Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Tuesday, February 22, 2011
Sleep, precious sleep....what is that anymore? We have always had problems with Little Man's sleeping. Well before FPIES diagnosis, or even before he was getting sicker by the day- he had disturbed sleep. He was only 10days old and he was keeping me up at 2am, wide awake. This was unusual already- my other boys would barely open their eyes at night, just enough crying to let me know their tummy was hungry and I would quietly nurse them back to sleep. Since my first born, we have always kept a twin bed in their nursery - it makes for easier night time nursing sessions....often we would both fall back asleep until the next nursing session would wake us up. This only lasts a few months and after my first, I really learned to simply cherish it....they are only so little for such a short time.
My first born was also a difficult napper- he would only sleep for 45min, unless he was being held- then we could get a longer nap in but that only benefited the holder if you needed a nap too! Naptime = mommy down time....get laundry done, dishes done, make dinner, or just simply relax! This was hard enough with just one child...now add 3 more boys to the mix and having to hold an infant for his naps gets challenging in more ways than one! But that quickly became our routine by the time he was at least 3-4mo.old- he would sleep best if we held him for his afternoon nap. For whatever reason, his morning naps were fine- but the afternoon nap required holding, patting, rocking, squirming, nursing, rocking, patting....just to get the much needed rest that an infant needs....and he was still fussy in the evenings but without that nap he was a bear. So, that is how we did it - his daddy or I would hold him so he could get his rest (being that his night time was such a disturbed sleep mess, I usually needed a nap by then anyway)!
This disturbed sleep is one of the first reasons why we thought we needed to just move on getting the solids started, or supplement with formula, or something....which is what started the spiraling that brought us to the elimination diets and reflux meds, and GI consult and the endoscopy, and the elemental formula only diet, and finally the allergist consult to confirm the FPIES diagnosis. Sleep remains disturbed through all of this but once we got his triggers under control we started to see a much better pattern to his sleep. Still on a liquid diet, one would expect a growing toddler to need to wake to eat at night; so going to bed around 8-9pm, waking around 11pm-12am to take a bottle, back to sleep until 5-6am for a bottle and sometimes back to sleep but usually up for the day IS a decent pattern....and we had that....before our Soy challenge. We've been trying to get back to that since. We anticipated getting there with gut rest and 100% calories via IV (TPN) but instead things got worse and the night wakings increased, cries in his sleep, restless sleep. That lasted for ~3weeks after the hospital stay. Many people (doctors included) tried to say it was simply related to being in the hospital and that could be a component of it but we know there is so much more to it than that.
We've had a sleep study that revealed...nothing. Ok, so nothing is a good thing. No abnormal apnea, no abnormal brain activity, no restless legs....nothing except a sleeping, dreaming little boy. Until.....he woke up....actually they noticed (and I could tell too) that he was scared BEFORE he woke up. You see a sleep study involves being wired to multiple (dozens) of electrodes on your legs, chest, face, ears, and head. I would be scared too. But I remained calm, for little man. And we did our best with his night time routine and after almost an hour I was able to get him to sleep....and he crashed, but he must have been dreaming about being held down to have those electrodes glued to his body because he woke up and was mad, scared, thrashing and screaming. He did not want his bottle, he did not want me, he just wanted to be free of all the wires. Maybe it reminded him of the TPN and he was scared we were doing it all over again, or that needles would be coming. My momma bear kicked in and I was done. I pulled every electrode off and we left the sleep study after just 3hrs. They were able to capture some data and I feel like it was enough- if he had sleep apnea or restless leg; it would have showed up in that time....and those were the two biggest things we were looking for.
So, the sleep study doctor did not have much input....except that we are already doing everything we can. We have a calm bedtime routine, we've tried all the "tricks" for good sleeping....all except cry it out. Each child is different and a mom knows when they are ready for cry it out....Little Man is not. It would only add to the problem. Actually the sleep study confirmed that- go to sleep scared and wake up scared. He does not like being alone, he does not like being in closed rooms or small spaces- he never has. But we have always put him in his own room so that noises wouldn't disturb his sleep but also so that his many night wakings would not disturb his brothers sleep. Many months have passed and we have been getting him out of bed to bring him to the living room to sleep...and he sleeps better- but I do not. So, one last ditch effort to just get us through this stage with better quality sleep for all- without making things worse in the process, we bring back the twin bed idea - where we join him in HIS room. Teach him that his room is safe, is comfortable, is his place to sleep (and sleep well). We aren't out of the woods yet but we have stayed in his room all night every night for the past days.
Interestingly enough, he didn't have any foods for the 2days prior to the flight to NJ last week and the first night at the hotel - he slept 8hrs straight!! Granted, we had some travel lag, the flight was rough with lots of crying, but he's had long days before and not slept through the night. Just more confirmations that foods are upsetting his body homeostasis. Another sign was the almost perfect stool diaper change the next morning. His gut is in dysbiosis and we need to correct that or we will never get him foods, or sleep....