When I got pregnant again I knew that there was a 50/50 chance that our next little would have FPIES. That is a crappy thing to know while you are carrying a precious little life, you have a 50% chance of them being healthy and a 50% chance of them having a rare disease. I later learned that if either parent has any allergies (be they environmental, food, chemical, etc) the chances go up to 75%. Crap. By that point, I was pregnant and I convinced myself that one, our child would be fine. And two, if for some reason he did have FPIES, it would be easier this time around because I knew what to look for.
When Zach’s diapers started to change when he was just over a week old, I knew that look. Sticky, clingy, mucus. I wanted to cry and cuss and scream all at once. Why did my precious baby need to have this happen to him too?! Why?! I knew that mucus was followed by blood. I tested his diaper, sure enough a hint of blue showed up on the test. Blue=blood. More cussing (in my head, because there were little ones present).
This happened after an already hard day. We had gone to the pediatrician to get Zach established but also to have her take a look at his penis. When he was born there was a tight band around it and it was slightly swollen. My midwife figured that it would get better within a few days. When it didn’t she suggested we just have it checked out, probably completely normal she told us. When we got to the pediatrician’s office, the nurse practitioner who saw us, said “Hmm. I haven’t ever seen anything like that. Let me get the doctor in here.” When the pediatrician came in, she said almost the exact same thing, except “Can we take a picture and send it to a Urologist we know?” We agreed. Then they had us sit and wait in the office until they heard back, which made us a bit nervous- they didn’t want to just call us with what the urologist said.
30 to 40 minutes later, and getting a bit desperate because Emma was trying to dash out of the room and down the halls, we had read through almost all of the books in the room, and had colored quite a few pictures on the scrape paper in the office, the nurse practitioner finally came back in. “The urologist wasn’t sure either. He doesn’t think it is urgent, so you don’t need to see someone by this weekend or even next week, but sooner rather than later it needs to be seen.” Sure, we would be happy to make an appointment. Only catch was there isn’t a pediatric urologist in our area. We had to make the choice to drive 3+ hours one way or 7+ hours another way to go see someone. We chose the 3+ hour away option. We were able to schedule an appointment at the children’s hospital for the following week.
I reached out to several mom’s groups and found out that there is a urologist in our area, only 40 minutes away, that while not a ped specialist, he does see ped patients. I made an appointment with him too. We could get into see him the day before we were supposed to leave for the appointment at the children’s hospital. I figured we might be able to get some answers and if we needed a second opinion, or if surgery was really the only option, then we would keep the appointment out of town too with the specialist.
I made these appointments while on the drive home from the pediatrician’s office. Jason and I were reeling. We talked about all the contingencies and wondered what this meant. And I prayed, a lot, that most of all Zach would be just fine.
Then we got home and he pooped. Which brings us back to the mucus.
In hopes that perhaps, even though it is a probably small chance, the issue stemmed from an oversupply (because, oversupply can cause mucus and blood at times). I started block feeding.
Today marks day 5 block feeding. It took 3 days of block feeding to show a difference in Emma. My breasts are no longer full, not even a little bit, they are floppy and huge, but certainly not full. And my little man has less mucus, but not much. I am giving it until middle of this week to see a difference. I want to get through the appointments this week, but if there isn’t a change by then, I will start to eliminate possible food triggers from my diet. I really don’t want to go back on an elimination diet, I am already off of gluten, soy and because of my own allergies, dairy too. I went off of those things in hopes of preventing this very problem. I was hoping to start re-introducing foods, not take ones away. But just like with Emma, I will give up foods to keep this precious little man healthy and growing, if that is what I need to do.
While we wait to see the urologist, we have learned about ABS (Amniotic Band Syndrome) and that Zach’s issue may stem from that. Another rare syndrome/disease. Good grief why do my children like to be so “rare”? If that is the case, we are incredibly lucky that his penis wasn’t amputated in utero. Thank you God that it wasn’t! I have no idea what that will mean for the future or if there is even anything that can or should be done. Perhaps, this is something he will grow out of? Or grow into.
So now we wait…
Update: Urologist visit went well! YAY! He wasn’t sure if it was an ABS or not but in the end it doesn’t matter because he believes Zach is and will be just fine. He did say to keep an eye on things as he grows up but doesn’t believe that even that will really be needed.
It has been a year since I wrote. I honestly forgot I started this blog. Over the next week or so, I am going to post some of the things I have written on a different blog- that way everything will be together in one place.
Here is a veeeery short in a tiny nutshell recap:
Much has happened in the past year. I became pregnant again and delievered a wonderful baby boy in a (long) home birth.
When he was a week old he started having mucus and blood in his stools.
I had already cut soy, gluten grains, fish, tree nuts, and dairy (because of my own allergy) before Baby Bear was born. When I realized he was having problems I cut more foods, and more foods, and more foods, until I was on a 10 food diet. That still didn’t work.
So 8 ½ weeks old we switched him to a specialized formula called Neocate, which retails for around $55 a can. One can currently lasts us just under 3 days.
Little Cub’s issues are becoming more complex. We know she has histamine intolerance. I am certain we are now dealing with MCAS (Mast Cell Activation Syndrome) of some kind. She continues to have “chronic idiopathic hives” but they are starting to show a pattern and become less “idiopathic”. One of her definite triggers is the cold. She flushes, had mood swings of epic portions, more foods have been lost then gained recently, and the list can go on and on.
That is the nutshell for now!
I am the mother two wonderful and Rare children and am honored to be the step mama to two awesome teenagers.