies, and increase babies risk of childhood cancers. Another recommendation was Avacado... Avacado can be mashed and fed straight to baby, no cooking required, plus it has live enzymes that help the tummy to digest it, it also being a heavier food does not reflux back up as easily... I recommend Avacado now as well... for not only just this reason, but if you really feel the need to give baby solids in hopes it will help, its also full of good fats, good sugars, and Tons of nutritional value!

  There is nothing quite like the pain a mother feels emotionally, not being able to kiss the boo boo and make it better... the anticipation of the horrible nights haunt me through the day... the non stop questions I ask myself... "is it going to be like last night? will I get two or three hours sleep? or is it going to be like last week.. where I had to doze in and out of sleep periodically having to change position because my baby keeps choking?" Sometimes the anxiety is so bad I cannot even fall asleep... I end up laying awake all night. My partner and I were really looking forward to co-sleeping with our little man. That just doesn't happen... Jakob cannot sleep on a flat surface, or his reflux will keep us all up all night. Before we knew he had reflux there were several times where he had woke me up by thrashing in his sleep, he couldn't breath and was choking on his own vomit that had come out his nose and mouth as well. He also has a constant stuffy nose, this is due to the stomach acids backing right up and into his nose, injuring sensitive membranes. We currently have him in a bassinet that I have set up especially for him, so he is always on an elevated surface to sleep on. During the day my baby boy naps on me or in his car seat....most of the time on me though.

 A very short while ago we tried medication, Rinitidine, basically its baby Zantac... for heartburn, we had him on it for several days. This stuff tastes like earwax and mint, not a great combo, in fact anything mixed with earwax tastes pretty aweful.  The medication definatly did not help, in fact his reflux flare ups increased and became more severe, causing him to develop Sandifers syndrome... which is a reflux pain related seizure, sandifers syndrome will stop when reflux stops... We stopped giving him medication about 5 days after we started it, the first night was rough but not as rough as it had been on the medication, but the Sandifers continued, and let me tell you, there is nothing quite more terrifying than hanging onto your baby for dear life while he thrashes in your arms uncontrollably. Night 2 without medication was a bit better... he woke 4 times  and only two of the four times did he thrash. Night three was pretty awesome off medication, he woke up after sleeping a solid 4 hours, nursed for five minutes ... thrashed off and on for 20 minutes... then he was out for another two hours.... was up at 4am, nursed, thrashed off and on for 10 minutes than was out until 6 am.

  I have to take every day, one day at a time, just because we have a few good days doesn't mean we will have another good day (or night)... as a breastfeeding mama I found I had to change my diet drastically... any acidic foods or juices can cause baby's reflux to flare up. Tomatoes are our number 1 worse food, anything with tomato sauce can cause major issues... it only takes 1 tsp of tomato sauce to cause my boy to vomit all day and night... so... No pizza, lasagna, or pasta. I really cannot have any chocolate, but if my sweet tooth is really bad I have maybe five chocolate covered blueberries at most. I cannot drink apple juice or orange juice, those cause reflux to get really bad as well, I haven't tried any other juices, most have citrus fruits in them. Wheat is no longer a part of my diet, I am not sure why but it definatly triggers my little mans reflux. Basically, anything you should stay away from that can cause gas, will cause reflux to rear its ugly head in an infant. I find that having plenty veggies to snack on during the day is good. I dont eat any processed foods of any kind but I know those can cause reflux to act up as well... safe snacks are carrots, celery, yellow or red peppers, pears, avacado, breast meat from chicken or turkey, and cereal (with coconut milk or almond milk). Avoid any dairy products if you can... at most have a small amount of yogurt for the probiotics (3tbsp at most). Of course as it has only been 6 months of reflux, I am sure my lists will grow.

 Countless nights have I sat up all night holding my baby vertically so he could sleep, the back pain and migraines that came with it were almost too much to bear. It wasn't until I noticed a direct correlation between foods I was eating and how bad his reflux was that I started leaving foods out of my diet.I have also noticed that when he goes through any  major developmental stages he has flare ups as well. We still have many bad nights, and I have accepted that we won't sleep through the night for a long time yet, but I have hopes that he will get through this in the next few months. I am starting to enjoy having my baby finally, but it has been a long hard road.

 I am currently debating as to wether or not I will attempt another medication with Jakob. Medications make me nervous, almost as nervous as vaccinations. Mainly because of my immune system strangeness, and random allergies that pop up. There is a possibility that I will take Jakob for further testing, but I don't feel it is really needed considering he has all the signs and symptoms of reflux other than weight loss... hes a chunker... a big chunker.... and typically babies with reflux fail to thrive. Jakob eats when his reflux is bad, then throws up, then eats more, its a viscous cycle. The sucking and swallowing action of nursing actually relieves the pain from the reflux and as long as he is nursing the food stays down... but this in the end causes his reflux to become that much worse because he has over filled his fat little tummy.

 I am happy to say with all my dietary changes it has helped to reduce the amount of reflux issues we have, without medications. He has not lost his voice in a few weeks now, which makes me very happy. Yes he has lost his voice, for several days at a time he wouldn't baby babble because it was obviously painful for him. The stomach acids burned his vocal cords and throat so much he has even had a hard time swallowing and has cried while nursing because it hurts. I get some free hands during the day now that Jakob is sitting up on his own, he throws up less now because of that very same reason. I will be trying some natural products that are out there on the market this week... I will make sure to edit this particular post with the names of said products and results of using them.

  I heard of a book called *Welcome to Holland* ... Have you? It's about raising a child with disability.. although reflux is not technically a handicap, it is at the same time. 



by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland