Monday, August 11, 2014

Our Unhealthy Past

Many of you know that we have struggled with LJ's health since her birth in 2009.

Here is a little recap of what has happened with her health:

a couple days old

At Birth
LJ, our firstborn, was born at 5 lbs. 14 1/2 oz. and 19" long. I had been induced at what they said was 38 weeks even though it was full term according to my cycle dates. I had been contracting for over 3 weeks. After I was induced, I still had a 3-4 hour labor. I had back problems during pregnancy and could barely walk, hence the induction. At birth her hips were loose, but that resolved within her first day. We waited a little while for her first bowel movement and wet diapers were not frequent initially. At 48 hours, LJ spiked a temperature and was sent to the NICU. Immediately she got a spinal tap and an IV with antibiotics for 24 hrs. From the very beginning she wasn't very good at latching and so we struggled with nursing. (Looking back I think the fever was due to poor eating and I wish I would have told them to supplement a little formula to get us started.) She also wanted to feed 45-60 minutes, which soon wore down my back and sent me into emergency back surgery when she was 4 weeks old.

NOTE: all vaccinations were given on time!

Early On
At 3 weeks old, she transitioned to the bottle. Unable to keep regular formula down, she went right to a soy formula. We had to watch her weight constantly as she was labeled with Failure to Thrive. (Oh if I could just talk to earlier self to help with this diagnosis.) She had baby acne right away and that lasted for a while. She also developed bad diaper rashes and eczema. She also could not eat a normal volume of milk. Projectile vomiting and arching was common at feeds. We had to try to keep her calm.

3 months old and just out of NB clothes

Even at 7 mos she could only take 3 oz of milk at a time. We charted everything she took in. We would do a happy dance if we got in 18-19 oz. in ONE DAY! (If this had not been my firstborn, I would have been a sore mess knowing that a normal baby gets 28-32 oz. a day! ) Often, LJ would refuse to eat any of her bottle. I would force it, offer it every 10 min, and often rock her as I wept. I tried to stay calm. I prayed and sang as much as I could. When she wasn't eating, she was gnawing her fist in hunger, but knowing that her tummy would hurt she would still refuse.

One nurse would ask if she had Down's. I tried to be gracious but my heart hurt. Not only was feeding my new baby so stressful, but my back kept me in constant increasing pain. One orthopedic doctor would tell me... "ehh, she'll eat when she's hungry". My pediatrician was very helpful but she didn't have answers. She kept ruling out things... but looking back a lot is so clear if only someone would have known what to look for.

I finally got a brain around 5-6 mos and took a video of a normal feed. I was so frustrated and overwhelmed that I thought... let's make these people see how difficult it is! What a brilliant idea! She was immediately diagnosed with silent reflux. (Clue: If a baby refuses to eat, cries, gnaws their fist, and eats better when they are asleep... REFLUX! Boy do I wish I would have known that. ALSO... wet burps... yep not normal! That's reflux too!) The answer they gave was Prevacid! It didn't work at all so we went off at 10 mos. (Honestly many other parents I have met with that have tried it have not had any success with it!)

Rice cereal was given in each bottle to try to weigh down the milk to keep it in her tummy. This did help her eat more regularly and kept the milk down more... but it still didn't fix anything.

7 mos old. Happy Valentine's Day!

Starting Solids 
The norm was to start solids at 4 mos, but we waited until 7 mos. and kept the bottle until age 2. We started with proteins right away. At age 10 mos she had an MRI done. Around age 11 mos, we went to a pediatric specialist in Indy and even consulted a dietician. It finally felt like we would get some help. They ordered her a Pediasure equivalent in soy form called Bright Beginnings and a powdered fatten-er called Duocal.They also ordered a Feed Study at this point because of her bad gag reflex. All came back normal.

The dietician actually made things worse :( She at first wanted us to push dairy even though she was off dairy. We had to remind her no dairy... Then, she said well push margarine or butter in everything to beef up calories... DUH that's dairy... but not thinking we did that for a little while until I got a clue and I just went back to plain food.

Thankfully LJ showed great development! In fact, she was checked out by 2 First Steps therapists at 2 separate times and passed with flying colors. They were a huge encouragement! I still remember one of them saying, "your job is to offer the food and her job is to eat it". This really helped me to have more peace at eating times! What great advice.

16 mos.

Making Some Progress
At 16 mos, LJ finally made the chart! She was 3% of the national average! I did a happy dance because she gained 3 lbs in 3 months! That was like super awesome for her! I definitely think most of her progress was from the Duocal. She continued with the recommended vaccinations and ended up with chicken pox around this time.  She also had antibiotics for slight pneumonia a few months later. 

20 mos old

At 20 mos, I finally started making a correlation to food allergies! Not sure what took so long... no one had even suggested it. I had given her Benadryl off and on for what I thought was seasonal allergies... but NEVER THOUGHT OF FOOD ALLERGIES! Geesh! Anyways, I saw a clear reaction (runny, itchy nose, sneezing right after eating at a restaurant) on our way to see a Pediatric GI Specialist and I gave her Benadryl which helped immediately. The GI specialist helped us confirm a suspicion of allergies. She also informed us that reflux is eczema on the inside of the body so it made sense that she had both. (IF ONLY SOMEONE WOULD HAVE SAID THE WORDS AUTOIMMUNE!)

At 23 mos, she had an endoscopy. She had some irritation, but other than that, nothing came back abnormal. She did suggest an allergist at this point, but being that she was so young we didn't want to do the prick tests. Instead we eliminated foods and watched that no dairy or eggs got into her diet. She made VAST IMPROVEMENTS AT THIS POINT!

2 years old--- starting to plump up for sure!

More Progress
LJ continued to have progress. Taking away the bottle was soooo hard at 2 years old. She would only take milk in a bottle and water or juice in a cup. There was no forcing her to take soy milk at this point. When she dropped the bottle, she was done! I remember our pediatrician saying... she is the most strong willed child she had ever witnessed in her practice; strong willed like her own daughter :) We tried soy milk Popsicles, chocolate flavored, and even smoothies... eventually we gave up and just offered it to her several times a week and sneaking it her oatmeal, which was a staple of hers. Instead we pushed V8 fusion juice to at least boost her calcium in take. At about age 2 1/2 she finally started drinking it on her own.

over 2 years old signing "cat" in ASL
Recent Struggles
She was growing very well... still a little short in stature, but the food allergies were definitely a major factor in her growth. As soon as we eliminated them, she did so much better. She also developed Urticaria at some point. Basically you break out in hives from extreme cold or heat. Thank you google! She had always complained of her bath being too warm and had broken out in hives here and there. But now it was more pronounced. 

Summer she turned 4

At age 4 1/2 she suddenly started major diarrhea. We eliminated all of the top 8 allergens to try to work it out. She got better, but no true resolve. After blood work and stool samples, we were off to the allergist at age 5. After prick testing we found that she has sooo many environmental allergies, but only one food allergy showed positive, walnuts. So... we tried introducing foods again. Wheat... not good. Peanuts... fine. Soy... fine. They called wheat an intolerance. Such a foreign word to me made me go researching again.

Several friends threw around a new word to me... leaky gut. That led me to GAPS. So that's where we are now. Suddenly so much is making sense, which is great because our third born has developed a dairy allergy and eczema! 

THIS MOMMA WANTED ANSWERS... 5 years was too long to wait! Hopefully our journey can give you answers that you may be searching for!

Are long time prayers being answered? Come join our journey... hopefully a journey to healing for our family...