Back to plan "A"

So I struggled with whether or not to share this but figure there's others who have been through something similar and can relate and others who may go through this in the future...

I've been asked by a lot of our friends and family if we plan on having more children. This is a tough one. I always imagined my life with having two children. P.J. has always said he only wanted one. No biggie, we figured we'd just see what happened once we got to that point in our life.

Then we had Nash and once he was diagnosed with Cystic Fibrosis the topic of more children was brought up once again. I remember the Dr. at Children's Hospital advising us that we should really think about things before we go into another pregnancy blind. Our chances for having another child with CF would be the same, 25%. If we were to have two children with Cystic Fibrosis it would mean a high risk of them passing infections back and forth, double the clinic time, double the time spent on daily treatments etc. Our only option to ensure that we do not have another child with CF is to go through genetic testing and IVF. When we talked about it we decided that for us, having Nash was enough and that we didn't want to go through IVF or adoption. We've been blessed with an amazing little boy and we want to be able to spend all of our time and energy on him. I was a bit sad to think that we wouldn't have any more children but knew that for us, it was the right decision.

Well, then we recently found out we were pregnant. We were definitely thrown for a loop! Since meeting other CF parents I have learned that there is a test, a CVS, that can be done to determine whether or not the baby would have CF. This test would have to be done around 11-13 weeks into pregnancy and for us it would be a way to mentally prepare for what was to come. Our CF clinic arranged for us to go the Fetal Medicine Clinic to learn more and discuss whether we wanted to go this route and do the testing.  P.J. and I would have to have bloodwork done prior in order to determine which types of CF mutations we carry so that know what they are looking for. Our appointment was scheduled for today so that if we did want to proceed, we could have the bloodwork done in time to have the CVS test done.

On Sunday, I knew something was wrong. By Monday morning we went to Urgent Care and suspected that I had suffered a miscarriage. After three days of bloodwork and an ultrasound our suspicions were confirmed as I received the call last night. So here we are within a short period of time from going to finding out and being in panic mode, "Two kids in cribs and diapers!", to wrapping our head around it, "Ok, so it'll be great to have two kids so close in age", to being excited about what's to come, and then to being sad. While I know that it would not have been ideal timing, and we only knew for a short time that we were even pregnant, it still sucks.

So where does that leave things now, back to plan "A" I guess. Nash is our boy, he's perfect and we are happy and I have a new job to keep me busy! But if I seem a bit "off" over the next little while you'll know why. It's been a bit of an emotional roller-coaster these last few weeks.

Off to work I go!

So this past week Nash started at his dayhome part time as a transition week. I start work tomorrow and knew that dropping him off for the first time and then heading off to work directly after would NOT be an option as I would be a mess. Dropping him off wasn't so bad. He loves people and didn't seem too concerned with being left some place new. The tough part for me was that I wasn't able to get into the school so I just dropped him off and then headed back home to clean the house. Well, I only made it about 9 minutes after dropping him off before I started to lose it. Thank goodness I didn't have to be in public that day. I'm not really nervous about him being there, it's just a sad time to think that I've spent every single day of his life thus far with him and now that time is over. Once I got home it was such a strange feeling to be there and not have him home with me! When I picked him up and asked how he napped she told me that he napped for over two and half hours. (Out of the four hours that he was there!) I guess being in a new environment didn't bother him!

One of our last days before daycare, the Zoo with Mommy and Nana W. 

As the week went on there were no more tears shed and after I dropped him off each day I was busy in my classroom getting everything organized. The time flew by and it was great to get text messages and pictures from his dayhome provider to keep me in the loop as to how he was doing. Everyone says that it'll get easier with time, and I can see how that would, be but I'm still sad knowing that I won't have that time with him each day.

It's one thing to send your child off to daycare when they are healthy and it's another thing when they have CF. My biggest concerns about him being at a dayhome are: germs and him getting sick more often and him getting his medications. I'm also stressed with how I'm going to manage after working all day to pick him up, drive home, get him fed, bathed and an hour of physio all in a three hour window. And how are my weekends not going to be consumed with grocery shopping, making meals for the week and cleaning and still have quality time with him? How on earth do people manage all this?!?!

Follow-up on chest therapy/Man cold

So I thought I would write a follow-up on my last post in regards to chest therapy. We went to clinic a couple of weeks ago and I once again had an in-depth conversation with our physiotherapist about the whole chest therapy situation and him fighting it. It's the sides and his chest (while he is laying on his back) that are the hardest positions at this point. Our physiotherapist once again reassured me that at this age, not many families can get through an entire therapy session with a happy, compliant, child. She told us not to push it as we don't want for him to hate physio time and that we should start, and continue to, make it as enjoyable as possible which we have been trying to do. For us right now, it's a time where he gets to watch his Baby Einstein and Gigglebellies DVD's. He will sit for 30 minutes straight and watch while I do the easier three of the five positions and sometimes he will even snuggle into me or lay his head on my arm.

Nash snuggling during physio

Try holding a nine-month-old in this position for 5 minutes! 

It's hard because Nash was just sick for the first time and when it's time for physio to be the most important, we were lucky to get what we did done, which was a very limited amount (if any some days) in those two difficult positions. Did I feel guilty? Of course. Did I feel like it was my fault that he was sick? No...but it's still hard to think that maybe what I'm doing isn't enough. At a time where I am just about to go back to work (that's another story) it's stressful to not get everything done that I should, and want to, in regards to his treatment. How am I possibly going to work full-time and still manage an hour of treatment each day let alone more and more time that is required as he gets older!?

As for Nash being sick, it started off as just a slight cough.  Me being me, I stressed about it and called clinic. After describing his cough but lack of other symptoms, I was told that he should start his first round of antibiotics (Cefprozil) for 14 days. Well, the next day he woke up with a full on "Man Cold" and was miserable. Did I mention he was also teething! His cough was so bad, he was wheezy, snot-nosed and sneezing galore. It just so happened that was had an appointment at the pediatrician's office that day and he felt that Nash should be put on a Ventolin inhaler. So, after antibiotics, the Ventolin and lots of hugs and cuddles from Mommy, Daddy and Nana W. he was over everything in just over a week! We managed to get through it all relatively easy and I'm actually glad that his first time being sick was before I went back to work.

Ok, so I'm a mean mom to take his photo but how sad is this face!?!

So now he's all better and we went to get bloodwork yesterday as they said his last bloodwork showed a "slight increase" in liver enzymes and wanting to double check. I love how they try to word it so that you don't instantly start Googling and stressing! (Which I proudly have not!) Deal with it if/when we need to is how I look at it. While I was there I did a quick weight check of course! He's just shy of 22 pounds!! Again, forever grateful to live in a province where there is newborn screening, it was caught early and that we are so well taken care of! I really hope that the other provinces and states can realize how well these babies and young people are doing with the early detection and start implementing newborn screening across the board.