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Posted 2019-08-05T00:40:13Z

4.5 months💗

We can’t believe that our girl is already 4.5 months old! Since my last update, we have had a couple of appointments with the cardiologist, as well as almost weekly appointments with Dr. Temple for weight checks. Dr. Stewart, Emmy’s cardiologist, is still very happy with how Emmy is doing! Her oxygen saturation is staying stable (mid 80’s), and she finally hit the 10th percentile in weight! WOOHOO!! Praise Jesus! She eats and sleeps like a champ, and for that we are grateful!

 

About a month ago, Dr. Stewart spoke with the heart surgeons, Dr. Fraser and Dr. Mery. They told her that they wanted Emmy to be evaluated for intestinal malrotation (improper coiling of the intestines). While this can happen to anyone, it is more common in people with Situs Inversus. The danger with malrotation is that it can cause Volvulus, an obstruction caused by the twisting of the intestines. We were referred to Dr. Dyer Heintz (pediatric gastroenterologist) for an upper GI series to check for malrotation. The results showed what they believe to be a mild case of malrotation, so we will see Dr. Jeffrey Horwitz (pediatric general surgeon) on 8/15 for a consultation. Prayerfully, it will not be significant enough to warrant surgery!

 

A couple of months ago when we saw Dr. Stewart, she was a little concerned that Emmy wasn’t gaining weight at an adequate pace. We went ahead tried supplementing with formula, and it was an epic disaster. The first time I gave it to her, she got very sick and threw up a couple of times. She was extremely lethargic and weak. About a week later, we tried a more sensitive formula, and once again, it did not go well. The second time she threw up 4-5 times and she looked absolutely awful. It was terrible, and very scary. Each time I gave her the formula, it was only 1-2 ounces, so a very small amount. I ran this by Dr. Heintz when we saw him, and he immediately said she likely has FPIES, Food Protein Induced Entercolitis Syndrome. While this can be triggered by any food/allergen, in Emmy’s case, he believes she has a severe cow’s milk protein allergy. Kids usually outgrow this within a few years. For now, I have cut out all dairy from my diet and if we do need to supplement with formula at any point, she will require a hypoallergenic brand.

 

Here is what we need continued prayer for:

-Stable oxygen levels

-Continued adequate weight gain

-No surgery needed for malrotation

-Keeping Everly’s toddler germs away from Emmy....which has proven to been quite difficult🤪

 

We continue to be amazed by everything the Lord has already done on and through Emmy’s heart journey. Our prayer is that God would use us to bring glory and honor to His kingdom in ways that we never would have been able to if it wasn’t for this path He has so faithfully and purposefully put us on.

 

{ “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” } ~ Romans 8:28

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Comments (2)

  • Linda Radwanski
    Linda Radwanski

    Will pray for your specific prayer requests for Miss Emmy. I am so happy she has such great parents and such diligent and knowledgeable doctors. To identify that food protein allergy so quickly is amazing. I am almost sure our second daughter had this and we were in and out of hospitals for a while with her. I had quit breast feeding due to work obligations and my husband being in dental school, not knowing ( and really not ever firmly knowing) what her problem was. I just know we tried every kind of formula and even goat’s milk and a carbohydrate free one, called Ross Carbo Free that was honestly just in the testing and sample stages. She ended up with a supplement of calcium called neocalglucate (?) and of course, realizing it was too late to just breast feed her which is what she needed. I knew in my gut we had made the wrong decision for her but honestly back then (38 years ago) there wasn’t this firm diagnosis you have received. She did outgrown the allergy, by the way. I am so so grateful that you posted this and so so happy you can give Emmy exactly what she needs and what I couldn’t provide my daughter. The last two were breastfed entirely with ZERO supplements and while they too, were in the 10% most of the first year ( they’re not anymore 🥰🥰 ) they had no digestive problems at all. God bless you all. Sorry to have taken up so much space and time but I just had to share with you my personal story. Much love, Linda

    6 months ago · Reply
  • Kellyn Krueger
    Kellyn Krueger

    What great news that Emmy has hit the 10th percentile for weight! She is so adorable and smiling in so many of those pictures! She looks a lot like her big sister Everly to me. :) I'll be praying for her and you all, and look forward to more good news in your next post! Love, Kellyn

    6 months ago · Reply