Tuesday, November 21, 2017

The Saga of Paul's Stomach

I've been waiting a long time to write this post...

Many of you have been so kind to ask how Paul is doing. Until recently it's been a different response most every day. I kept thinking I would be able to sum up his tummy troubles sooner, but I wanted to wait until we had some answers and some resolution. I think we're finally there. So, here is a pretty detailed account of what we've been through with him--for my own memory, as well as anyone else who's interested or who may benefit from our trial and error.


If you recall, Paul had a bit of a traumatic entry into the world. From the start he was puffy, bruised, and red as a tomato. Shortly thereafter, he developed a newborn rash just in time to complicate his newborn photo shoot. Cradle cap and baby acne followed close behind. Then eczema crept its way into the mix, to confuse our treatment plans of his head and face.


At less than one month old, Paul started spitting up profusely and regularly. Moments after we took this picture of our sleeping angel at his baby dedication, he spit up covering his outfit, my 2 shirts, as well as Jon's shirt and pants. We were grateful it was after the ceremony and not before or during our time on stage, I'm sure the family on stage in front of us was too! We were also glad this wasn't his first mess of this nature, so we had backup clothes for Paul and me, Jon just had to find an air dryer in the bathroom.
As the spitting up became more than what we remembered was normal with Isaiah, we started to ask questions and check in with his doctor. I remember posting on Facebook, so relieved that the pediatrician had diagnosed him with classic reflux, thus I would not be joining the ranks of breastfeeding super-mamas on restricted or elimination diets. I also remember that many of you commented with your condolences and advice on my thread. I thought I was in the clear with simple reflux that would respond to medication, but you experienced mamas knew what I was about to find out, that there was nothing simple about it...

Per the doctor's recommendation, we started our precious little man on Zantac. After no improvement, two weeks later we doubled the dose. Next, I went off dairy and soy. No small feat, as I was previously going through a gallon of milk a week, probably a half gallon of ice cream, and a couple pounds of cheese. I had joked with Jon that other people have backyard chickens, we needed a backyard cow! Plus, soy is also a hidden ingredient in most of my go-to foods. So, drastic meal and snack overhauls took place around here.


As he continued to worsen, we also added Nexium. I started on a probiotic and we increased the dose of Nexium. Then we were confused about whether his arching, screaming, and severe diarrhea, were part of his disorder, or due to the Nexium? Were we making the poor kid worse?


So, we went for more opinions. Our pediatrician recommended a GI specialist and a Speech Pathologist/Feeding Therapist. It wasn't easy to get an appointment with either of them, and by this point, we wanted any help we could get, so we scheduled both. The GI specialist was, unfortunately, no help. But our dear feeding therapist was a dream to work with and so sweet to Paul.


Thinking his discomfort was due to gas from a bad latch, s
he had us start some tongue exercises, tried kinesthetic therapy tape, diagnosed him with a posterior tongue-tie, and hooked us up with an infant probiotic for him. So, next we went to a dentist who agreed he had a tongue-tie and revised it.

At about 4 months, he started to become very interested at mealtime. So, with the blessing of our feeding therapist we started to offer him some food, because this guy is strong and if we didn't start giving it to him, he was just gonna grab it out of our hands whenever it was close enough!



Although he loved strawberry in his baby safe feeder and gnawing on carrots, we noticed some red blotches around his mouth and neck for a few minutes after he ate. When we offered him avocado for the first time, at the feeding therapist's office, together we watched him break out wherever it had touched him.


Our therapist talked to the nutritionist she works with and mentioned the foods he'd reacted to. The nutritionist thought maybe it could have been a birch pollen allergy, with
trigger foods being: avocado, strawberries, carrots, almonds, apples, apricots, banana, celery, cherries, chicory, coriander, fennel, fig, hazelnut, kiwi, nectarine, parsley, parsnip, peaches, pear, pepper, plums, potatoes, prunes, soy, and wheat. Try saying that list 5 times fast!

So, I stopped eating ALL of those things (not that I was eating a lot of chicory, coriander, or fennel that I knew of) and we stopped feeding any of them to Paul. That was hard with him because fruits and avocado are such easy first foods. It was hard for me because Potatoes, Soy, and Wheat! I never did a strict elimination diet down to like 4 or 8 ingredients, because he never had any blood in his stool. I did a few hypo-allergenic formula trials while I was getting my system cleared out, but I'm too stubborn to give up nursing and switch to formula.


But he kept reacting, even when we avoided that whole list. So, I took dairy out of my diet again too. And we took out a second mortgage on our house to buy more Tummy Calm, the one thing we found to bring him some relief! After 11 reactions to various foods, we were bewildered. We finally made an appointment with our allergist.


We love our allergist! He helped us through Isaiah's tree nut allergies and now walks with us through Paul's myriad of concerns. He skipped skin testing because Paul's skin is so sensitive that it was likely to light up like a Christmas tree with false positives, and went straight to blood testing.

A week later, the results showed Paul is allergic to MILK, EGGS, PEANUTS, DOGS, and HAPPINESS. Just kidding, about that last one, but really God? Those are most of Your best inventions.

Here we are about 6 weeks later, avoiding all his allergens, and he's doing well. We used to have to walk him around in the middle of most nights to calm his painful tummy down and comfort him back to sleep, now I just nurse him when he wakes up and he settles right away. He hasn't had a bad reaction since his testing, and he isn't hurting for size, as he's EXACTLY the same height (29.5 in) and weight (22.0 lb) as Isaiah was at his 9-month check-up, 85%!


Our
next step is to start eating more baked goods to try to build up Paul's tolerance to milk and eggs. It will be a sacrifice, but I'm willing to do whatever it takes to heal Paul's gut even if it means such hardship as forcing myself to indulge in delicious muffins, cookies, and cakes again. I anticipate the pounds I've seen fall off through this process of elimination diets, will creep right back on as I reach for a few more baked treats this holiday season.


Thank you all who have prayed for and supported us through this ordeal, especially those of you who have made special meals with us in mind, I know it's not easy. I have gained such better understanding of the dietary restrictions many of you live with every day, as I've tried almost all of them. Between our two boys, I don't think there is a common allergen I have not had to read labels for in this past year. I love how God teaches us empathy by letting us walk in other people's shoes.


Next Thanksgiving, if I can eat all the pumpkin goodies with pounds of cream cheese icing I will be thankful as never before. For now, Paul and I will count our blessings, because when a few are removed, the abundance of all the others is even more clear. Savor your treats this holiday season whether they be delicious foods, snuggles with cuddly babies, or conversation with visiting family. God is so kind to us. 

"Rejoice always, pray continually, give thanks in all circumstances;
for this is God’s will for you in Christ Jesus." - 1 Thessalonians 5:16-18

No comments: