10 months old!

Wow Halle is 10 months old!!! Where has the time gone!? Life has continued to be one roller coaster after another. Up until 9 months she was a very sick little girl. She suffered hand foot and mouth disease, another pretty bad FPIES reaction and ended up in hospital with pneumonia for the second time in her short little life. Thankfully since then she has been sickness free! So a whole month without even as much as a runny nose. That has been so nice!!

When she had her second FPIES reaction i decided to cut all the food i was feeding her for awhile. Her poor gut was a mess! The poo was insane and she needed a break so we could try get her back to baseline. Since then i have been in contact with an amazing lady who was the one who got me started on the whole gut healing journey our family started about 4 years ago now. She also had kids with FPIES and she used the GAPS diet to help heal them. She gave me some awesome insight into the unpredictability of FPIES and how sickness, teething and anything detoxing can trigger FPIES flare ups. It is all to do with inflammation in the body and the body not coping with the food proteins and rejecting them causing the reactions. If the body isn't fighting inflammation too much then more foods can be tolerated. I definitely see this is true with how Halle can have safe foods (herself or ones that i'm eating and she can tolerate through breast milk) and then after a reaction to something else, or when she's sick she will lose them. Sometimes i can add them back after a break but not always. I saw the same with Abbey and Iyla, but back then i never understood what was going on! FPIES is such a mystery and so confusing!! It goes against the basic understanding of most allergies. After my chat to this knowledgeable lady i realised that i needed to slow down on feeding Halle. Her body struggles to even cope with the fiber in vegetables, it's all too much on her gut. So now it is all about healing and reducing inflammation. Slow cooked broth and meats are amazing at healing the lining of the gut, so that is what we have started with. For about a month now that is all i have been feeding Halle. Boring i know, but if it will help in the long run i am all for it. Soon i am going to VERY slowly start introducing carrot juice. Carrot juice is known for it's anti inflammatory properties. I really hope she will tolerate it! Then after she turns one I'll start adding in vegetables that i know she doesn't react to through breast milk. They will be slow cooked in broth to help them be easier to digest.

Over the past month, most of the time things were great with Halle. She was such a happy little girl again. Life was easy and i was actually getting back into a nice routine and even keeping the house clean! hahahaha. But without warning things have been pretty rough again lately. She cut her 5th tooth and true to FPIES form, this messed with her gut again. She also found some crumbs of things on the floor and has had a mild reactions which have caused screaming, gross poo, fighting every single sleep, waking a million times a night and just not being her normal happy self. I have also lost a few foods that i used to be able to eat. It's so hard to become even more restricted. But i know without a doubt that breast milk is the very best for her right now. I have gotten this far and she mostly does amazing, i can't even play with the idea of formula that she more than likely wont even tolerate. She is putting on weight, i am able to maintain my weight and she is getting enough to eat. It's a lot of work and there are definitely days i wish i could give up, but i know i can do this!

I'm really hoping things settle down with Halle again soon and we can avoid more reactions. But with her starting to be on the move i have a feeling we are only at the start of the hardest part of this journey. She isn't crawling yet thankfully but she is learning to bum shuffle and can move short distances. It's amazing the things she finds on the floor even after i've just vacuumed!

We're baaack :(

It's been 4 years and 4 months since i last updated this blog!! It feels like a lifetime ago!! So much has happened in those years and our family has changed so much!

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.