For those of you who don't know us personally, we have added 2 more gorgeous little girls to our family since my last update. Violet Hope and Halle Grace. They have added so much love and joy to our lives!!
Violet was born on the 8th of June 2017. We were richly blessed with her and she was spared the awful life of FPIES. It was such an amazing experience to have a baby that didn't have so many issues with food! She was such an easy baby! When we started solids she had some mild intolerances but we had learned of the healing properties of the GAPS diet and after 6 months on this diet she was pretty much completely healed.
Halle was born on the 26th of January this year and is now 8 months old. The first couple of weeks of her life she showed no reaction to things in my breastmilk and we were so hopeful that we would get spared FPIES again. But God obviously had a different plan for our lives. From 2 weeks of age Halle started showing signs of intolerances. She became spewy and refluxy, her poo became foul, she screamed a lot and barely slept. Right away i began cutting foods out of my diet. I was hoping it would just be a few things that were affecting her. But over a few months my list of safe foods kept dropping. Eventually i was only eating 20 different foods/ingredients. BUT we finally found a baseline!! It was so nice to have a happy baby. It has been completely worth the restrictions.
We thought we were pretty sorted when we started solids. If we could keep Halle away from the foods i wasn't eating and only feed her foods that she didn't react to through my milk we should be fine! But I was so wrong. On Thursday Halle had a severe acute FPIES reaction to egg. I have had egg in my diet for ages with no problems. Halle has also eaten egg herself 5 times before this with no reaction at all. I fed her less then 1/2 a teaspoon of some yolk from my morning boiled egg at around 7.30am. Everything was normal and she went down for her nap as usual at 8.30am. Cue the scream from Iyla 1 hour later that Halle had thrown up in her bed. I had been outside helping Violet with something and wasn't too worried as the girls love being dramatic about Halle's little spews. But when i saw her bed i knew something wasn't right. Everything was covered in vomit. 5 min later she projectile vomited again all over me. The profuse vomiting went on every 10 min for an hour and then the next hour she just threw up bile or dry retched every 10min. She also did an explosive disgusting poo in between all of that. She became very lethargic, floppy and grey and at one point unresponsive. I've never been so scared in my life. I was trying to organise getting her to hospital before she had become unresponsive and Reuben was trying to rush home from work to come with me. But thankfully by the time he got home she was starting to pick up again. There isn't much that hospital can really do, but i never want to be alone with her again when she goes into shock! It's so traumatising! It was a full blown and very typical FPIES reaction, but one we had never truly experienced before. The older girls reactions were never this severe.
These photos are about 15 min apart. The first one of her in my bed was when she was at her sickest. You can see the grey tone of her skin. The photo doesn't show how floppy she was. She was like a ragdoll. I know now that she had gone into shock. Poor bubba. The second photo was her slowly recovering. She started looking around again and wasn't completely out of it anymore. Her colour was back a bit too. Over the rest of the day she slept a lot and didn't feed much, but she was much much better. The next day the diarrhoea was awful! But other then that she was thankfully back to her happy little self.
So as much as we hoped and prayed we wouldn't need to experience FPIES again, here we are. It's hard to understand why, but i'm putting my trust in God that he knows what his plan is in this. I'm confused and upset but we love this little girl with all our hearts and we will do everything we can to help her through the next year or so. We are so very thankful that we know so much more about gut health this time around. Although FPIES is something else and doesn't conform to anything i've really learned. So i'll continue to learn and grow and try to understand this strange condition more. In the meantime we will go veeery slow when we introduce more solids. Nothing is necessarily safe anymore. For now we are sticking to just broth to help her gut recover from her reaction.
