Dear Family and Friends,
I miss you. I miss you all very much. I miss visiting, I miss dinners out, play dates, walks, outings, lunches, etc. It's not like I lived a crazy social life in the days pre-Ryan, but once Sadie was 2 we did start getting out much more - both as a family and individually. I miss my Grandparents. They live so close, yet we never get over there. I miss the Sarnia family - it's impossible to go that far for a visit so we haven't seen most of them in almost a year.
Thank goodness for smartphones and facebook - my reliable links to the outside world, although you really don't get the full picture from texts and fb. Phone chats are sparse because bedtime creeps up very early when there's a new 5 am feed thrown in the mix. Making plans is next to impossible - and if plans are made, they're often cancelled for an unforseen reason - a tube being pulled out, or someone coming down with a cough or the sniffles. I'm looking forward to the nice weather when hopefully some outdoor playdates can be made - both for the kiddos and for the grown ups (patio anyone!?). The only problem is that you might have to come our way since getting away is pretty difficult.
So please friends and family - continue to be patient with us and our lack of communication. If we missed your birthday/anniversary/birth of your baby/shower/(insert special occasion here), we're sorry - and we hope to start making it up once Ryan becomes a little stronger. We thank everyone for sticking with us through this tough year.
xoxo
Tuesday, March 19, 2013
March 19. MVPs
I can't go to bed without giving honorable mention to the MVPs of Team Ryan this week. My parents. On Monday morning while I was putting Ryan down for his nap after his 5 am feed (which he now takes by sippy cup), I heard my most feared sound. A cough coming from Sadie's room. Then another, and another. Once he was asleep, I went to check on her, and sure enough she had that 'kid that has a cold' sound. We went into infection control mode, didn't even change out of our pjs- she even wore a mickey mouse mask, and we headed to my parents. It sucks on a lot of levels. A) it disrupts their lives and exposes them to the cold, b) we miss her terribly while she's gone and can't take care of her like parents should when their kid is sick. c) she doesn't get to sleep in her own bed when she's feeling crummy. On the other hand, she's super happy hangin' with Grandma all day and she's getting way better care than she'd get here! I'm hoping that this 'germ lockdown' won't have to last forever - just the next year or so. Ryan's just been doing so well lately I would hate for it all to come to a halt because of a cold. Hopefully we caught it on time. So Thank you parents, for bailing us out yet again. I'm sure Ryan would thank you if he could. Hopefully his 'thanks' will come in the form of avoiding this cold.
Saturday, March 16, 2013
March 16 - This one's for the ladies...
Big news ladies... My boobs are mine again! This is the end of day 2 of no pumping! (Men if you're still reading, I warned you!)
I have mixed feelings about being done. The first feeling I have is anxiety that now Ry isn't getting those magical immune boosting antibodies that are in breastmilk. Next feeling is relief because I'm not obligated to do it anymore. Next is disappointment that I couldn't make it to my original goal of pumping until August (when he'd be a year corrected). The last feeling I have is energy - If I sleep, I no longer feel like I'm out of gas half way through the day. I did my best - better than many thought I would, so I have to take it for what it is. He's been around for 11 months, Sadie breastfed for 10, so in a way they're even. Another weird feeling is that before, when I was pumping more regularly, his crying drove me NUTS. Now, it (usually) drives me less nuts. I think that maybe it drove me nuts because I wanted it to stop. Immediately. Normally, if you're breastfeeding and your baby is crying like crazy, you give them boob and they stop. I had the feeling of wanting to do that, but because he couldn't eat, I couldn't do it - therefore crying would not stop immediately and I felt helpless, frustrated, and often very emotional about it. That feeling comes back sometimes if he's super fussy, but I'm noticing I have more patience for it (if I'm rested and we've had a good day). So for all the moms and moms to be - don't let anybody pressure you in to doing anything - do what is right for you, your body, and your sanity. Looking back, would I change anything? Not really. Like I said, I tried my best, and it was impossible to pump the recommended 8 times a day for 20 minutes. That's 160 minutes per day. By the end I was only doing 3 times per day, but that's still an hour out of an already very busy day. One more bonus of no pumping: Guilt Free Wine. My timing sucks though because Scott and I have made a deal that to save money we weren't buying wine for a month. March 18 is the last day of the 'challenge'. A happy Monday it will be. Cheers.
P.S. Thanks for all the kind words, emails, etc. after my last few posts - wasn't sure how many people were still reading but it's nice to know we've still got the team behind us.
I have mixed feelings about being done. The first feeling I have is anxiety that now Ry isn't getting those magical immune boosting antibodies that are in breastmilk. Next feeling is relief because I'm not obligated to do it anymore. Next is disappointment that I couldn't make it to my original goal of pumping until August (when he'd be a year corrected). The last feeling I have is energy - If I sleep, I no longer feel like I'm out of gas half way through the day. I did my best - better than many thought I would, so I have to take it for what it is. He's been around for 11 months, Sadie breastfed for 10, so in a way they're even. Another weird feeling is that before, when I was pumping more regularly, his crying drove me NUTS. Now, it (usually) drives me less nuts. I think that maybe it drove me nuts because I wanted it to stop. Immediately. Normally, if you're breastfeeding and your baby is crying like crazy, you give them boob and they stop. I had the feeling of wanting to do that, but because he couldn't eat, I couldn't do it - therefore crying would not stop immediately and I felt helpless, frustrated, and often very emotional about it. That feeling comes back sometimes if he's super fussy, but I'm noticing I have more patience for it (if I'm rested and we've had a good day). So for all the moms and moms to be - don't let anybody pressure you in to doing anything - do what is right for you, your body, and your sanity. Looking back, would I change anything? Not really. Like I said, I tried my best, and it was impossible to pump the recommended 8 times a day for 20 minutes. That's 160 minutes per day. By the end I was only doing 3 times per day, but that's still an hour out of an already very busy day. One more bonus of no pumping: Guilt Free Wine. My timing sucks though because Scott and I have made a deal that to save money we weren't buying wine for a month. March 18 is the last day of the 'challenge'. A happy Monday it will be. Cheers.
P.S. Thanks for all the kind words, emails, etc. after my last few posts - wasn't sure how many people were still reading but it's nice to know we've still got the team behind us.
Wednesday, March 13, 2013
March 13
Ryan is 7 months corrected today. That means he was supposed to be born 7 months ago today. This is the age that some doctors and professionals use to assess how he's doing. The professionals I prefer don't look at this as an age, they account for the setbacks he's had along the way - in order to make sure he himself is progressing. If I get stuck in the trap of analyzing what a 'typical' 7 month old would be doing, it gets discouraging. Especially if I compare to what Sadie was doing at 7 months... she was a bit of a machine, and decided to walk at 10 months. Ryan is going to do what he's going to do. His oxygen needs have been going down, and his oral intake has been going up. Way up. We are cautiously optimistic about this new increase in oral intake - because we've seen this before. However, a few details are different this time 'round. Mainly, his decreased oxygen and the fact that his reflux seems to be better managed at this time. Feeding Ryan isn't like feeding a 'typical' baby. It's a process. Sometimes a 2 person process. He's taking his formula from a sippy cup (after trying almost every cup on the market, we've narrowed it down to 2 that have the combined 'perfect' flow). He doesn't cuddle while he eats - he sits upright in his high chair. We have a pile of toys beside us to distract him from swatting at the cup (he's not swatting at it because he doesn't want it, his hands are very busy - and they sometimes don't do what he wants them to do). He will, however finish a feed in a 'typical' time frame of about 20 minutes which is WAY better than when we would have to give his feeds through the tube which took upwards of 45 minutes, often while he wailed and squirmed around. He still has his feeding tube, and the plan is still to go ahead with the g-tube insertion - but if he continues on his streak of eating well, there's a chance that we could postpone the surgery and give him a try without the NG tube for a week or so. There are A LOT of factors that still have to come into play before that happens, and the surgery date is less than a month away, so we'll see what happens. I'm trying not to lose sleep over it but who are we kidding.
His sleep pattern is pretty good, although if I could change anything it would be his 'fighting' to get to sleep. We know when he's tired - we try to pre-empt him getting over tired, but he still fights sleep. We have a lullaby CD in his room and we each (me, the nurse, and martine) have a 'song limit' - if he doesn't give in after a certain number of songs, we switch people or give up. There has to be a better way... He used to go to sleep on his own as soon as we noticed the first signs of tired we'd put him in his crib and he'd sleep right away. He had great self soothing techniques when he was in hospital - I guess now that he's more aware and interested in the world, he's realizing that being awake is more fun than sleeping... maybe??
The Baxter thing is still weighing heavy on my mind. My ideal solution for him is that someone like Cesar (The dog whisperer) would come along, take Bax and train him to not bark at the door, and also train him as a therapy dog so that we could have him at home to grow old with us. I can't ease my mind about the fact that he'll be somewhere else to live out the rest of his days.... which are still many - he's only 5 and a half.
We've all pretty much had it with winter. Today Sadie wore her favourite summer dress on top of pants and a 3/4 sleeve shirt. She got ready to go to the grocery store wearing her summer sun hat, rain boots, mitts, and a fleece underneath her spring coat. She pretty much had all the seasons covered. Talk about an identity crisis.
Ryan's laughing video is a big hit. He was grumpy today - smiles and giggles were few and far between... until Sadie came downstairs. She was being her silly self and he thought it was hilarious. It really does make everything better to hear the sound of baby laughs. Especially the sound of a baby like Ryan laugh. I wish I could send it to some of my favourite 'worst case scenario' doctors.
His sleep pattern is pretty good, although if I could change anything it would be his 'fighting' to get to sleep. We know when he's tired - we try to pre-empt him getting over tired, but he still fights sleep. We have a lullaby CD in his room and we each (me, the nurse, and martine) have a 'song limit' - if he doesn't give in after a certain number of songs, we switch people or give up. There has to be a better way... He used to go to sleep on his own as soon as we noticed the first signs of tired we'd put him in his crib and he'd sleep right away. He had great self soothing techniques when he was in hospital - I guess now that he's more aware and interested in the world, he's realizing that being awake is more fun than sleeping... maybe??
The Baxter thing is still weighing heavy on my mind. My ideal solution for him is that someone like Cesar (The dog whisperer) would come along, take Bax and train him to not bark at the door, and also train him as a therapy dog so that we could have him at home to grow old with us. I can't ease my mind about the fact that he'll be somewhere else to live out the rest of his days.... which are still many - he's only 5 and a half.
We've all pretty much had it with winter. Today Sadie wore her favourite summer dress on top of pants and a 3/4 sleeve shirt. She got ready to go to the grocery store wearing her summer sun hat, rain boots, mitts, and a fleece underneath her spring coat. She pretty much had all the seasons covered. Talk about an identity crisis.
Ryan's laughing video is a big hit. He was grumpy today - smiles and giggles were few and far between... until Sadie came downstairs. She was being her silly self and he thought it was hilarious. It really does make everything better to hear the sound of baby laughs. Especially the sound of a baby like Ryan laugh. I wish I could send it to some of my favourite 'worst case scenario' doctors.
Monday, March 11, 2013
March 11
Hope you enjoyed watching the laughing video as much as we enjoyed making it. We've got a handful of others that are too large to upload, but it's nice to see the wee boy laughing so much. First, it was Scott who could solicit the most laughs, now Sadie takes the cake for best belly laughs.
In other news, we've been given a date for the g-tube insertion. April 8th. But, in typical Ryan fashion, we've begun an appetite challenge in order to encourage oral feeding, and he's doing excellent. He's taking more than half his feeds orally now. Not sure how long he'll last, because we've been down this road before - but, we're encouraged because he's doing well all around. His oxygen is down, his reflux is better managed, and he's actually interested in eating. Our feeding specialist didn't want to get excited because we're still in early days of this challenge, but if he continues to do well, there's a possibility of postponing the surgery, pulling his NG tube and seeing how he does. I will NOT get my hopes up. I've come to terms with the fact that he is getting the surgical tube - the NG tube has been hell on earth to deal with, and we've waited what seems like an eternity for this darn surgery date. OBVIOUSLY no one will let him have unnecessary surgery, and if he doesn't need it, we'll definitely do a happy dance, but until the actual day, we'll keep our fingers crossed. We also need to start weaning his oxygen again, and doing too many things at once never goes well. If he continues to do so well with the oxygen, we could be looking at him being off during daytime hours by June (I believe I've said that before. Oh well, good news like that is allowed to be repeated). In other news - physically he's doing ok, but we'd like to see some more action in the rolling, and sitting departments. He's getting stronger every day, but he'll be 7 months corrected on Wednesday and the 'experts' are expecting certain things to happen. Ryan will do it when he's good and ready, as he's shown us with everything else. I've started a project for his 1st birthday - hopefully I'll b able to finish it in time. It's bringing up some painful memories, but also it's providing some good perspective as to how far he has come.
In other news, we've been given a date for the g-tube insertion. April 8th. But, in typical Ryan fashion, we've begun an appetite challenge in order to encourage oral feeding, and he's doing excellent. He's taking more than half his feeds orally now. Not sure how long he'll last, because we've been down this road before - but, we're encouraged because he's doing well all around. His oxygen is down, his reflux is better managed, and he's actually interested in eating. Our feeding specialist didn't want to get excited because we're still in early days of this challenge, but if he continues to do well, there's a possibility of postponing the surgery, pulling his NG tube and seeing how he does. I will NOT get my hopes up. I've come to terms with the fact that he is getting the surgical tube - the NG tube has been hell on earth to deal with, and we've waited what seems like an eternity for this darn surgery date. OBVIOUSLY no one will let him have unnecessary surgery, and if he doesn't need it, we'll definitely do a happy dance, but until the actual day, we'll keep our fingers crossed. We also need to start weaning his oxygen again, and doing too many things at once never goes well. If he continues to do so well with the oxygen, we could be looking at him being off during daytime hours by June (I believe I've said that before. Oh well, good news like that is allowed to be repeated). In other news - physically he's doing ok, but we'd like to see some more action in the rolling, and sitting departments. He's getting stronger every day, but he'll be 7 months corrected on Wednesday and the 'experts' are expecting certain things to happen. Ryan will do it when he's good and ready, as he's shown us with everything else. I've started a project for his 1st birthday - hopefully I'll b able to finish it in time. It's bringing up some painful memories, but also it's providing some good perspective as to how far he has come.
Tuesday, March 5, 2013
March 5
Remember the lady in the elevator who said Ryan has a good set of lungs? Well, she wasn't that off-base. Ryan had his 'Complex Respiratory Care' appointment at Sick Kids where they assess his oxygen requirement. We're now continuing to wean him down. He came home on 1 Litre per minute. We then weaned him to 3/4 L, then 1/2, and today they said we can try him on 1/4 during the day and even try for periods of 1/8 while he's awake. Once he tolerates 1/8, the next step is turning it OFF for periods throughout the day. IF we can keep him healthy and free from respiratory setbacks, he could be off for the daytime hours as soon as JUNE!! I get anxious thinking about protecting him from illness (as Martine can attest to after our trip to the opthamology clinic at sick kids today). Having to wait in a very busy hallway with people coughing, sneezing, and just BEING near us made my skin crawl. The clinic is under construction so they had no rooms for us to wait in. Luckily we found a corner near the end of a hallway away from the grossness. In other good new, his eye appointment was somewhat encouraging. He won't need the torturous bi weekly exams any more. Although his eyes aren't fully vascularized yet, his vision is good, and the risk of any complications is minimal. 2 good things. Now we just have to figure out the whole eating thing.... right. The eating thing.......
Sunday, March 3, 2013
It's March!?
I don't know where the time has gone... well, I do know.... We've now officially been 'home' longer than we were in the hospital. Ryan is 10 months/6.5 months. He is mostly happy when his tummy is cooperating, he needs help getting to sleep, but stays asleep if his tummy cooperates. I also noticed that our pageviews on this ol' blog have reached over 20 000. I remember when I hit 1000 and was surprised. Thank you everyone for your support along the way.
I am writing this post through teary eyes because we have finally decided that it is probably better if we find a new forever home for our beloved dog Baxter. We had high hopes that Ryan would be doing a lot better by this point, and that we'd be able to have him back home. But with 2 surgeries looming, endless appointments and follow-ups, we just can't provide the home that an amazing dog like him deserves. Sure, he has his issues - he poops on the basement floor when he gets nervous, he jumps on visitors, but man - he was the best best friend ever. To add to the sad-irony, we took a chance on him when we got him - he was the tiniest runt of his litter, he had a heart murmer, and it was iffy as to whether he'd make it.... an all too familiar story. Well, he made it and he's awesome. Much like his new bro who he has yet to meet. That's all I can say for now.
I am writing this post through teary eyes because we have finally decided that it is probably better if we find a new forever home for our beloved dog Baxter. We had high hopes that Ryan would be doing a lot better by this point, and that we'd be able to have him back home. But with 2 surgeries looming, endless appointments and follow-ups, we just can't provide the home that an amazing dog like him deserves. Sure, he has his issues - he poops on the basement floor when he gets nervous, he jumps on visitors, but man - he was the best best friend ever. To add to the sad-irony, we took a chance on him when we got him - he was the tiniest runt of his litter, he had a heart murmer, and it was iffy as to whether he'd make it.... an all too familiar story. Well, he made it and he's awesome. Much like his new bro who he has yet to meet. That's all I can say for now.
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| Always good for a laugh |
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| One of the girls |
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| Assuming the position |
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| Loves to run |
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