Day of fishing

For anyone that knows me, they know that i love to fish, i have no idea why since a lot of times i catch nothing and have to wake up at 4am and all that, but there is something about it. Earlier this year i made a vow (apart from getting married) that i will go fishing once a month every month. Seems simple enough but with all that has been going on November wasn't looking great, but luckily i was able to get out on Nov 29th. I went down to the Niagara Whirlpool with a good friend of mine and we didn't catch anything, but it was so nice to be out there. Life felt very normal for a few hours and it felt like maybe, just maybe it will be very normal from this day on. So we fished, watched others catch fish, watched fish jump around all over the place, got cold and drove home. Nice way to spend a sunday morning.



As for Natalia, things are moving along great. She is breathing on her own in really long stretches (all saturday and sunday basically) and will be moving to the Step Down unit soon, maybe today or tomorrow. We are so happy with all this. She also is getting access to her computer and bberry so i expect that she will start telling us her side of the story sometime soon.

Sophie Update

Sophie is almost 2 weeks old, big day tomorrow as we go for her 2 week doctor's appointment. Things are good, she is above her birth weight and is eating well and sleeping at night. We got the routine down so really not a whole lot to report on the Sophie front.

Angie and I spent a number of days at Natalia's house during and immediately after the lung transplant. Martin and dad were at the hospital while I was with the girls, so it was Mom, Angie, Scarlett, Sophie and me. It was a really great 3 days during which we got to rest (Angie and I were exhausted) with all the assessment stuff and the ups and downs of trying to be parents during Natalia's hospitalization. It was nice to spend some time with the family. We have been in almost constant contact, all of us with our Blackberries in hand and seeing each other in hospital rooms and hallways. It was a very tough, but also great few days. We took pictures of the girls, and Angie and I got into our "being parents" routine and at this point we feel pretty good about things and are now able to take some naps during the day as Sophie sleeps. Our routine is like a marathon training program, we chart everything down and feed the baby to a schedule (funny, but what would you expect from a Lab Technologist and an Engineer who enjoy training for marathons and triathlons, this is what we know :)

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As you can see from the pictures there is a bit of a size difference between the two girls, Scarlett is now 4 months old and Sophie is 2 weeks tomorrow. This picture just makes me laugh. I bet they will laugh about it too in a few years. Scarlett kept reaching for Sophie like she was a toy. Haha.

So that's my update for now, things are good and we are enjoying each day as it comes and trying very hard not to worry what's around the next corner.

The call

So on saturday Natalia got the call that the lungs came in. It was incredible and it didn't seem real at all. Martin called me and we cried on the phone because the call came just in time. When I saw Martin's name on my phone, I didn't think it was good news, I actually thought he was calling for us to meet the surgeons about the living donor option. We were ready to do this, and even though there is no choice to make, it is a difficult thing to wrap your head around. But it never got to this because a donor was found. Once we got the call the lungs were assessed to make sdure they are viable for transplant and this was a very nervous time since it was so close, but it could be just a false alarm. It wasn't. The surgery started early evening and took about 10 hours. We were told that it went reasonably well but that she wasn't out of the woods just yet. I will leave the technical details to Natalia's blog at www.natandmarty.blogspot.com which is updated by a great family friend, Myles.

So over the next day we waited patiently at Natalia and Martin's house, letting the new additions to the family (scarlett and sophie) distract us from the severity of natalia's conditon and the craziness of the last number of months. But things are stable and condition has slowly been moving in the right direction and the donor lungs are working great and Natalia is breathing with them. What still blows me away is that she doesn't have CF in those lungs.... 30 years of that horrible disease have been removed.

So that's the update, but I also would like to say thank you to all donor families out there. It is the most incredible gift of all time, but one that requires someone's father, mother, daughter to pass. It makes me cry thinking about the hell another family must have gone through in order for someone on the a waiting list to have another chance at life. There are more than 4000 others like Natalia waiting to continue their lives and their lives could be changed by the extraordinary act of being an organ donor.

Thanks.
John (Natalia's brother)

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NovaLung & other firsts

So to start with Natalia was placed on a device called NovaLung this evening to reduce the CO2 that her lungs cannot get rid of. It is amazing technology that we are so glad is here and hopefully it will bridge the gap until the donor is found or until we proceed with the living donor option. All of us in the immediately family are B+, which is really good in this type of situation, me, my mom Hanna, my dad Chris, my mom's aunt Maria and baby Sophie (i think baby sophie is a little too young to donate a lobe :) We have started the assessment process at the Toronto General Hospital since it might be a great option if a deceased donor is not found very soon.

So apart from that, Sophie today had a very nice night of sleeping (we were much better as parents) and she was amazing all day today. Feeding is going really well and we had our first paedtric appointment and met our doctor. It went great and Sophie is fine. We also got some great new tips that are slightly different than we learned tought at the hospital, but overall all is well. She is gaining weight and we didn't feel quite as useless today as we did yesterday. Anyway, another busy day of ups and downs, but nothing new to this family and like always we will get through.

Can't wait to get the call.

Natalia on the list for 3 months and 12 days
Sophie is 6 days old.

John

1st nite at home

So after 3 great days at Mount Sinai Hospital they let, Sophie, Angie and I to go home. We were discharged, it took basically all day and at one point, they made us sign a form that said that we know how to take care of an infant and we both just laughed. We got her in her carseat and she just went to sleep and slept the whole way home. That was good, I had a vision of her screaming the whole way home while we sit in the evening traffic. But she was just great. We introduced her to her new home and her room. Angie was totally exhausted so I tried to do everything except the baby feeding. Overall it was our best nite yet and any problems were mostly our faults and not anything Sophie was doing. We were able to get her on a routine and the 3 of us actually all slept at the same time.

Angie is doing ok as well, still pretty beat-up, but we got her pain meds so I am sure she will be better in no time at all. The section is a serious procedure and I don't think women that have one get enough credit for what they go through. So that's about it for now, I will get the pictures organized, and post some more pics of my beautifull daughter. She makes me smile even when I am sitting at the ICU watching the ventilator breathe for Natalia (all stable).

John
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Across the street

So today I went over to see natalia for the first time since she has been moved from St. Mikes. It was tough to see, the ICU is a part of the hospital that you hope to never have to see but you are glad is there. The hospital is directly across the street and I made it there for an hour this afternoon while Angie's mom helped with the baby. I wasn't really prepared for what I saw, but I got a huge sense of relief from how professional the facility and the staff are. It gives me a lot of confidence for the tough days forward. Natalia is sedated, but can respond and I was able to tell her about Sophie and Angie being fine and that lots and lots of people are working hard to get those lungs. It was tough to see her in that state, I left after an hour and got some relief from my baby across the road at Mount Sinai. Sophie doesn't know how much easier she has made things for me and angie in her 2 days on earth (even considering that I haven't slept in almost 3 days).

Also, I was able to figure out which window is natalia's room and the 3 of us here can look at it anytime we need. So that's the update. Thanks for reading folks.
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Sophie Picture

Here she is. cute, blond and healthy. And she cries like crazy when hungry which is all the time.

John

Sophie day 2

So we though day 1 was difficult, but they kept telling us the 2nd nite is rough. Well they didn't lie. Sophie was in one of 2 states, happy eating, or crying at the top of her lungs. So basically angie breast fed non stop from 9pm till early this morning with a few minutes of crying in between. They say this goes away, I hope they are non lying about that part :). But really all is well, the milk will come the important part that baby and angie are fine, even though both might be a bit tired. I don't count, I just fetch stuff and hold baby when she is screaming.

Natalia is doing well, she had a bronchoscopy and they determined that the source of the bleeding is not as serious (or big) as they thought. She also slept well and is stable. I have not been there so I am sure to be symplifying things, but I am thinking all positive thoughts at the moment and know that the people at TGH are the best in the world at lung transplants and are working very hard to find these lungs.

Thank you for reading.

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Introducing Sophie

Hello all, today's blog is going to be all good. Yesterday was simply an incredible day, Fri the 13th at 9:43am Sophie was born. Both Angie and baby have done great. I know the majority of the readers are women so I thought you would appreciate a nice post about the new addition to our family. Sophie was born by c section (I was not prepared for what I saw by the way), but anyway, everything went smoothly and I was handed a beautifull, blond baby. She is stunning, and I know all parents say that but I am pretty sure she is a cute baby, but that's not as important as that it all went ok and everyone was safe. The people at mount sinai hospital (which is right across Toronto General where Natalia is) were great to us. Dedicated and have been with us for 24hrs providing great support to the 3 of us, highly recommend as a place to have a baby.

Anyway, the day went great, we got the breast feeding going which as a man is just incredible to see and have been up for 24hrs now. Not because of the baby, but just difficult to sleep when you worry about something, me about angie and sophie, angie about baby..... We will get better and I think sleep is on the horizon. Sophie likes to cry so far, screams actually, but it doesn't last long, almost as if checking if we are still around. As soon as she knows that we are she is fine. So all is well and fatherhood is more incredible than I thought it would be.

As for Natalia, we continue to pray. She is at the best place in the world to wait and get a lung transplant. My mom, dad and martin have been there during the visiting hours and also had a big meeting with the transplant team. I don't know exactly what was discussed since I am across the street, but the team is optimistic that the lungs are coming any time. Natalia is stable so let's keep the spirits high and I can't wait to tell all of you that the call has come. Nothing will make me happier.

John

P.S - I hope the post is coherent since I am writing it on my blackberry without any proof reading.

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Thursday morning, 4am

Not the message i wanted to share with you, but last nite things took a turn for the worse. Natalia struggled in clearing her CO2 levels and a decision was made to put her on a ventilator. She is now resting and is not in pain, so overall this is a good thing since she won't have to suffer the way she has for the last number of months. She is still at St. Michael's hospital but will be transferred to Toronto General Hospital later today where she will wait for the lungs to arrive.

So keep praying and hoping and spreading the word about Organ Donation. I am really sorry to have to tell you this, it really hurts me to write it since i know how much you all care and love Natalia, and how invested you are in her recovery. I have a strong belief that a donor will be found. Really do.

Thank you from our entire family.

CBC Does it again

Hello everyone, CBC aired the second part of the show today. It was very well done and here is the links to both parts of Natalia's Story, Part 1, Part 2. I found this one tough to watch, not easy to see yourself on TV talking about something this personal. But, the point of this is to raise awareness about organ donation and both parts do that quite well. So please forward to your family and friends and please comment and share your stories through the CBC website.

Thanks for reading.
John

Another morning

Quick update on natalia, overall she has had a few decent days. No blood in the nite and she has been able to get some sleep, not in the middle of the nite, but in smaller chunks throughout the day. I will only be here this morning and thursday since on Friday at 9am, baby x arrives. Very excited about it, but will not be able to be here and help out in the mornings (for a few days at least). So things are ok right now and we are starting Natalia's morning ritual right now, pain meds, pills, masks and physio at 8.

3 months and 5 days on the list.

2 days till Baby X arrives.

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CBC Part 2

So yesterday I did some filming with the CBC for Connect with Mark Kelley, part 2 of the story about Natalia and her transplant journey. Let me tell you, that being on camera is not easy. It also doesn't help talking about something as personal as Natalia's illness. The CBC guys were really great and made it as easy as it could be, and I am sure that with some editing, air brushing, they might make me sound coherent (maybe). Anyway, it needed to be done and let's hope that it helps people to sign their donor cards and discuss this topic with their families. So thanks CBC, doing this story for sure will save people's lives.

As for Natalia, she had a better nite and this morning looks promising so I am hoping it is a very boring day.

3 months 4 days on the list.
3 days till Baby X arrives (no name yet, so my mom and Natalia call her Baby X)

Another monday

Yet another early monday morning update. Natalia had a good nite till about 3am until the blood came again, it is happening every second or third nite. It didn't last long, but it takes a lot out of her physically and emotionally. Just not easy to cough up a bunch of blood. Since, she has been resting, not really sleeping, but just dozing off until the physio starts at 8am. Maybe today again starts rough, but is a good day afterwards. Let's hope again.

So another nite without the call, but another day for the call to arrive.

3 months and 3 days on list.

4 days till my baby arrives this friday unless the little bugger decides to turn :)

John

Weekend Update 2

Last nite was very good for Natalia, she slept through the nite, and there was no blood. So it is a good way to start the day. Not much else to report and lets hope the day continues the same way.

In other news Angie and I are 5 days away from being parents. Yesterday we spent the day with Natalia's daughter Scarlett, helping with some playing, feeding and we watched an incredible bath time. She loves her bath time, and Martin is a bath time expert.

3 months, 2 days on the list.

Weekend Update... part 1

So yesterday was a good day after the huge ups and downs of wed and thursday. The medication schedule is sorted out, pain is being managed way better which means less episodes. Last nite was looking good, but as it seems to be happening every few days, the blood came back again. We really don't know why it is happening, something is going on in there, maybe a combination of the meds, we are just not sure. So Natalia didn't sleep since 2am. I came in early am and things were stable, Erika, who does amazing physio / massage with Natalia came in on the weekend (on her free time by the way) to help. I can't tell you how much things like that mean to us at this point. Simply incredible to see people go out of their way to help Natalia. We won't soon forget things like that. So now Natalia is sleeping on the bipap and isn't in pain which is pretty much all we can ask for.

3 months 1 day on the waiting... (at the top of the list if i can add).

CBC

Hello all, just something a bit different to report. Yesterday, the CBC (canadian broadcasting corp) did a 3 part piece on Natalia. The first part of the story aired yesterday at 7pm on a show called Connect with Mark Kelley, here is the link:

http://www.cbc.ca/video/#/News/TV_Shows/Connect_with_Mark_Kelley/ID=1320739141

I thought it was really well done, Martin, Mom, Scarlett and Natalia really were naturals. The second part is coming up either monday or tuesday at 7pm on CBC NN.

Anyway, that's the update from this morning, I am with Natalia and she has been sleeping well. Today is officially 3 months on the list. Long time to be waiting for a phone call.

Sleep and a lot of it

Another update on Natalia today, yesterday was a very tough day, especially in the morning, but the day got better. Her pain is being managed better, and with some drugs to lower the anxiety, Natalia was able to sleep, she slept the majority of the afternoon and into the evening. In the evening, she was feeling good, but coughed up blood, and as a result was checked out by the ICU doctors. The tests all came back good, and she was able to stay in 6 Bond (CF wing of the hospital). I was not there last night, but martin was there all day and my parents through the night. Natalia continued sleeping through the night and most of today, something in the range of 16 hours.

So overall things look good right now, she asked me to write to keep you all up to date and thank all of you for your prayers and support.

Rough way to start the day

This morning was rough, I got here at 5:30am and natalia was awake after not getting a lot og sleep during the nite. Not long after, she got another big panic attack. It was really quite serious and scary. I could see the panic attack coming and we tried to focus thoughts, but in the end it hit her full on. Together with some great staff here, some pain meds, and a number of long hours, natalia worked through it. These attacks just show up and go away out of nowhere and we really need to get a handle on them.

Right now things are calm, she is sleeping on the bipap. So let's hope it stays like this today. If anyone that is reading has any tried and tested methods for diverting or working through panic attacks, let us know since we need to have them under control.

Thanks for reading and I will keep updating you all.

Another day

Another quick update since Natalia is not writing very frequently, yesterday was another day with some good and some bad. The morning was ok, we worked through it without any major obstacles and towards the end of the morning Natalia had her weight checked and she gained weight which is pretty awesome. So all together all the major numbers are good right now, but later in the day found out that the bottom airways are collapsed. Not sure really what this means, because we don't think she has used those parts of the lungs in some time, but it is a change in the xrays so not good. As a result of this TGH was updated with this latest development and Natalia's pain meds have been upgraded to make sure they are more steady than before. Hopefully this will make it more manageable and also it explains the reasons for the pain.

So overall things are not a whole lot different, but never a dull day here, and we would love to have a nice dull day. So lets hope today is better and more stable and we just keep going one day at a time and fighting whatever comes next.

Monday morning

So we had a tough weekend, but yesterday natalia had a great day, things for sure were better and most importantly the panic attacks were under control for the moment. She battled very hard all weekend and it really paid off yesterday. Physically, her breathing is quite good and her numbers are ok so that is good for now, but it was incredible to see what physical harm can be caused by these panic attacks, she describes it well in her blog so i don't need to go into details.

Today, she woke up in pain after sleeping in, we missed the timing of the pain medication (which we won't let happen again), but Natalia battled through it, focused on the right things and reminded herself that it is just pain and that her breathing is good and right now that is pretty much what counts.

So that is a quick update, keep praying and hoping and encourage all to sign those donor cards, speak about it and soon I will be writing from Toronto General after the transplant.

A Few Rough Days

Hello everyone, just a quick update. Natalia has had a few tough days at St. Mike's, not that the previous days were easy. Not sure what it really was about, but things seem to be getting better, so lets keep hoping that is the case. I will keep you all updated, but I have a feeling Natalia will write soon, if she is up for it. Lets hope, i like reading her blogs a lot.

On other fronts, the article about Natalia in the Toronto Star was incredible, i didn't expect that kind of coverage and response from the readers. Barbara Turnbull really did a stunning job with this, and I am sure in the process encouraged some people to think about organ donation. Not much else to report, except that i am now doing morning shifts at the hosptial, 6:30am till 10am or so. Mornings are tough for Natalia so having someone here is important and since Angie is a very very early riser (which makes me a very very early riser), 6:30am is fine with me. I come in and watch Natalia sleep for a few hours which is always nice.

Oh yeah, our baby is coming in less than 2 weeks. Incredible, can't wait.

John