Tuesday, December 29, 2009

Christmas in pictures

Christmas Eve......


{Lobster Dinner}



{Cayden's Christmas Sweater!}



{Santa and Mrs. Claus came to visit}

Christmas Day





{Eggs benedict for breakfast}


{Opening presents}





{Playing with my presents}


{Christmas dinner}


{Going for a toboggan ride}


{I got a hippopotamus for Christmas}

Saturday, December 26, 2009

So much to be thankful for..

I am so overwhelmed with all the kindness our family has received since little Cayden was born.  Family, friends, and strangers offered us support, places to stay while Cayden was in the hospital, cards and gifts for Cayden, and lots and lots of help.  I feel so blessed to know these amazing people.  I used to hate living in a small town where everybody knows everybody and everyone knew every detail about your life.  Now, after facing difficulties with Cayden, I am so thankful living in this community where so many people have come together offering help and support.   Even during Cayden's birth, it was so comforting knowing each one of the Doctors and Nurses who took care of myself and Cayden.  They went above and beyond what you would normally expect.  Some even coming in on their day off  to check on me.  That is not something that you would ever find in a city hospital. 

I have also met some amazing people online in the CF community, willing to answer any question and to offer support when we need it.  They share their own journies with cystic fibrosis, giving me hope for Cayden's future.

I am thankful to Cayden's CF team.  They are so amazing!!!  They are alsways super nice and supportive, and never make me feel stupid for calling and asking all sorts of questions. 
And I am so thankful for the most amazing and supportive husband.  He is away at work, and was gone for Christmas, but he is doing it for us.  When Cayden was born and they transported him to Calgary, I asked Phil to stay with him the whole time, even in the night.  I didn't want our son alone.  Phil was the only parent in the NICU that night. He recorded some videos for me to watch of our little son so I would feel connected to him.  He then drove back to our town to see me the next day and then back to the city to spend the night with Cayden.  I know he was completly exhausted, but he wouldn't tell you that.

Most of all, I am thankful for our Cayden Boy.  He may be little, but he is so brave and strong.  It is so amazing how tough he is, and he always bounces right back.  I am enjoying watching him grow and develop his own little personality.  Even with all the hard stuff, Cayden is still the most beautiful and perfect baby.  I cannot imagine life any different!




{Christmas post coming soon!}

Tuesday, December 22, 2009

Rudolph, the Red Nosed Reindeer.....


I am trying to get into the Christmas spirit, it is just hard when Phil is gone.  So today we are listening to my favorite Christmas cd's and making london fogs! 

I just bought Cayden a new swimsuit so I want to take him out swimming, we tried it on last night, he is so cute!  I am not sure how old babies have to be before they can go swimming?  Anyone know?

Wednesday, December 16, 2009

Cayden's Clinic Visit

Tuesday's clinic went really, really well!  As usual, Cayden was an angel, even during the barium swallow.  I was really nervous about how he would do, but he did sooo well.  He had to fast for 3 hours before the swallow which is what I was most worried about.  Instead of being fussy, he slept until we had to change him into his hospital gown.  He barely even fussed when they strapped him onto the table!  When it was time for the barium he drank it up like a pro...he squealed a bit when they took the bottle away from him but I think it was because he wanted more!   The radiologist said that from what he could see, everything looked great.  yay!

After the barium swallow, we headed up to the clinic.  We saw Cayden's whole team right away and they were really happy with his progress.  Weight gain is their biggest concern right now, and they said Cayden is doing great! He was 5.09kg (11.1 lbs) and in the 25th percentile, so up just over a pound from a few weeks ago. He is also measuring 57.8cm (22 3/4'') so that's up too.

Cayden's gastro dr. seemed impressed with his progress as well.  Because of his weight gain, the Dr. slightly increased his dose of reflux medication.

Cayden also received his RSV antibody shot during clinic as well.  Most people have not heard of RSV, which stands for respiratory syncytial virus, even though nearly every child has had it by age two. It is a virus that infects the airways and lungs.  For most babies, RSV typically isn't any worse than a common cold, but for preemies and babies with chronic lung conditions like cystic fibrosis, RSV is very serious. RSV can create potentially deadly complications such as pneumonia or bronchiolitis.  Even just a little cold or cough would be so terrible for Cayden not just because of his CF, but also because of his weak and narrowed trachea. 

RSV usually happens in outbreaks starting in late fall through early spring, peaking during the winter months.  Because of this, Cayden will receive an injection of antibodies to help his little system fight off the RSV virus once a month. 

The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. It can live as long as six hours on hands and up to twelve hours on objects and it spreads very easily, especially from child to child.

You may ask “Can’t they fight it off and build up their immune system? Kids need to get sick, right?”
The simple answer is NO. Since Cayden has cystic fibrosis, the bugs do not get cleared from the lungs as easily as a baby without CF. The viruses and bacteria grow easily in the mucous and make CF patients very, very sick. If Cayden were to contract RSV, it would be very likely that he would be hospitalized and develop one of the complications mentioned above. The more Cayden gets sick, the more his lungs become damaged and scarred. . If we can keep Cayden’s lungs healthy and damage free for as long as possible, the better chances he will have.

This is also why during the winter months we have to be especially vigilant on restricting outings, and visits from family and friends.  We do not mean to offend anyone by this, we just want to keep our little Cayden boy as healthy as he can possibly be.  In order to try to prevent Cayden from getting RSV or any other illness like the H1N1 or even a common cold, our doctors recommend that all visitors follow these guidelines when coming to see them between now and May:

1. When you arrive, please wash your hands and use hand-sanitizer.
2. If you are a close relative who could potentially visit often, please get a flu shot.
3. Please refrain from coming over if you are sick and have not been symptom-free for at least 5 days, if you live with someone who is sick, or have been in close contact with someone who is sick.
4. If you smoke, we ask that you change your clothing and refrain from smoking prior to visiting, as a cystic fibrosis sufferer’s lungs are very sensitive to smoke. Most RSV sites recommend against passive smoke exposure.
5. If you are parents to child or toddler, please refrain from bringing them to our house during RSV season.

Please know that this is not meant to offend anyone, but we wanted to provide an explanation as to why we may seem incredibly paranoid with Cayden. Thank you for your understanding!


(the greatest smile of all time)



**RSV info from Canadian Lung Association and Canadian Cystic Fibrosis Foundation

Thursday, December 10, 2009

Family Pictures

We had some pictures done of Cayden last week.  They are so great!  Here are a few of my favorites:

2 months!

Cayden is 2 months already! It has definitely flown by. He got his immunizations today and did pretty good. He has been pretty sleepy, hopefully he doesn't get too fussy or get a fever. Here are his pictures today and his 1 month picture too!



Tuesday, December 8, 2009

Smiles!

Just a little video of our Cayden Boy smiling during his chest physio a little while ago! He is just so cute!

Monday, December 7, 2009

A little scare...

Yesterday we had a little scare with Cayden.... Phil was changing his bum just after I finished nursing Cayden. While on his back, Cayden started to vomit and then he inhaled it before Phil could flip him over. After that, he started screaming uncontrollably and it sounded much different than usual. He also sounded like he was choking on something. We tried putting him in a few different positions to help him cough, but he wasn't sounding any better. Phil called the respirologist on call at the Children's and they advised us to go to the emergency to get Cayden a chest xray to be sure. So off to the hospital we went...xray and blood work were all fine but the Dr. put Cayden on an antibiotic just in case. Poor little guy! He is so tough and bounces right back every time, he just amazes me so much :)




(Cayden giving me some smiles earlier yesterday morning)

Tuesday, December 1, 2009

Last 2 weeks...

The past two weeks have been especially tough. After having over a month at home with us, Phil returned to work for a 2 week stretch. It was my first time being alone all day and all night with Cayden. I was pretty nervous to have to do it on my own, but Cayden has been really good and my parents have helped out soo much. I couldn't have made it without them!

My parents care for Cayden from around 6pm until 10/11pm so I can get some rest. In that time, I am able to do a load of dishes, laundry, pump, and get a couple hours of rest so that I have the energy to be up through the night with him and the next day. I really don't know how people do it all alone, all the time.


Cayden has been an absolute angel during the night! whew! He has slept consistently from 11pm to 6:30 am most nights during the past 2 weeks. If he does wake up, it's been at 3-4am and then back to sleep. I really can't complain. I have been putting him down to sleep in our bed though, so I hope he goes back to his crib alright tomorrow when Phil comes home!


Cayden has been very, very fussy in these past few weeks. The evening was always his fussy time but it has been so much worse lately. I know all babies get gas and get fussy, but it just seems like he is in an incredible amount of pain. It starts about 15-20 minutes after eating. His little tummy just swells right up and is rock hard and he is straining all the time. His stools were also really runny and diarreah-ish. It started around the same time he started taking Ranitidine for his reflux issues. I wasn't sure if that had anything to do with it, so I called his CF nurse to see. She talked to Cayden's gastrointestinal doctor and they said that reflux medication usually helps with gas so that shouldn't be the problem but to take him off of it for a few days to see if that helps. I stopped his ranitidine but all that changed was he had bad reflux problems again. I called his nurse to let her know he was still having probles and she had me come to the CF clinic to see the doctors. They couldn't really find what was causing the pain, but they did find an anal fissure which probably was caused by Cayden straining too hard. Poor little guy! The gastro dr. suspected a c. diff growth in his tummy so they did a stool sample, urine sample, and some blood work. Because we live 1 1/2 away from the hospital they prescribed the antibiotic anyway without getting his lab results back. They also scheduled a barium swallow for his next clinic visit. So hopefully that will show what's going on with his little tummy! We were instructed to start the antibiotic if he was still really fussy that night. So, last friday Cayden started a round of metronidazole. He has taken it really well, but the gas or the pain have not let up at all. I spoke with the nurse yesterday, and all his labs came back good...yay! But, she said that we are to continue with the antibiotic just in case.

The thing I am struggling with the most is fitting in his chest physio. It only takes about 30 min each time but it has to be done ideally before a meal or at least 1hr after. It's hard to know when he will be hungry and sometimes he just is too hungry and starts crying franticly which doesn't help the gas issues. So then I feed him and have to wait at least an hour after, and by then he is usually sleeping and I hate waking him up. If I do wake him up he is hungry again! I find that I am only doing a little bit here and there throughout the day. It has been getting a little better, but it sure is hard to fit it all in.


The other struggle is giving him his sodium. We tried giving it to him straight in his mouth like his other medicines then I would breastfeed him right away to chase it down, but he throws up every time after about 15 min. We tried giving it to him in smaller, 1/2mL doses, but he still would throw it up. It's really frustrating when he throws up because he empties his entire feed, so I have to start all over again. We are now adding about a 1/2mL to 1oz of pumped milk or formula and trying that. So far it has been much better, only a couple of big throw ups!


Cayden is smiling now! It just makes it all worth it! I caught a really cute video of him smiling away during physio a few days ago. I will have to upload it. His neck is getting stronger everyday too and he is really enjoying tummy time more and more. He is pretty close to giggling, I think he kind of giggles in his sleep...it's pretty cute! He already has such a neat personality and I cannot wait to see what kind of person he becomes. He is already growing up so quickly, he is so different from when he was newborn.

And now for a super cute picture of Cayden hanging out in his chair:


Monday, November 30, 2009

Timeline of the last 2 months...

Oct 10
Cayden's Birthday! yay!
Cayden transported to NICU, Daddy goes with. Mommy recovers from surgery.

Oct 11
Mommy misses her baby and husband :(
NICU Doctors try to figure out what is causing Cayden's stridor.

Oct 12
Thanksgiving
Mom gets transported to recover in same hospital as baby!
Mom gets to see her sweet little boy! First Feed.
Still no word on what's up with his breathing.
First hair cut (for IV)
Umbilical stump has growing redness around it. Start on antibiotics.

Oct 13
ENT (ear, nose, throat) Doctor comes to look at Cayden's trachea. The camera is too big for a little baby nose. Rescheduled for 2 days at the Children's Hospital.

Oct 14
Genetic Councillor looks at Cayden and determines his chin is normal and not recessed. Because there are no known genetic problems in the family, decides against any testing.

Oct 15
No more room in the maternity ward for mom so discharged.
Bronchoscopy and Laryngoscopy at the Children's Hospital. Shows Cayden has a slight Tracheal Malasia and Subglottic Stenosis. The subglottic stenosis is causing his stridor.

Oct. 17
Cayden discharged from NICU.
Happy to be home with our sweet Cayden boy!

Oct. 19
Appointment with family Doctor. Everything good other than he lost a little too much birth weight and was not gaining despite constantly feeding every 2 hours for at least 1hr. A TON of poopy green diapers too!
Start supplementing with pumped milk and formula to give mom a break.

Oct. 22
Health nurse visit. Concern with the amount of weight lost.

Oct. 26
Visit to health unit to be weighed. Lost weight from last time. (and still eating ALL THE TIME! and always STARVING!)

Oct. 28
Visit to health unit to be weighed. Up only 50 grams.

Oct. 29
Appointment with family Doctor because of failure to thrive. NMS(newborn metabolic screen) results not in yet. Doctor mentions CF as a possibility.

Nov. 2
Dr.'s office calls us to come in. NMS results in and show Cayden is high risk for CF. Appointment made with CF clinic at the Children's Hospital.

Nov. 4
Sweat Chloride test.
Positive for CF
Meet Cayden's wonderful CF team.
Cayden admitted for antibiotic treatment for some fluid in his lungs.
Started on pancreatic enzymes.

Nov. 5
Gained 2 oz!
Started meetings with Dietician, Physiotherapist, and the rest of his team.
CPT 4x/day

Nov. 7
Discharged early due to risk exposing H1N1 to Cayden.
Home Again!

Nov. 17
First CF clinic.

Saturday, November 28, 2009

Cayden's Arrival

At the end of February I found out I was pregnant...I was in complete shock. Adding a child to our family was not in our "5 year plan." Also, I had just come off hormone therapy that put me through a false menopause to shrink a uterine fibroid that was removed in January 2009. I had been informed that it could take months, sometimes a full year to become fertile again after discontinuing the hormones. SO needless to say it was a big surprise!

(38 weeks along)
I loved being pregnant! I had a very easy pregnancy with no big complications or concerns. I never got morning sickness and felt great other than the normal back pain/tiredness during the last few weeks. We had no reason to worry and felt we were low risk, so we turned down any screening tests we were offered. We did however, find out that we were having a boy! We became more and more excited to meet him every day.
Labour started at 7:30pm on Friday, October 9. I felt my first contraction just after I had gotten off the phone with my mom. I had been complaining that I had no signs or symptoms of labour and I was getting frustrated! I started timing the contractions and they ranged from 7-10 minutes apart. I didn't worry too much about it because I expected them to be very far apart or irregular and eventually go away. I didn't even tell Phil I was having contractions yet because I didn't want to worry him or get him excited over nothing. I just finished the dishes, folded the laundry, and finished packing my labour bag. By that time, the contractions were getting a little stronger and were now around 5-6 min apart. At around 11:30pm, Phil came upstairs for bed and I mentioned to him that I was having contractions and they were 5 mins apart and 30-45 seconds long.... He was kind of ticked that I never told him but super excited and he started timing them for me. By then I was definitely having to focus to get through the contractions but I felt like I was handling them well. I decided to have a bath, which was really relaxing and after tried to get some sleep. At around 3:30am, they were 3 minutes apart and 45 seconds long but I was still feeling like I was doing well at home but decided I better call the hospital just to let them know. The nurse said I could come in if I really wanted to but said I sounded fine so I could stay at home longer. I tried to rest for another 1 1/2 hours and finally Phil made me go to the hospital! I felt fine, was dealing well so I wanted to stay home for a little more but Phil was getting worried so we went....
We got to the hospital around 5:00am and the nurse told me that there was no way I was in true labour because I didn't look like a woman in labour but she'd check just to make me feel better. She checked and I wasn't even a fingertip dilated! She did the little swab for amniotic fluid and it came out positive so she called my Dr. who admitted me and said he'd come in a couple of hours to check on me. At 7am he checked me but said my cervix was still really high and he could barely tell how dilated I was. He called another Dr. to come check me and that Dr. said i was 1cm dilated but there was a large amount of fluid between my cervix and the baby. 30 min later they came back and said I needed to go to labour and delivery because they were going to break my water and I should have the baby by noon! I was super excited because I thought that at the rate I was going I'd have the baby in another couple of days


(fun times in L & D)
They were worried if they broke my water too fast, the baby's head would drop too quickly, so they tried to control it. All I remember is them telling me there must be 10 pounds of fluid in there....sweeeeet. The Doc checked me and it turns out I was 8 cm! After that, my contractions got really intense and painful really fast. They were now 2 min and 60-90 sec long. After about two hours of this I was fully dilated and they told me that the baby hadn't dropped at all and that there was no way the baby would be able to come out this way...I would need a c-section. After that, everything happened so fast. I was told I would be put under and that crushed me. I lost focus of my breathing and the pain became so unbearable I was begging to get some drugs! That's the last thing I remember....

(First look)

I woke up to hearing my little boy 'snorting away.' I couldn't open my eyes but I could hear him. I remember Phil asking if I could see our son and I said "No, but I can smell him" We named him Cayden Phillip Henry Tuckwell. He was born at 12:25pm and was 8lbs 6oz and 19.5''. He couldn't of been more perfect!


(Cayden and Daddy)

First Post

Because I started this blog and Cayden is already close to 2 months old, I will write a few posts on what has happened so far to keep things organized!