Update

Ronan had an appointment this week only because his siblings had an appointment.
They wanted to weigh him too. Last week he was 10lbs 14 oz. This week his is 11lbs 8oz....wow he is doing sooo well. I honestly believe that he is doing so well because of prayer and healing by God. God is good and can do all things. My baby is like every other baby, except my older kids. Zandria only weighed this much at 6 months....Elias weighed this much at 4 months.... he is my biggest...makes me laugh...makes me praise God. They also measured him and he has 2 3/4 inches in just over a month. Still a bit shorter than my other two.
Still no enzymes, but the source cf vitamins and saline are still on the menu for him. He accepts them well and doesn't mind them, unlike a lot of babies with cf from what I understand. Ronan is a star and awesome...praise the Lord.

As I stated my other two had an appointment...to get a sweat test done. A sweat test is how they confirm cf. There are three ways to kind of tell if you have cf. One is a blood test analyzing the proteins in it that may be missing due to the enzymes in the pancreas not working well. This is what the new born screening is looking at.(I think I worded that right if I didn't please correct me)...Second is a DNA testing...they only know what they are looking for. The third is a sweat test. Patient with cf has a lot of salt in their sweat. They don't sweat more than anyone else....just saltier. For example normal sodium leaves is anything under 60. Ronan's first test was 112, his second was 106. Normal procedure is to test siblings so we got that done on Thursday. It took a while of being there, but my mother in law was there to help which was amazing. thank you. Elias like Ronan had to have two samples combined to make it big enough to test. The results got back to us yesterday....the numbers were 18 and 24...don't know which was which...doesn't really matter, we know they don't have it. Praise the Lord again.

From some of the conversations that I have had with the staff dealing with cf is that they really very rarely if ever deal with a family that has the first signs of cf in their 3rd child. Usually and most likely it shows up sooner, in other kids of theirs. They have appreciated the fact that they aren't dealing with teaching us about cf AND teaching about being parents in general. They just have to teach us about cf. Plus I don't think that they have had parents that were shocked yes, but not beyond repair if that makes sense. God is good and put us in a place and with people around us to pray for us and support us. We know that we...He can do all things...and we can get through all things. We have hope and faith and assurance that we felt almost immediately, which they were surprised at.

God is good.
Thank you for your prayers.

First time fun

Ok so my friend Jen (would put a link here but don't know how and too lazy/impatient to figure it out....she would know i should ask her) has had a blog for a while and does fun things like this....i decided i wanted to try. I have taken this long to try cause i keep thinking who is reading my blog anyway.... oh well Jen will read it and that is ok if she is the only one. so hope this works....:)

A. Age: 31.

B. Bed size: Queen. Just got a new one for christmas....wow...pocket coil is all i have to say

C. Chore that you hate: Floors. vacuuming, sweeping washing, all forms of flooring. My husband vacuums tho that just leaves the rest for me yuck.

D. Dogs: grew up with them...but i grew up on an acreage. I don't think they belong in town.

E. Essential start to your day: going to the bathroom. I have a tiny bladder.

F. Favorite color: I like black. I think it is a colour and so there for I like it.

G. Gold or Silver: Silver.

H. Height: 5’7″ and a bit

I. Instruments you play: Nope and in no way musical. Kind of wish I was but I'm not.

J. Job title: Mom. Hairstylist. Professional procrastinator

K. Kids: Three, 1 girl and 2 boys. Zandria (5), Elias(3), and Ronan( 7 weeks)

L. Live: Saskatoon, Saskatchewan, Canada.

M. Mother’s name: Linda.

N. Nicknames: Ness, Nessa, Veness, and one from when I was in grade 4....Nester, but not many people call me that anymore. Wonder did any of you sing a song when younger called Nester was a donkey? it is a Christmas song about the donkey who carried Mary to Bethlehem.

O. Overnight hospital stays: So far 3. 3 nights when I had Zandria. 3 nights when I had Elias and 2 nights when I had Ronan

P. Pet peeves: I have a lot of pet peeves, but only a couple worth mentioning on here I think. I will start with least...when the wheels are not straight when you park a vehicle, having the lid off the milk jug, and the biggest one of all...parking in front of the school my daughter goes to. The other day a truck parked perfectly so that it took up enough room that at least 2 or 3 other cars could have parked if he would have just moved either back or ahead....drives me insane.

Q. Quote from a movie: “You screw up just this much and I will have you flying a cargo plane full of rubber dog sh*t out of Hong Kong"

R. Right- or left-handed: Right.


S. Siblings: Two brothers- one just over 3 years younger and one 10 years younger.


Tastes you do not like: Raisins and apples cooked in things, oh and fishy tasting fish

U. Underwear: Yes.

V. Vegetable(s) you hate: Green beans, but I am a chicken and haven't tasted some in a while since I was younger.

W. What makes you run late: My husband and kids. I grew up always being a bit early for everything...my dad didn't believe in every being later than 10 minutes early.

X. X-Rays you’ve had: I have only broken 1 bone and that was enough to get me a lot of x-rays.

Y. Yummy food that you make: Roll Kuchken( I am mennonite), a good home made hamburger helper, and brownies

Z. Zoo animal: I have never been to a real zoo, but have seen typically zoo animals in the wild and my favorite is a Hippo. Love them. Also like wart hog and giraffe.

Wanna play along? Add your link in the comments, ’cause I’d love to read it.

my chunker

just a quick up date on Ronan

well the last i had updated he was 8 lbs 14 oz at around 4 weeks.
the next week we went to our GP and got weighed there and he was 9 lbs 4 oz.
wow hey.
this past week he got weighed at 6 weeks at the hospital again..... 10 lbs 6 oz.
yikes that's my chunker. cf kids aren't known to gain like this especially without enzymes.
they would like him to gain between 20 - 30 grams a day....he had been gaining 57 grams a day....just about 2 oz a day...that is crazy good. hope he is keeping up with this trend. but kind of afraid that if he keeps it up it will fuel my denial that he will be on enzymes yet...kind of don't think it will happen or really hoping for that, but that thought is denial.

I will keep you posted. he is getting a RSV booster this week and a weigh.

on a side note....I think I am feeding my kid formula that tastes like it was made with water from the ocean...yuck... accidentally got some in my mouth with trying to open the bottle of saline solution. just about puked....don't know how he does it.

Boys will be boys

i now have 2 boys
but Elias is showing me insight into the male DNA everyday.
i knew that you can tell the difference in genders but wow
let me make a list

* the love of wheels... whether on a car, truck, tractor, train, or bike; if it has a wheel they will like it and find it fascinating. elias even noticed when jers mom got her winter tires changed on her car...the same day she got it done...the kids is crazy about looking at tires on vehicles...i think he could walk around a parking lot and do that all day.

* love of sports. balls, frisbees, bats, and all that kind of thing. yup anything sports.

* pushing anything and everything. he pushes people with his hand with his head with his whole body. just crazy.

* rough...rough with toys... rough with people... rough with everything he touches. no matter how many times you tell him gentle.

* burping. he will force it. he will drink fast to make it happen easier. he will laugh about it. but thankfully we have a rule that it is ok to burp as long as you say excuse me and he always did. but forcing yourself to burp 7 times in a row got put to an end.

* his pants worn low. don't know why, don't know if or where he would have seen this but he likes to wear his pants low. he will even try to push his underwear down a bit...drives me crazy.

* loves his daddy. he will always choose his dad over me. that is ok with me. Jer is more of a cuddler and Elias loves to cuddle and i think has learnt that i am not a cuddler. lol


I know there is more, but can't think of them now... it think the list will still keep growing.
If anyone has anything to add or disagree with me just comment would love to hear your take on it. they fascinate me.

1 month

1 month ago i had my third baby and very well my last

it seems like forever ago

to the point that i think that he should be bigger, or maybe i just think too much about the cf and the fact that most infants with cf are small and grow slow

he is not

he is a month today

birth weight was 7lbs 12 oz

1 week old was 7lbs 2 oz

2 weeks 7lbs 7oz

3 weeks 8lbs 1oz

this week monday(which was 8 days after the 8lbs 1oz measure) was 8lbs 14oz

he gained a little more than twice what the doctors were hoping he would gain

he is awesome

one month and i am done being able to pump

Ronan takes two bottles a day with his vitamins and saline solution

up until a couple of days ago i could pump and then top up after and all was good and a miracle

not anymore

with my other kids i could never pump at all and i got over it quick

i am not a cuddly person and nursing is something that i don't mind but don't mind to give up either

i never have been able to nurse past 6 months

Ronan needs the best head start to a great immune system as possible and nursing is one of the best ways to give it a good start

i feel like i am letting him down, i know it sounds crazy but it is the way i think

his stomach gets bothered more with the formula also so i am really hoping his weight gain continues and that he can digest formula as easily as breast milk

i am not done nursing, i will continue, but i can sense the decent to formula happening

on a different note

Ronan rolled over today from he tummy to his back...TWICE.

it is crazy but he is strong

he is such a good baby.

on a totally different note again

Elias has been sick for 5 days now.

diarrhea and vomit

please pray for healing

I don't think he or I can handle much more.

The Real Ronan Isaac

We have a beautifully perfect little boy named Ronan Isaac

he looks like his brother Elias Derryk, but more like his dad Jeremy

he does not have the nasty cow lick his brother and sister Zandria Elizabeth Nettie have, but he also has less hair

he does how ever have his grandpa's,dad's and brother's colouring....yellow...they keep thinking he has jaundice...never heard of a 3 and a half week old with jaundice

he is smaller in size then his brother but bigger than his sister

he has long toes and long fingers... it has been commented that fingers don't belong on feet

he has one dimple on his right cheek just like his brother

he likes to eat...but not enough to wake up every three hours

he likes to sleep

he smiles often in his sleep

he only cries when he is hungry or uncomfortable due to gas

he likes to look at bright things like lights

he is not a fan of his car seat or of wearing hats...that is like his sister...she hated hats

he loves LOVES bum pats

he hates HATES to be naked...that includes diaper changes

he seems to really like his siblings so far

he is feisty...stated by the doctor that helped birth him...he was screaming and kicking even before his head was all the way out...hasn't changed...he lets you know what he thinks when he thinks it needs to be heard

he loves to be held and is often

He Is Perfect

He has cystic fibrosis

he will live his life differently then my other children

but we are not sorry...so neither should you be

his is perfect just like my other children

God made Ronan Isaac perfectly the way God wanted him and we can't wait to get to know more of his personality as he grows

God made him Perfect

Life as we know or knew it??!!!??

Life adding a third baby is not much different then I thought it would be. Constantly dealing with an overly helpful, independent 5 year old and an impatient loves routine 3 year old, and a great baby that likes to sleep and eat. Tired and loving it. We love our life.

Yesterday life as we knew or know it changed forever.
We got a phone call from my doctor....Ronan's new born screening had come back. His IRT testing for cystic fibrosis had come back positive. They did a second testing in the hospital that included genetic testing also. That came back positive.
I broke down. My perfect baby is flawed. NOOOOO.
Today we went and had a sweat test done to confirm diagnosis....it came back positive. We had a lot of people praying for us at that point. As I was sitting there listening to the nurses and such talking I wasn't crying for the first time in 24 hours and knew everything was going to be ok. God is in control. He loves Ronan and has a plan for him and us through this disease.

CF is a respiratory disease that is a lack of a certain enzyme in the lining of the lungs. The lack of that enzyme also leads to digestive issues also. They think this is part of the reason that Ronan is 2 and half weeks old and still hasn't reached his birth weight....but that doesn't say much...Zandria was the same way...my kids are just that way....lol.

So our life is going to change more than we thought it would. We do not know exactly what it will all entail yet....but we know that it will be a change and challenging at times. We know that the first steps will be vitamins and a saline intake. There is a CF clinic at RUH and a whole team of professionals to help make this easy on us and to show us that this is not the end of the world.

We know that we love our little boy and so does God. God has a plan and we have faith in His plan.