This weeks update

After speaking to one of our CF nurses earlier in the week I decided to take Nash over to South Calgary Health Centre to have him weighed. On Wednesdays they have a drop-in program where you can weigh the babies and ask the nurses any questions you may have. I know that from our last visit to CF clinic that his weight has really slowed down, an average of only 8 grams/day. While I try to look at the big picture and realize it would slow down eventually, it's still hard not to stress about it. Our nurse assured me that he is doing great but for my own peace of mind I went to weigh him. Not much change:( According to their scales he is just over 14 pounds. His weight and length are both between the 10th and 25th percentile. Again, could be worse, could be better. P.J. has informed me that I am no longer allowed to weigh him unless we are at CF clinic.

On his way to get weighed

So taking the advice of our dietician I decided to try adding powdered formula to breastmilk once a day to make his calorie intake higher. The recipe to make higher calorie breastmilk simply calls for 1 teaspoon of powdered formula to 100 mls of milk. (You don't actually make the formula, just put the powder directly into the milk) So I'll be curious to see over the next two weeks, which is when we go to clinic again, if this makes much of a difference or not. 

Other than that this week has been all about rolling and learning to sleep unswaddled! Nash is rolling up a storm and even attempting to crawl. It's a pretty pitiful attempt, but an attempt none-the-less. The rolling lead to me realize it was time to lose the swaddle at night. On Tuesday night he was starting to roll over in his crib and I was afraid that if he rolled over in the middle of the night swaddled he wouldn't be able to move. When I mentioned that he was still swaddled to the nurse at the Wednesday drop-in she looked annoyed. Not so much annoyed at me, but at the fact I hadn't been advised not to do so past six weeks.

So Wednesday night we tried our first night unswaddled and I decided to go cold turkey. We already had his legs unswaddled, and one night with one arm out, so I figured just rip the bandaid off and go fully unswaddled and it wasn't so bad. He started off by half babbling/half crying. We had his "Sleep Sheep" going full blast and he had his "lovey" (little blanket/stuffed animal thingy) draped over his face and he was almost flipped onto his belly. Quite the sight! Then I lean over to look at him and take his "lovey" off his face and he looks up at me wide-eyed and smiling. I thought I was in for a long night. He finally drifted off and then woke a few other times throughout the night. He even turned on his aquarium at one point in the middle of the night and watched it until he fell back asleep. I did cave and bring him into our bed for a couple of hours but honestly, it went better than I expected. By night two, all is well. Turns out he is a side-sleeper and just loves to pull things up over his face. Sorry, these pictures are a bit grainy as they are from my cell. Hopefully he continues to sleep well and then eventually I'll be ready to move him into his own room!

Night one of being unswaddled

Great Strides Walk - Team "Cash for Nash"

So the month of May use to be a time where we would look forward to nicer weather and the first camping trip of the year with friends. This year we will look at May as a chance for us to raise awareness and funds for Cystic Fibrosis as May is "Cystic Fibrosis Awareness Month". I know that there are so many fantastic causes out there and that everyone has one or two that they usually contribute to but I just would like to show how you can make a difference, even if it does not involve donating funds.


Where does the money actually go?
Well I totally agree in doing your homework before you give away your hard earned money so here is what I've found:
Use of Funds (Taken from the 2010 Annual Report posted on the Cystic Fibrosis Foundation Page)
Programs 72%
   -Research 43%
   -Treatment & Patient Services 19%
   -Education & Public Awareness 10%
Administration 13%
Indirect Fundraising Costs 11%
Volunteer Support 4%
2010 Annual Report


So if you would like to donate to Cystic Fibrosis you can go to my: Team "Cash for Nash"  Fundraising page. We have created a team rather than doing the walk individually so if you are in the Calgary area and would like to join our team, with no fundraising obligations, we would love to have you walk with us! Here is all the info on the day:

Great Strides Walk - Sunday, May 27th
Great Strides Walk - Calgary, Sunday May 27th

*For the past several years I have also participated in the MS Walk with my sister, Barb. My sister and I will still be doing the MS Walk this year but will be doing it in Calgary as the Red Deer walk is the same day as the Great Strides walk. The MS Walk will take place on Sunday, June 3rd.

Here are a few other ways you can make a difference for children like Nash off the top of my head:
-At "Toys R Us" and "Babies R Us" they often ask if you would like to donate a dollar for the "Star Light Foundation". This goes to support many programs at Children's Hospitals around the country. Similarly, Dairy Queen often supports local Children's Hospitals.
-Children's Hospital Lotteries - Who doesn't want to win a giant house or new vehicle?!?!
-Kinsmen/Kinettes local fundraising events
-Shinarama which takes place at many post-secondary schools across the country during Freshman Week

If you are not interested in donating funds there is one more huge way you can make a difference. Discuss with your family the option of organ donation and sign your card if you feel this is something you are comfortable with. I know for myself, for years I have made it very clear that my organs are up for grabs when I am gone. So many people have never put any thought into this or just haven't gotten around to signing their card. If you do end up signing your donor card after reading all this we would love to know!

Other ways that does not involve donating funds include:
Donating your Shopper's Optimum Points!
http://www.cysticfibrosis.ca/en/getInvolved/shopperOptimuinPointsDonationProgram.php

Or you can donate your time! If you are in Calgary and wish to join P.J. and I, we plan to volunteer our time at the "65 Roses Golf Tournament" in Calgary at the Earl Grey Golf Course. Let us know if you'd like to join us and we will provide you with more information!

Thanks in advance for all your support! Karen, P.J. and Nash XOXO

The proof is in the sweat

Yesterday I had a chance to get out of the house and go for lunch with two other CF Mommies. What a great resource these ladies are! Both have a child with CF, both around 2 years old, so have been through all the things we are experiencing and more. I learned new things, made new friends and hope I can continue to seek advice from them in what's sure to be many ups and downs to come.

One thing that P.J. and I were always curious about was the sweat test we had done on Nash when they first confirmed the diagnosis. We were never flat out told what the number was and yesterday I learned where to find this number. Who knew it was right in front of me the whole time!


What is the "sweat test"? 
People with cystic fibrosis have high levels of salt in their sweat. So basically the sweat test measures the amount and if it's high it confirms the diagnosis suspected from the newborn screening.

less than 30 = normal
30-59 = boarderline
60 or greater = positive for CF

Nash's sweat test number was 96:(

Here's a picture that P.J. had taken on his phone while Nash was having his sweat test done at three weeks old. I hadn't seen this until today! Totally painless as you can see by him catching flies!

The proof is in the sweat

This is also why we have to make a salt solution and add it to breastmilk in a bottle once a day. I'm thankful that he takes a bottle as others have had to try to give it to them in a syringe, which you can imagine isn't the tasty treat they would like it to be. Nash doesn't even notice when it's mixed into his bottle. Once he gets older our dietician will give us ideas of how to make his diet high in sodium as well as fat. Friends and family need not worry about sneaking chips and candy to our little guy!

"Sorry, we're going to have to cancel"

So the other day I was suppose to go to a friend's house for a play-date. (Which of course at this age is more for us mom's than it is for our kids!) Well, Nash has had a bit of a cough so I had to cancel and I found myself wondering how many times those words will come out of my mouth, "Sorry, we're going to have to cancel, Nash isn't feeling well". 


His cough hasn't been too bad but when our nurse called on Monday she told us that if it lasts more than the typical 3-5 days that we would have to bring him in and put him on antibiotics. She also told me that his throat swab from last week (checking for bacterial infections) came back clear! Yeah! So today being Thursday I'm happy to say that he isn't coughing very much and seems to be doing well. But it's tough being cooped up in the house all week and it's been way too windy for us to venture outside for a walk.

Before I had Nash I was very much a "go-go" kind of person. Much to my husband's disbelief, I enjoy staying put but miss the social interaction with others. If someone else would buy my groceries and run my errands I would stay home much more. Some of the benefits of being stuck in the house all week: my tank of gas is lasting a long time, my house is starting to not look like a bomb went off, I managed to have a bath for the first time since he was born, and it's much easier to get two sessions of physio done in a day. The down side is...we have no groceries and I feel like a hermit!

I'm looking forward to getting out of the house this coming weekend and meeting a few other mom's (who have a child with Cystic Fibrosis) for lunch. This will be the longest that I have been away from Nash ever! Wonder how many times I'll check my phone...

Generosity goes a long way

This may just look like a backpack but it represents the kindness and generosity of others.  While attending a Clinic visit I mentioned how it would be nice to connect with someone who has recently gone through a similar journey but are maybe a year ahead of us to hear their experiences. After saying that one of our nurses left the room for a minute and came back with this backpack. This backpack was put together by a family who have a daughter with CF. In it contained a letter from the family, as well as a sheet describing all the items in the backpack and how they were useful in their first year of her diagnosis. Some items were donated by companies, some where made and/or donated by friends and family and others purchased by the family themselves. In the backpack were so many wonderful things which now, have become some of our first year favourites! I get some many comments on many of these items. Remember that, "Keep Your Damn Hands Off" sign? Yup, in the backpack. Ever see me trying to unscrew with one hand the little pill container hanging on my diaper bag when about to feed Nash out and about? Yup, the backpack! Some of the other items included: hand sanitizer that hangs on the diaper bag, his "Blink Link" soother clip, an ever-so-cute teddy bear, extra large receiving blanket big enough to swaddle him in, a book on raising a child with health concerns. I could go on and on but the point is, how generous and thoughtful was it to put together these backpacks! Thank you!!

Just a few of the items that were in the backpack 

It's also been nice to connect with this family as they have just gone through everything that we are experiencing. I can only hope that we can be of some help to families who will be going through what we did just a few months ago. That shock, and then all the other emotions that came after.

Our generosity can start with what will be the beginning of many fundraising events that we will be taking part of for Cystic Fibrosis. We are looking at putting together a team for the Great Strides Walk that will take place on Sunday, May 27th. Suggestions are now being taken for a great name!!

Pseudomonas - the "Big Bad Wolf"

Pseudomonas - the "Big Bad Wolf" 
At Nash's clinic visit last week they did a throat culture to test for different bacterial infections.  They say that typically it takes 10-14 days for the results and no news is good news. Because this is the first throat culture he's had they said they would call us either way with the results.

I'm still learning about all this stuff but basically pseudomonas is a bacterium that can cause a bacterial infection which for CF patients can be harmful to their lungs. Pseudomonas is everywhere, soil, vegetation, water etc. If a CF patient were to test positive on a throat culture for pseudomonas then they would be given antibiotics called "TOBI" to treat it.

For a long time now I've been really looking forward to taking Nash swimming and upon learning more about pseudomonas I thought maybe we wouldn't go. Well, it's our personal decision not to let this fear stop us. Let us swim! We did want to wait until he at least had his 4-month shots just to build up his overall protection while being in public places and as for the risk of pseudomonas, we will not take him near the hot tub, as it is more common in warm water, and we'll be quick to wash him off at the pool and then a thorough bath once we are home.

So today we arrived at the pool and upon seeing how busy it was I could tell immediately what P.J. was thinking.  Then he turns and says to me, "That's a lot of germs".  Well I could have hit him! I said, "I went through all this effort to get here, we're going swimming."

Nash was people watching like the best of them and although as P.J. says, he didn't do much (what, was he expecting him to do, the front crawl?) he seemed to enjoy it and I enjoyed getting out of the house and doing something besides going to a Mommy and Baby movie or going to friends' houses.

Nash and I his first time swimming

A day in the life

So some might wonder how CF plays a role in our day-to-day life. For the most part the only way it does at this time (besides my fear of germs) is in the way of medications and chest physiotherapy. (He is currently four and a half months old)
Medications:

As I mentioned before, Nash takes a half a capsule of pancreatic enzymes each time he eats. (Which right now is about 6 times a day)  We were told we could try different ways of administering these enzymes, one being with a little bit of apple sauce.  We tried that at the beginning and he didn't like it so for us, we use little plastic medicine cups and have three lined up and ready to go at all times.  We just squeeze the medicine cup, pour them in his mouth and then feed. Sometimes depending on the angle we get them in his mouth he will choke and gag and other times, with the perfect pour, he doesn't even notice. When he starts on solid foods we will then be able to put the enzymes into his food. Yeah!! We are lucky that there is a government program that covers the cost of Nash's enzymes until he is 18. Also, if we are running low, we just call the pharmacy at Children's and they FedEx them overnight at no cost to us.

Enzymes all lined up and ready to go

Enzymes already split up and ready

As for the AquADEKs (Antioxidant Multivitamins and Mineral supplement)...I curse this stupid bottle!  It is bright orange, stinks and stains everything it comes into contact with.  I have said from day one, whoever came up with this stuff obviously did not have to give it to their child.  However, Nash loves this stuff!! He would drink the whole bottle if we let him.  This bottle comes from the States as there is no equivalent in Canada at this time so we can only get it from the pharmacy at Children's Hospital.  We only have to pay the dispensing fee which for us, would be the same cost if we had to continue giving him daily Vitamin D drops. (Which we don't as there is Vitamin D in the AquADEKs) We give this to Nash in a syringe once a day but I know that others who put it directly into a their bottle or give a little bit at each feed to equal the amount needed in a day.  Once he is older there is a pill form of this so we will be done with the orange stains on everything!! I try to keep certain onsies, sleepers, facecloths and receiving blankets that are specific to when we give him the vitamins.

Nash also takes Ranitidine twice a day for reflux.  We are told that many CF patients take this and is also helps with the enzymes.  Funny enough this medication smells like mint and you would like he would like it but he scrunches up his face and gives me a dirty look every time.  He doesn't fight it though.

Lastly, we give Nash a salt solution mixed into a bottle once a day.  Again, in the beginning we tried to do a little at each feed in a syringe but as you can imagine, drinking salt water no matter how small the amount is not fun so I pump to be able to give him one bottle a day with the salt solution.

Chest Physiotherapy:

I've touched on this a bit in a previous post but here is a picture of the onsie we were given to remember where on an infant we are looking to do the chest therapy.  We use a cupped hand and do "percussion" over these areas. Right now this is approximately 30 minutes, twice a day.  We use the Baby Einstein DVD's to keep him entertained and still while we do this.  There are some areas that I can do while he is asleep and it amazes me that he can sleep while I beat away on him.  They say that for some babies/children the repetitive beat/motion is calming for them and often will put them to sleep. We are lucky that is the case with Nash and hope as he gets older he won't fight us.  If Nash were to get sick, we would have to do chest therapy approx. 4X a day.

Does this kid look sick to you? Nah, me neither!

Does this kid look sick to you? Nah, me neither! 

So today was our monthly CF Clinic visit. I half look forward to these visits as I get to hear how great he is doing.  We attend the CF clinic at the Alberta Children's Hospital. Our CF team is amazing. We have a dietitian, pharmacist, physiotherapist, social worker, two nurses and three doctors (we see one doctor per visit but there are three on the team) and that makes up the CF team. When we go to clinic they rotate through and we see them all. It ends up being a long day as we're usually there about three hours and it takes some time to get there being that we live in the far South end of the city and it's in the North. At least we live in Calgary now and don't have to do the drive from Sylvan Lake. 

At today's visit Nash weighed just under 14 pounds and it in the 25th percentile for both weight and length.  Could be better, could be worse. Overall he is one very healthy boy, well, besides that whole having CF thing:)  His lungs sound great, he's doing lots of developmental things we would hope him to be doing at this age and you know he's gaining weight when you have to hold his cheeks out of the way to do physio!

To leave the house or not to leave the house...that is the question.

So, anyone who has had kids knows how hard it is when they are young to pack them up and leave the house. Well for me, it's that as well as the fact that outside that door is the big, bad world of "germs" that I can't control.

I find myself in stores constantly looking around for those who are sneezing, coughing, etc. So, imagine the self control I had to have the day that crazy lady in Wal-Mart put her gross, smoke-smelling hands all over Nash's toy keys and then tried to put them in his mouth. It took everything in me to bite my tough, smile and say, "Oh, he's not teething yet so he just uses it as a toy" as I pulled the toy away from his mouth. At least she thanked me after for having the moment to "play" with my baby as she touched his cheek. Goodness! Well, that was the day I came home and frantically found my "Keep your damn hands off!" sign for the car seat.  Ok, it's a bit more polite than that but that's the underling message!

Available at www.mamabears.com
Thanks again Chrissy!

Nash and his keys that he "doesn't" put in his mouth. 

On the topic of germs, how many types of wipes could there possibly be?!?! Well, here are the ones I have in my diaper bag alone! (Yes, these things all exist! And yes, I have bought them all!)
-Pacifier wipes
-Toy and pacifier wipes
-Teeth/mouth wipes
-Boogie wipes
-Regular wipes for diaper changes (I like the Costco ones)

Add to that the ones I have at the house which are wipes for surfaces, again, I like the Costco ones, and the Dapple "Toy and Surface" wipes. Man, I really need to invent some other type of wipe!

Wipes anyone?

The "Pity Party" is over!

So after learning a bit about Cystic Fibrosis on our initial visit to Children's Hospital I decided having a one day pity party was enough. It was time to educate ourselves about CF and see how this was going to play a role in our lives forever.  The first thing that our doctor told us is that both P.J. and I were carriers of the defective gene. Here is a link to the Cystic Fibrosis Calgary Chapter's site that answers "Frequently Asked Questions" about CF in more detail.
http://www.cfcalgary.ca/faq.aspx

He also told us that if we were going to be sharing this information with friends and family to direct them to Cystic Fibrosis Canada website or the American version.  There is so much information on the internet that much of it is outdated.  There have been so many advances within the past 20 years that even within Nash's lifetime there could very well be a cure.  Nash also has the most common gene mutation which is good I guess as this is what they know the most about.

I will tell everyone, I am a bit naive about the whole thing as I try to stay off the internet and just go by what they tell us at clinic. I'm on a need-to-know basis. If I start searching around online I'm just going to stress myself out.  That is partly why I wanted to share this blog.  Many blogs out there tend to be negative, a way for people to vent.  While I know this is needed, I personally would like to read something more positive or just informative without getting all stressed out what may or may not be part of our future.  To me, Nash is a healthy boy who we just have to be more careful about in regards to germs and he has medications he'll have to take and physio he'll have to do and the rest...maybe we'll be lucky and avoid.

Did we know we were carriers?  No, we didn't have a clue. We both knew very little about Cystic Fibrosis and to our knowledge, had no family history of it.  Once we thought about it we each knew someone growing up in our communities (similar in age as us) who had Cystic Fibrosis and it made us feel a bit better thinking about how healthy these individuals were/are.

Were there any signs before Nash's diagnosis?  Besides his lack of weight gain there were no signs to us that there was anything wrong with his health.  Now thinking back it made sense as to why I would be feeding for hours and him just never feeling full. He would eat, spit up, eat, spit up, repeatability for hours at a time.  We were told to feed him every three hours from the time I had last started a feed. That would have been impossible! I recall in the beginning feeding around 16-17 hours a day!

In a nutshell what is Cystic Fibrosis?  Well, on that first day we were told so much I'm sure I only heard half of what was being said.  Cystic Fibrosis is a lung disease which also affects the digestive system.  With the pancreas not able to properly break down and digest food CF patients need to take Pancreatic Enzymes before they eat anything. In the first week of Nash being on these enzymes we could not believe his weight gain.  The goal is for newborns to gain between approx. 13-30 grams/day and in his first week on enzymes Nash gained 78 grams per day!!  CF patients also have a thick mucus which builds up on their lungs.  They do not have the natural ability to break this up, therefore chest therapy is needed every day, multiple times a day.  At this time chest therapy is in the form of us doing "percussion" on five different areas over the lungs with a cupped hand.  Surprisingly enough Nash doesn't mind us beating on his chest and it often puts him to sleep.

Nash fell sleep while I was doing physio on him

Welcome to the world Baby Nash!

So after much though I've decided to give this whole blog thing a shot. I'm not sure how much time I'll be able to put into it but will try my best. My reasons for doing so...I know that it's been great to connect with other parents going through a similar journey with Cystic Fibrosis and it's nice to see/read about what they are doing.  It's also great to be able to contact these parents for advice and support. I also thought that it would give our friends and family some insight as to what things we do on a daily basis for Nash to stay healthy and his progress.

I'll start with a little bit about us. My husband P.J. and I live in Calgary, Alberta. We had our first son, Nash, on Halloween this past year. After having a healthy pregnancy Nash was born 15 days early and weighed in at 6 pounds, 12 ounces. For those that know us, you know our birth story was as easy as it comes, being over and done with in 20 minutes! As my husband would say, the "Brown" side of the family has no patience. He was a bit bruised and his nose was a bit crooked as they had to vacuum him out due to a drop in his heart rate.

Just after he was born

We went home with our healthy baby only to learn when he was fifteen days old that he has Cystic Fibrosis. I will never forget that day.  We had been having some issues with Nash's weight gain. After going for a check-up when he was almost two weeks old at our Maternity Clinic I was excited to see that his weight had gone back up to his birth weight. (He had dropped to 6 pounds, 3 ounces) When I got into the dr's office she started talking about how concerned she was with his weight. Being the first appointment that P.J. wasn't able to come to, a lack of sleep etc. I began to cry, thinking it was my fault. Breastfeeding was a challenge and here I was thinking he was doing so well and to hear her be so concerned I just crumbled.  She told me to come back the following week on the Monday (this was Friday) and we would weigh him again. All weekend I felt like he was feeding well and I thought for sure he was gaining. On Monday when I went back  I was optimistic of his weight gain only to learn that he gained...nothing.  Our doctor told me that she was at a complete loss, he was eating, had lots of activity in his diaper and she then decided to refer us to a paediatrician.

Our appointment was booked for Wednesday and before we had a chance to go, on Tuesday I received a voice mail from Children's Hospital. The voice mail said that due to his newborn screening they needed us to bring our son in to do further testing. He left a name and number and when I called back and got the voice mail it sounded, in his thick accent, like he was saying he was the Respirologist on staff. I was so confused and waiting for his phone call back felt like forever.  When he did call back I was upstairs in the bedroom. He was very to the point, asking if I knew anything about Cystic Fibrosis and basically telling me that Nash had it.  He said that they normally wouldn't be calling and telling me this over the phone but that we had no family doctor on file. He told me that we needed to come in and do a sweat test to confirm but when I asked, "Is it more likely, less likely, 50/50?" his response was, "more likely".  I started crying and he put me on speaker phone with himself and one of the nurses from the CF team.  They asked if we would like to come in just to have a conversation that day as they wouldn't be able to do the sweat test until the next.  Luckily P.J. was home as his dad came from Nova Scotia to visit, having just arrived the night before. I got to the top of the stairs and bawling my eyes out, told P.J. what had just happened. We got in the car and left for the hospital, longest 40 minutes ever!  All I can say is that after being as devastated as I was, after going and talking to them that day, I felt much more at ease with the diagnosis.  I had my pity party that day and then decided to just educate myself as much as possible and take one day at a time.

Nash and I at two weeks old