We’re moving !

Well I’ve lacked on updates on this page but there is good reason. I have started another blog that focuses more on Micah’s health as a whole instead of just the CHD stuff… so I am a bit sad to say this, but I will be combining both into one blog and getting rid of this one.

You can now find our CHD and FPIES/MCAS daily life updates on http://micahsfpieslife.wordpress.com (soon to be http://www.micahsfpieslife.com when i register the domain in a few weeks).

See ya there! Make sure to follow that blog!

I’m a toddler tornado now!

Wow, what a year it has been. Learning about my CHD and then the diagnosis of FPIES and a possibility of MCAS, has kept us on our toes and in and out of hospitals since the very beginning. Through it all though, I’ve grown into a handsome little man. I am 13months old now, I weigh about 17lbs 9oz today (only on the 2% chart but it’s muuuch better than it was before… more of that later).

After my last update here, a lot has happened. I spent most of the summer in hospital, trying to figure out what was wrong with me. A week long stay in early August finally made us realize how bad things were. I wasn’t gaining weight, I was diagnosed as Failure To Thrive and Malnutrition. They started me on a specialized formula on August 1st called Puramino, to supplement me on top of my breastfeeds. That wasnt so bad, but I still don’t handle it properly 100% like I should. It makes me have bad reflux all the time. My mama isn’t too happy about that but without it, I don’t grow.

After that, we tried many many different foods and they were all big fails for me with diarrhea or vomiting. I still can’t eat anything at 13mo. I am so hungry!! Mommy says it makes her cry to see me like this. But I am such a champ through it all. I smile at everyone and like to play with my brothers no matter what state I am in.

In early september, we finally saw Dr.A again for our 6mo cardio follow up. Nothing has changed since March. Things are all the same. My aorta is a big more enlarged and my PDA still not closed up, bu they weren’t worried and said we could now go with yearly appointments. So I dont go back to see Dr.A until next september or unless new symptoms appear.

We are focusing on my feeding and allergy issues now. To read more about that, go to my FPIES blog at Micah’s FPIES Life.

But to make a short version… Every bad reaction had sent us straight to the ER with vomit to shock reactions. I was lifeless in mommy’s arms after trying hemp seed milk in July. That was very scary for all of us. We now have a plan to call 911 as soon as any vomiting happens. Today is day 2 of a Moose meat trial and mommy thinks I’m starting to react. This is not looking good…

Oh I will leave you with pictures of the past few months:

6 months

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I’ve been on this earth for 6 months now. And let me tell you, it is full of bright colors and awesome things to touch and look at. I’m rolling everywhere now, wanting to be in the action. Mommy tells me I need to stop growing so fast, but she doesn’t understand I want to keep up with my big brothers. Don’t tell her, but my plan is to be walking soon. Shh!

I am now about 12lbs 7oz and 26in long, which means I haven’t gained weight in over a month (he has lost almost a lb actually). But, we finally know why I’ve been like this since birth. I have a very rare severe food allergy called FPIES (pronounced F-pies). I get very very sick from foods. My mommy has tried feeding me rice, barley, carrots, bananas, chicken, sweet potatoes, mango, etc. But my body rejects it so bad after 2-5hrs, I end up with severe vomiting for hours or very very bad bloody/muccusy diapers for days. My worst trigger is bananas. Mama thought she had to take me to the hospital that one time. My little body went into shock. But after an hour or so, I snapped out of it and seemed ok. So now, we are waiting to see a new doctor, his name is the allergist, mommy says. And then we will also see a GI to help me eat and grow bigger/better. For now the plan is just to get me to take more milk from my mommy (can’t tolerate ANY kind of formula) and hope that I start to gain even as little as 1oz here or there.

My little heart is doing okay though. We go back to see Dr.A in September. I hope she has good news for me. I want my PDA to close up so I don’t need surgery.

Health Update

(I totally forgot to update on our current situation and doc appointments in the midst of home/school chaos. Oops!)

I am now 4.5 months old, and doing good overall. Last month was rough. Mama noticed I started getting many symptoms in the 3 weeks following my diagnosis appointment (March 29th). I would get cyanosis episodes, have a cough, not feed well with sweats, etc. So she messaged the head nurse of cardiology at Children’s and she wrote it off as not related to my diagnosis and instead sent me off to see my pediatrician as early as possible to rule out anything else. So we called the clinic and demanded an appointment with our doctor, Dr. A. Turns out she only works Thursdays and Fridays, and next appointment available wasn’t until 2 wks later when I already had an appointment scheduled for my 4mo visit. Sooo, they sent us off to see another very good pediatrician there, on April 19th at 9am.

Dr. E saw us that morning, and mommy discussed all my symptoms with her. She was very concerned. Said everything she mentioned was either 1 of 3 things possible. 1) something with the lungs, 2) seizures, or 3) a much bigger CHD (Tetralogy of Fallot/TOF) that was misdiagnosed.. So she ordered us to go to Children’s ER that same day and get another EKG and echo redone, and an EEG for brain activity. She wanted answers and fast, because TOF requires surgery and soon.

Mama left the appointment with Dr E with tons of concern and questions about what was going on with me. She was kind of sad that I had to go through all this… We came back home, had lunch, a little nap and left for the hospital around 4:30pm.

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After a long 7 hours of being hooked to a pulse ox monitor (showing oxygen levels decreasing to 92, while hanging around 96), and then a lung x-ray (I don’t know if you’ve ever seen this machine they use for babies but it is heartbreaking to see them in that position in pain/fear), and then blood tests to rule out infection, and finally a long EKG, they came back to our room around 12:45am and said that everything came back normal and they didn’t see the need for an EEG or echocardiogram, and to go see the pedi within the next 2wks or to come back if things got worse and they’d change their plan of attack. Mommy wasn’t happy at all. I was exhausted, poked and prodded for hours and they did not want to do the tests that had been ordered. Got back home around 1:30am, completely knocked out and managed to have somewhat of a night’s sleep.

The next morning, she called the clinic again and left a message for Dr. E… 2 days later, Dr. A called back and asked what had happened. Said we’d talk about things on the 29th when we’d see her again.

April 29th came along and baby boy was still getting symptoms that were worrisome. And at his weight check, it was said that I was way too small for my age and not gaining enough. I weighed about 11lbs 9oz, which put me at the 0% line for weight-for-age chart. I hadn’t gained weight in 3wks either as mama had done weight checks at home with a baby scale. So they decided to put me on formula supplements and because I react to dairy and soy, I had to have a special prescription for Neocate for a month and come back a week later for another weight check. She did not have time however to discuss my visit at the ER… so I guess she would at the next week’s visit.

(I managed to get him a can of Neocate that same day, not realizing that if I had no access to the govnt’s health care, I would be spending 52$ a can!)

So on Friday, mommy and I went back to see Dr. A, and had a weight check. I am now up to 12lbs 4oz, back on the charts at 1%. Yay! Oh and I’m also 24.75in tall, about 20% for height. As we were about to leave, Dr.A said “Oh, I also want to tell you something before you leave”… So mommy sat me on her lap and Dr.A told us that she had a talk with Dr.E and knows about what happened at the ER, and she is very unhappy with the way they treated us. So now the plan is to send us to a private clinic and see Dr.Charles R., a pediatric cardiologist and hope that he can give us answers… Dr.A said it would be covered by the RAMQ, but mommy looked it up online and it seems only the appointment would be. If we need another EKG and Echo, those must be paid for. Don’t know what we will do now…

TO BE CONTINUED! (when we see Dr.R)

And then came the diagnosis!

At my first well visit appointment (I was 2 months old) they heard a little heart murmur and sent us to see a pediatric cardiologist at Children’s Hospital a few days later.

So, on March 29th 2016, we all, my parents, brothers and I, took a long taxi ride to the cardiology unit downtown. They did many tests on my little heart, first an EKG, then an echo and also the usual routine listening with a stetoscope… in and out of rooms we went, doctor after doctor. And then the waiting started, 30mins passed, 60mins, 90mins and then mama got worried… Everybody else had gone back in and left. We were the only ones still waiting. Something was up. That’s when we knew it wasn’t just a small functional heart murmur like my brother Sam has. Cardiologist finally came back to get mama and I and sat us down for some explanations.

Turns out I have 3 seperate issues with my heart:

  1. BAVD
  2. PDA
  3. VSD

Now you’re all like HUH right? Let me explain what those are…

Bicuspid Aortic Valve Disease (BAVD)

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A normal heart’s aortic valve opens into 3 seperate sections/leaflets. Mine, on the other hand, has two of those fused together… It narrows quite a bit the blood flow to the rest of my body. As a result, my heart needs to work twice as hard to get the blood out of that narrow opening. Eventually this can cause a lot of strain on my new little body and create other issues such as stenosis, enlargement and/or leakage. My heart is already a bit enlarged, so we need to keep an eye on that and they will fix if needed, through surgery. What does BAVD do to me, you ask? Well, I’m constantly tired, I’m out of breath easily, even doing simple things like feeding and playing with baby toys and I cough when I’m laying down and at night.

Patent Ductus Arteriosus (PDA)

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Usually soon after a baby is born, the DA closes. But mine is still open (Patent means open) and means that my aorta and pulmonary artery are still connected, making the blue oxygenated blood from my aorta mix with the de-oxygenated PA red blood. It is increasing blood pressure in my lung arteries, essentially making me breathe faster, have poor feeding habits (low weight gain, become sweaty, and trouble taking in full feeds), have a fast pulse and tire easily also. It also sometimes makes my skin look very pale and bluish from lack of proper oxygen. My mommy doesn’t like that… If it doesn’t close soon, they will need to go insert a coil on it to close it up.

Talking about weight gain issues, I am a small baby. I was born in the 42nd centile, but as the weeks went by, I went down lower and lower, until finally reaching the 1% weight curve last week. I have a doctor appointment in the next few days and I guess this will be something to discuss with her.

Ventricular Septal Defect (VSD)

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So there’s this hole between the right and left side of my heart ventricules. It is small enough to not really cause me many issues, but it is still there and if it does not close on its own, they will close it during the BAV surgery if needed…

I think that covers it all for now. If you have any questions, just click that COMMENT button and my mommy will do all she can to answer you.

Introducing… ME!

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Hi, my name is Micah Gabriel, but everyone calls me bug-bug around here. I’m just shy of 4 months old right now, so my mommy takes care of this blog for me. She said she wants the world to know more about me and my little heart… You see, I was born with CHD (Congenital Heart Disease). I have 3 specific things going on in there that shouldn’t be happening. But all that explanation is for another post. Right now, I want to tell you about myself and my family, and what you will find on here from now on.

So, like I was saying, I’m Micah. I was born on December 16th 2015, on my due date. Mommy was very exhausted those last few weeks and really wanted me to come along a few days earlier, but it just wasn’t happening. I weighed 7lbs 9.5oz and was 19.25in tall. Seems about average to most people, but compared to my 2 older brothers, I am very small… Talking about brothers, how about I tell you a few things about them too before continuing. First, there is Samuel, he is the oldest. He was born on November 24th 2008 and was 8lbs 2oz and 21in. He is a great big brother to me and always helps mommy when she needs it. Then there is Elijah, he is 3 and a half now, born on October 28th 2012, weighing 8lbs 11oz and 20.5in tall. He is my best buddy. He loves to cuddle me and make me laugh and can’t wait until I start talking and walking.

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My mommy created this blog to give CHD awareness to the world out there, and to give updates to my family and friends (that means you!) about my progress and bumps in the road. Oh, she also likes to cook very healthy meals and live in a home without chemicals so you might see her posting about that too, once in a while.

Well, it’s time for me to go have a nap right now, adios peeps! We’ll be back soon I promise and we will discuss my heart condition in further detail in the next post. XOXO