I was talking with my husband the other night and realized that this week will be the second anniversary of B's first FPIES reaction to solid food-- rice cereal. In some ways, it is so daunting to look back and think that yes, it has been two years, and yes, it has been two years and we are still stuck in THIS?! But then looking at it from a different perspective, we are in so much of a better place now than we were then, in that we understand more of this beast everyday. We are still nowhere close to the zone where she stops reacting to new things but I am hoping that we reach that point in another year or so. I mean, we will eventually run out of foods to trail right? Haha!
One thing that some of you may not know about me is that I have a heart condition that is, currently, very well under control. When I was pregnant with B, they discovered the condition after several ER visits because I couldn't stop my tachycardia (before I was preggers, I knew different interventions that would stop it but nothing worked when I was pregnant). Once the docs recorded my heart rate during these episodes and recorded how long the episodes went on (I had some very attractive heart monitors to wear, one around my neck-- being extremely pregnant at the time, I looked like Flava Flav if he had swallowed a basketball), they called me when I was 39 weeks and told me that I couldn't deliver B at the base hospital because they were afraid that due to our lack of specialists, they would lose me, B, or both of us.
When I went into labor, my water leaked for days before they actually did an ultrasound and believed me that I was losing amniotic fluid. The ride to the hospital was ridiculous-- it was an hour away and there were so many medical people in that ambulance that N was not allowed to ride with me. He drove behind the ambulance in the car and I remember just watching him from behind the oxygen mask. The doctors had both of us terrified-- we didn't understand why they had disregarded this throughout most of my pregnancy and now they were petrified of me and my girl not making it. The bad news is my over 24 hrs of labor still led to a c-section (I was SO bummed!) but the good news is, my heart was fine and so was B. Apparently, when your heart reaches a certain speed and remains there or goes higher when you are pregnant, the risk is high (according to those docs) for your body to cut off blood flow to the placenta and the baby, hence their concern for B. After she was born, the pressure was on for me to be sent back to the states for surgery, but as with all things in that particular bureaucracy (hehe), it took months for the surgery to be scheduled, as it had to be done stateside.
With my husband gone out to sea for most of B's infancy, with us living overseas apart from any family, with the docs telling me that my heart could essentially "crap out" on me at any moment, and with her screaming, lack of sleep and tons of unexplained symptoms, I still stayed sane, but I was scared. And as it became more and more evident that there was a problem brewing with B's system, I became more scared--- how could this baby make it without me? I was her lifeline and following her severe FPIES reactions with solid foods (4x before diagnosis) and minor reactions to so many other foods, that fact was even more apparent. At 8 months, we pulled all foods, not knowing what to do to make food safe for her.
From that first reaction until after my surgery, I pumped diligently each night after her bedtime nursing. I wanted to have a stash for her, just in case I couldn't be there. Something to get her through the first days and nights until N would have been able to convince the docs that we had to order special formula from the states. I wrote letters to her and N and hid them around the house, and I pushed myself to finish her baptism gown before the surgery. I remember fighting with the medical staff who initially refused to let B travel with me for my surgery (I had to go to CA) and finally had the ombudsman contact someone very high up in the command who permitted her to fly with me. I remember fighting tears on the phone, telling them that they didn't understand, she had NO FOOD, I was her FOOD. . . and no one believed me. Finally, they released N from the ship (they were off floating around somewhere by the end of September that year) to come home and travel with us.
My surgery was supposed to be the day after arriving in the states, so we traveled with a ton of frozen breastmilk (it was fun going through security and customs! haha) all of which I ended up losing because the flight attendants wouldn't allow us to store it in their fridge (even though it was all sealed up in its own little container) and we had to rely on bags of ice for over 24 hours of traveling. When we got there, the surgery date was rescheduled for two weeks later. I pumped like a fiend as much as I could while in Cali, but I never got much from pumping and since B nursed at least 12 times or more a day at that point, well, there wasn't much time to pump! But we also started our Kix trial well we were there, again, out of need, out of necessity. And we played around with cooking bananas, which seemed to help her improve her tolerance of them. Once the surgery date came, I was ready but again, still so scared. They all had me believing that I would never see B or N again and I was just so scared for what might happen with her. .
Happily (As I am sure you have figured out by now, since I am not writing this from the afterlife), the surgery was successful and it only took a few months afterwards for the episodes to die down (something about the procedure creating a hole that needed time to heal). I have been told the abnormality can grown back, but haven't had anymore severe symptoms as I did when I was pregnant with B. I am so thankful for everyday I have with my B and with N.
So my long winded story has a point-- fear. We are subjected to it on many levels and often from many sources. Much of the FPIES beast can cause a great amount of fear, fear for the unknown, fear for how our child could be cared for if something were to happen to one of us as the primary caregivers. I think the greatest thing we can do for ourselves as parents in this FPIES community and for our children, is to not contribute to the fear. There is enough of FPIES that we cannot control-- we can control our attitudes, we can control our approach to others in our community, and we can control our ability and willingness to reach out. Without reaching out to others and establishing connections, without refusing to engage in drama that this fear can create, we cannot support our community to the best of our abilities and we cannot garner the support we need from the global community to help our children as well.
Because of these experiences that I describe above and others that have truly defined my life, I have always been driven to reach out in my professional and personal life, to support those who aren't being adequately supported, to find those that others have overlooked and forgotten. And in our FPIES community, the same standards apply--- it is my belief that we need to all strive to leave NO ONE behind. So I ask of everyone out there, remember another family today, or another mama that might be struggling, or another child that is stuck in a hospital admission. Remember those who might be swept under the rug or forgotten by someone else. Let's eradicate all of the fear that we are able and let's create some connections. Just as we are all lifelines for our children, let us all be lifelines for one another.
