I realized as I was driving up to have Baby Bear’s monthly blood work done, that I wasn’t dreading it this time. That fear and guilt wasn’t consuming me. I wasn’t listening to music trying not to cry. Sure, it is still horrible to know that your little one will be in pain and that you will have to hold them while the scream, but it has become so much a part of the routine of our lives that I also know how to make the “after” easier. Have a bottle ready, give hugs and cuddles, make sure to smile and wave to the nurses. These things make it so he isn’t scared after. They also help to make it so he isn’t scared when we first walk in to get the blood work again. (It is also possible that letting him and big sister run up and down the hall while we wait for our name to be called might help. Hey, you try to make two toddlers wait for an hour and a half quietly.)
What doesn’t seem to get easier, are the results. I expect his ANC to be low. I expect his white blood count to be low. I even expected his liver levels to be high. But I still hope that they won’t be. That this time we will have normal levels. Surely this time, we will be ok. I impatiently load and reload the patient portal were the results are posted. Cursing it when nothing shows up. Finally when the results are in... my stomach drops. Crap. Not normal this month.
Then I look at my precious baby boy and wonder, what is the underlying cause of all of this? Is he really sick with something else that they haven’t figured out yet? What is it? Is it terminal? Stop it! Don’t think that! Is it curable? (PLEASE let it be something easily cured!) It surely can’t be too bad because, well look at him. He’s not even one yet and he’s walking and crawling from couch to couch. Please…please don’t let it be too bad.
And then my mind settles, as it always does each month after the blood work result freak out. I breathe again and go cuddle my little man and let the blood work’s results go for the weekend. Well, mostly let it go, except for some quiet googling which leads me to post in my complex parent support group asking what other seasoned parents think, as they are often filled with wisdom and less terrifying than Google.
My babies are still here in front of me, and the future is so incredibly unknowable, so I will embrace this moment and pray that we find answers soon and if we don’t I will keep on embracing the moment.
Dear Rare Diseases and complex medical issues,
Leave my family, my children, the F**K alone!
I am so tired of not knowing what is wrong with my children. I am tired of knowing more about something that most doctors (even if that is just the name of a disease). I am tired of finding out that the only people that have open doors for my child(ren’s) issues are across the country, or halfway across the country at best.
I am tired of people, including doctors, telling me “But they LOOK so healthy…” Well, yes, they do, thank God for that and I work my butt off to make sure they stay that way. You aren’t here in the middle of the night as my child throws up over and over again. You aren’t there to wipe their bleeding butts. Or there to pace for hours back and forth with a baby that is in so much pain he can’t sleep. Nor are your here to go with me to the grocery store and be frozen in fear…what do I feed my children? What is safe? Then to brush off that fear and go and read label after label knowing that you need to soldier on and find safe food.
Now we are on a new journey. One of the immune compromised. One where masks and obsessive hand washing are going to become our new norm. Am I scared? Heck yes. I feel like I am going to throw up. Before a fever, was just a fever, and as long as it didn’t get too high then it was a helpful and wonderful thing. Now a fever means we head to the ER because Baby Bear’s system may not be able to fight things off on its own (of course that means we are in the hospital and going to be exposed to more germs- so yay all around!).
As I freaked out last night in bed, listening to my son sleep while he lay beside me, I wondered what life would bring, if I would lose him, how I was supposed to treat him…and it hit me. My son was still the same. We have been going through this for over 2 months and not knowing it. Now that we do, we can take precautions. But my son, my dear little Baby Bear was and is still the same. He is still a baby that will smile at the nurse through his tears after she takes his blood. He is still the same baby that wakes me up hour after hour in the middle of the night needing to be fed but right when I am so tired I don’t think I can handle it anymore he will smile up at me and pat my face and then finally fall asleep (or start laughing and crawl to go play). He still amazes me with how fast he is learning things. He is still my baby!
I cried to a friend of mine who also has a complex child, “This gets easier right?!” She replied with a no-nonsense, “It doesn’t get easier, you just get better at it. And so do the kids. You’re going to be ok. I promise” It made me cry, but in a good way. She was right. This isn’t easier. But I have gotten better at things. And I will keep getting better at them, our whole family will, because we have to!
I know we will fall into a new normal. Because it happens every time we get a new diagnosis. We WILL find our new normal. And that is ok.
When you become a parent you know you will make mistakes, it is human and there is a big learning curve on how to go from being an individual caring for and raising a little person. You just pray those mistakes won’t leave lasting emotional damage or that you will have saved enough to pay for a good therapist if they do (just kidding, shoot for the first one- no lasting damage!). What is horrible about making mistakes when you are an allergy parent, is that your mistake often directly impacts your child(ren) in negative physical ways. Sometimes in very serious negative ways. You now pray that your mistakes don’t cause serious health consequences or death. And sadly I am not kidding here.
The thing about it is, you are going to make mistakes. You are going to forget to read labels or think something is ok only to realize it really, really wasn’t. Allergy parents might be nearly superheroes but even super heroes have off days or get tired.
We had one of those mistakes this past week. I bought some of Baby Bear’s formula from an elemental formula exchange group, I never thought to ask if the cans were the US version or the Canadian/European version. I had not idea that there was a difference. There was, in fact, a BIG difference, the cans we got featuring French and English on the label, and contain soy and coconut oil as some of the first ingredients. Ugh. The US version does contain coconut derived products but not as the top ingredients and it does not contain any soy at all. (Even typing this I feel like banging my head against the wall for not reading the ingredient list).
For three days we fed Baby Bear this formula. For 3 days his symptoms started to come back, sleep was starting to non existent again, rashes, reflux, spitting up so much that he drenched several of my shirts, mucus in his stool, crying, not wanting to be put down, etc…. all of it was happening. I was worried he was failing his formula or the water we had gotten. Crap, crap, crap. Hubby and I were feeling the strain of very little sleep and a very unhappy baby (plus a toddler also reacting to something different too). What I didn’t realize was that he was failing his formula, just not his regular formula.
I was reaching for a new can of formula when my mama gut kicked in and whispered that I should read the ingredients. I did and was horrified by seeing “soy” and “coconut” clearly written. I rushed to the pantry and got the “new and improved” labels. No soy, no obvious coconut. I went through all of our formula and sure enough, I had 4 cans (well, 3 full cans and one empty can) of the bad kind of formula. I spent $100 on those 4 cans and now they were completely useless. I felt like a bad parent for hurting my kid and for wasting our family’s money.
Thankfully, no lasting damage was done. Now, 24 hours later, Baby Bear started sleeping again, spitting up less, being happy to lay on a blanket and “talk” to us. The guilt for hurting my little one is heavy but I am so grateful that it wasn’t worse and that we caught it after one can of this formula and didn’t miss it and continue to feed him the other 3 cans.
There are some days when by 10 am I am wishing I had a big bar of chocolate, a bath, and maybe a glass of wine to decompress from the few hours that I have already had to deal with trying to juggle two children. Or if not wine than a big glass of chocolate coconut milk!
The jump from one child to two has been more difficult than I anticipated to adjust to. Learning how to judge who’s needs are the most important at that particular moment. Trying to juggle more laundry, dishes, feeding schedules, lack of sleep, and maybe throw a shower in there and time to brush my teeth too (ah the luxuries of being clean!).
Then of course add all of the health stuff that I deal with day to day. Making sure that Little Cub gets all of her meds and supplements, making doctor appointment after appointment, calling insurance companies and fighting for things to be covered (formula, regular ped visits, upcoming hospital visits, etc), researching- oh so much researching, calling doctors offices and insurance to follow up about past calls, calling companies to find out about their processing practices or about some ingredient that could be derived from some trigger food, figuring out what food to trial next, and so much more.
Some days I look at the clock and wonder- how on earth am I going to handle the x number of hours until hubby gets home?! How am I going to handle not pulling my own hair out or screaming? How can I turn this day around and feel like a decent parent by the end of it?
I often feel guilty during these days, because a lot of the time my children are just being wonderfully typical children. They are needing things from me at the same time and when I can’t magically split myself in two and take care of them both, one or the other loses it and starts howling like the world is ending. Yes, it is true that mama isn’t as magical as you once thought, my young ones. I can’t sit on the couch and feed brother his bottle AND get what sister needs from the kitchen- RIGHT NOW!- at the same time. It isn’t physically possible…but does that make a difference to either wee one? Nope. They are tired or hungry or need a diaper change and of course that makes them want to cry. And sometimes they just want to play with me. Of course not in the same way or together- at least the two year old doesn’t want me to play with or even hold brother, when playing with her. Little brother could careless as long as someone is talking to him and making faces.
My guilt comes from feeling like I am losing my sanity and have a very short temper. Not because I can’t be in two places at once or because it isn’t perfectly typical for a 2.5 year old and a 3 month old to act in such a ways, because it is. It really, really is very typical. But because we have MUCH harder days. Days were screaming is from pain, not from frustration. Where throw up and diarrhea almost run down the walls (and sometimes literally do). Days where we have spent countless hours at the doctors office and tired small people just can’t handle anymore.
So days like today? When there is nothing really wrong but my nerves are fried and littles are just acting like littles? Shouldn’t I just be grateful for days like today? I should be and I am. But I am also sad and pissed off that I have to be grateful for crazy days that make other parents feel just as out of control. I want to be able to not feel guilty for having a hard time during a typical new to parenting two children hard day.
Update: and then sometimes you later learn that part of that hard day with the toddler was actually her having a reaction build up. Pooping twice during the day, flushing all day, behavioral swings, hives that weren’t very responsive to meds, new-to-her rash on her bum that is quite impressive and painful looking, over sensitive to stimuli, etc… Oh well, I guess things make a bit more sense now.
Just before bed the reaction started. Instead of laying on my lap, Little Cub wanted to lay on the floor. She started saying her legs hurt. Then, she asked to go lay down in our big bed and snuggle, but as she got up to go she was limping, and saying “ouch, ouch, ouch.” My heart sunk. I knew what this meant. A reaction. My mind raced what could she be reacting to this time? I reviewed all of the food she had eaten that day, all of the things she had done. Nothing. Nothing stood out as a known trigger. Then my mind whirled to could I do anything to stop this reaction? I quickly grabbed her cup and put in a dose of her antihistamines. “Drink down your juice, honey” I asked, probably with more than a hint of desperation in my voice. Sometimes, just sometimes, if we can get the dose of antihistamine in her a reaction will stop or be less severe.
She lay in bed she kept begging for an ice pack. The first few times I told her no, it was ok, just lay down and mama would rub her legs. But it wasn’t enough. She kept begging. I worried that an ice pack wouldn’t help and would actually throw her over the edge histamine wise, since she reacts to cold with hives. However, it is hard to say no to a toddler in pain, so I went and grabbed an ice pack and wrapped it up in a receiving blanket. She made a small sigh of relief when her legs hit it. A few minutes later she said, “I have poopies mommy,” my heart sank more. Little Cub only goes poop every 3 to 4 days normally and then has to concentrate very hard to get poop to come. It is a process and at the end of each time we cheer for her and the “poopies.” For her to go poop without any straining or even any indication that she had to go… it only cemented the fact that a reaction was happening. I picked her up and went and changed her. Then we went back to the ice pack. It still wasn’t enough to make her truly comfortable but after about 45 minutes of her moving her legs and feet back and forth on the ice pack, me rubbing her legs, cuddling her, giving her space- whatever she needed at that moment. She moved the ice pack away from her legs and clutched it to her chest. Sighed again and was asleep.
My brain wouldn’t let me go to sleep as I kept thinking, what changed did we have? What new food? What old food that we thought was safe but might not be safe anymore? I cooked with our cast iron pan tonight- maybe that was it? Finally, I dragged myself to sleep. Only to have Little Cub wake up crying out two hours later. She was nearly inconsolable, mumbling and not making sense. Last time this happened, I wrapped her feet in wet paper towels and that helped some. This time, I tried to find wash clothes but since I didn’t have any luck (dang giant pile of clean clothes yet to be sorted), I grabbed a small towel and another bigger towel. I soaked the small towel in cool water and squeezed out the excess. I rushed back to Little Cub’s bed with her crying and moaning, tossing and turning, trying to find a comfortable position. I put down the big dry towel and then grabbed both of her feet and legs and wrapped them in the damp towel. She sighed “that good, that good mama,” tears still making their way down her cheeks but no longer activity crying. After a minute or two I asked if she wanted to lay down. “Yes, yes. Ok” And she laid down her body finally releasing some of the tension. Within moments she had fallen back to sleep. I got another clean towel and placed it over her legs so the damp towel wouldn’t get her covers all wet and then covered her up.
A couple hours later she woke up moaning again, this time all I needed to do was go over and tell her I was there, and remove the sodden mess of towels.
That was a very mild reaction. Yet, it was exhausting none the less. I wasn’t sure if we were going to have a mild reaction or if it would escalate to something more. I am never sure.
The next day, we are often hit with the behavioral reaction, today is not any different – a hummingbird that loses her temper at the drop of the hat, that cries equally quickly, that runs into things, that hits or hurts others not realizing that she is hurting people, that runs around in circles laughing a sort of manic laugh, who’s eyes never quite seem like they can focus on anything, just to name a few of the things that happen. Again, that is the “good” version of behavioral reactions.
Baby Bear’s trial of Neocate formula was going well. Things were looking better and he was acting like a “typical” baby. Laughing, babbling, and only crying when appropriate. I was beyond elated. I suddenly understood what it was like to have a “typical” baby.
The only symptom we were having issues with was constipation. Turns out that it is very important to put water in a bottle first and then put the formula powder in, otherwise you will have a concentrated version of the formula which will cause constipation, especially in a baby just transitioning from breastmilk to formula. I am not sure if this is true with any other formula but it is with Neocate.
We had a few great days. We even had the chance to go out to the local putt putt golf course and have some playtime as a family. Baby Bear didn’t want to be in the carry but just wanted to be held and see what was happening, so I spent the time playing “soccer” putt putt. We laughed and I felt like this giant black cloud that had been surrounding us had lifted and the sun was finally starting to shine down.
And then everything changed again.
Baby Bear started crying more. Then he started screaming again. He became paler and paler. Reflux came back with a vengeance. He was still constipated but when he finally went it was full of white mucus globs. He was puffy looking and looked dazed and out of it. I broke down and lost it. How could my baby be failing this formula? I had heard of it happening but it just couldn’t be happening to us! Where would be go from here?
In my panicked and emotionally broken and raw state, all I could do was imagine losing my baby. I wept for hours with my husband patting me on the back. I had reached my breaking point.
I searched my mind for anything that had changed…anything! The only thing I could think of was the water we were using. Water?! Could that possibly be the problem? I had, again, heard of children reacting to certain kinds of water (processing plants use a lot of corn products which can cause major issues for children who are extremely sensitive to corn), but could that really be it?
I went back to boiled water. I also decided that it was time to get some help. I planned a visit to see my family 3+ hours away. I needed to be around people during the day. I needed someone to help give me perspective and tell me- Yes, that is a typical baby reaction or No, that is not typical at all, we need to see a doctor ASAP.
A day on the boiled water and he started doing a bit better.
Two days on it and he had stopped screaming.
Three days on it and you couldn’t tell there had been anything wrong. He was a smiling and laughing baby again.
Water was our issue. Mineral water and spring water were BAD. Distilled water or boiled water was better. Reverse osmosis water? We need to give that one a trial.
On day two of the boiled water trial, drove down to see my family and made an appointment with the family practitioner who we adore down in that area. She is wonderful, supportive, and will listen. She won’t pull her punches though or sugar coat things, which is a good thing. But she will also be more than will to tell me if she doesn’t know something, which is a very good thing!
We sat in her office on some big couches, we were the last patients of the day so we had the place to ourselves and we talked. We talked for an hour and half. It was so nice to be validated as a parent. Told that I was doing an impossible job but that I was doing it and doing it well. Told that, No, I was obviously not crazy and that while she might not understand what was going on or even know how to help us there WAS something and something serious going on. I breathed with relief.
She checked Baby Bear over and noticed that his pupils were not responding to light stimulus. Crap. At times his eyes had looked different to me but I had thought that it was just my imagination playing tricks and when your kid is screaming and pooping blood and mucus, well, his eyes are not something you focus on. She gave us the number to a pediatric ophthalmologist and said she hadn’t ever seen anything like that before when a child could obviously see.
Still, despite this new shock and possible visual issues, I was still relieved that my baby was starting to act happy again. That we weren’t failing formula. Thank God!!! The problem with his eyes? I have no idea what to think about that, so that is a problem for another day, when we can get in with the specialist.
Update: by the time we saw the specialist, Baby Bear's eyes were back to be responsive. The only thing we can think of is that it was yet another kind of reaction for him. I guess we will have to wait and see how he reacts in the future.
When I got pregnant with Baby Bear, I knew that there was the possibility of allergies, of FPIES, like with Little Cub. I prayed they would be simpler, easier, one or two foods tops. Him being worse, well that couldn’t, wouldn’t happen. Not to us.
Something that never entered my mind was that I wouldn’t be able to breastfeed him. Nursing was one thing I was good at. I had an abundant supply, an oversupply actually, of milk. I made chunky babies from my boobs. It was like magic. It was my superpower! When sick, mama’s boob was a cure-all! Pinkeye – BAM gone! Diaper rash – Pow! Ear ache – Zap! Throwing up and can’t take anything else…There’s a boob for that! It was the one thing I could control and do for my child when everything else in the world was out of control with their allergies.
So when I nursed Baby Bear for the last time in the doctors office yesterday, holding back tears (not well, mind you). I couldn’t believe we had gotten to this place. How could all of my work to keep him safe and fed and happy, be failing?! How could I have failed him? I had cut and cut and cut foods. I could cut more, I told myself. But in truth I couldn’t, my body and emotional state needed the possible quick fix and true help that formula could bring. I was a mess emotionally and was struggling with out having much of a support system. Baby Bear’s health was failing, rapidly. Caring for one child with special needs was hard, caring for two? I was drowning. Formula was a life preserver to help me be the mama that I need to be for both my very special children and the possible healing that Baby Bear so desperately needed. Already his doctor was referring us to the Children’s hospital, talking about seeing a team of specialists and getting scopes. If the formula helped, we could postpone that trip- for now at least.
This time around, at least I know it isn’t actually me he is allergic to. I didn’t have a doctor telling me that my baby was allergic to me. I had a doctor that had been fully on board with me trying to do an elimination diet. With trying holistic approaches and healing technics, who, in fact, encouraged it. But despite all that we tried and did, I still couldn’t get my milk to a place where it was healing him or even keeping him stable. It wasn’t me, but it was something in my milk that was making him sick. What that is I don’t know. Corn, beef, zucchini? The list is only comprised of a few more items and yet every diaper comes away positive for blood and in the last week visible blood stains the diapers. Mucus, more and more of it happens. Diarrhea. Reflux. Spitting up to full projectile vomiting. Cough and congestion that lingers from a cold. Something was seriously wrong with my baby. It couldn’t be FPIES, I told myself. It wasn’t this bad with Little Cub… thus it had to be something else. Maybe something easily fixed? But then story after story of other children who also had it this bad, and worse, flits through my mind. It could be FPIES.
My heart was, and is still in tatters. My breasts ache and every time he cries I have a let down. When he was crying today I almost unconsciously pulled out my breast and latched him on. I stopped myself before I actually did it but that is how intense, how primal, the urge is to nurse our young. I still have moments of bawling from grief so intense that I feel like I have lost a limb. That my heart is missing. That a part of me that was “mom”, or the mom I had imagined I would be, is gone.
I know that will change. I know that my bond with my littles will be special still. That my love for them won’t go away or even vaguely diminish. But this is a loss, plain and simple. It is also a healing, but for now I will honor that loss and know that I will be glad of the healing soon enough.
Parenting is all about sacrifice, for a “crunchy”, hippy mama that used to believe that “Breast Is Best,” this is a pretty big sacrifice. But I would give up more to keep my little man safe.
Plus, when your little smiles up at you when you are feeding him, be it at your breast or from a bottle, it is hard not to feel like you heart is lifting out of darkness and know that everything will be, has to be, ok; because how can a smile that wonderful be anything but a good thing?
Baby Bear has been having increasingly worse mucus and blood in his diapers over the past two weeks. The “seediness” of his diapers is decreasing and more diarrhea like consistency is increasing. In the past few days he has been getting increasingly more fussy and uncomfortable. Yesterday, he allowed me to put him down for one nap, otherwise he would scream his small little head off, I held him all day. Even then he fussed and nursed continually. This wasn’t working. Not only am I touched out and stressed but poor Little Cub is reacting to Mama being grumpy, not being able to play with her, and having to deal with a screaming brother all day.
People keep telling me that everything I am seeing can be normal, that I am worried about nothing or to not stress about things yet, and to give it more time. I remember those same statements being said with Little Cub too. And they are true. Yes, mucus can be totally normal (or on a range of normal) for babies. Blood can be normal too. Fussing can and is normal. Eyes swelling up and congestion- all normal. But when you combine them all together? Not so normal.
It is possible that I am reliving more of the trauma that we went through with Little Cub? Yes. Perhaps I am seeing things where there is nothing wrong. It is possible. But my mama gut is telling me that isn’t the case.
The time has come to try an elimination diet. Time to figure out what was making him sick. Today, I start that diet. Ugh.
Last night I ate the last of my Enjoy Life chocolate chip cookies (top 8 free), I had chips, I drank chocolate coconut milk. I basically enjoyed a few things that I won’t be able to have for…well, I don’t know how long. It might be a week or it might be several years depending on how long I nurse this little man. It felt like my last meal.
I dread this diet. Being hungry and wanting to eat food you personally can eat but that makes your little one sick is just not fun. It is a pretty big sacrifice. But isn’t that what parenting is all about? Sacrifice, pain, hardship all mixed in with brilliant, priceless, wonderful times that fill your heart with so much love you had no idea that a human body could love so much.
So here’s to grass-fed beef, eggs, olive oil, salt, potatoes, zucchini, chard, a little bit of corn, and some yet undecided fruit or two, which will be my diet for the next week or two. Then if things are looking better I will start adding food back in. If things are worse, then I will switch out some items and try again.
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.