We had a family meeting today. I'm like a Pavlovian dog when it comes to these meetings - I walk into the room and immediately feel like I'm going to cry. We've had some pretty intense meetings over the last 89 days. Yep. 89 days. Today's meeting was very different. We actually heard the words 'h.o.m.e' and 'discharge plan'. I can't 'say' those words too loudly, because I don't want to jinx them - but am embracing the light at the end of this very long tunnel. They would like Ryan to be home by his due date (not likely, they know that), if that doesn't happen, they'd like him home as soon as possible after the due date. Barring any unforseen setbacks (mostly infection or his eyes taking a turn for the worse), she said she would guess that it won't be more than 2 months. 1 month is best case scenario, but as we've learned the hard way, best case doesn't usually happen in the nicu. We've heard from countless parents who are close to their discharge date and something happens.
Now, for the next 2 weeks is to get the boy eating. Starting now, he's having 2 full feeds/day and on Saturday night, our nurse Karen is going to give him a bottle at one point during the night (bottle of breastmilk). I have no problem with them introducing a bottle a) because I can't be at the hospital 24/7 to feed him... I would, if he was our only kid. b) (men ignore this point) I'm using a nipple shield, so the transition from boob to bottle will be easier (they recommend this shield to these little guys to make it easier and less tiring). c) Scott can do nighttime feedings once and a while, hooray!
Ryan will most likely come home needing oxygen. This is somewhat scary, but very common and the hospital does a lot to help facilitate the setup at home. Otherwise, when he comes home, he'll be a 'regular' baby - no tubes, no monitors, no nurse (yikes!). So it's my job now to get to know his 'normal' and start doing more of his care at the hospital. He'll be 38 weeks next week, so that means he'll be 'term' so we're getting down to crunch time.
It feels scary and surreal that things have taken this turn and I can only hope they stay on this path. He's been extubated for a little over a month. I'm excited for the day that he'll be extubated for longer than he was intubated (he was on a vent for 7 weeks, so about 3 more to go).
We'll still need a lot of positive vibes sent our way - he'll need all the help he can get to get to where he can make the trip from Toronto to Newmarket. Thanks again to everyone who've helped us get to this point.
I'm listening to Sadie try to fall asleep with a stuffy nose - this is frightening because I CANNOT get sick but she needs her mommy... perhaps this may be a setback waiting to happen. If mommy gets sick, mommy can't go feed Ryan... if Ryan doesn't eat, it will take him longer to come come.... argh.
Thursday, July 26, 2012
Wednesday, July 25, 2012
July 25
Ummmm... where did July go?
We've been taking more steps in the right direction... Biphasic pressures have been weaned from 10 to 8, this is good because his high flow oxygen has been providing pressures of 5. Once biphasic can be on 5, they can switch him to Cpap. Their goal is to get him off the machine completely so they're definitely making him work. He had a full 'nutritive' feed yesterday and ate like a champ... actually, he's better at breastfeeding than Sadie was. Let's hope that continues. I ALWAYS get nervous when things are this good. Everyone else is allowed to be happy, I will stay on guard.
We've been taking more steps in the right direction... Biphasic pressures have been weaned from 10 to 8, this is good because his high flow oxygen has been providing pressures of 5. Once biphasic can be on 5, they can switch him to Cpap. Their goal is to get him off the machine completely so they're definitely making him work. He had a full 'nutritive' feed yesterday and ate like a champ... actually, he's better at breastfeeding than Sadie was. Let's hope that continues. I ALWAYS get nervous when things are this good. Everyone else is allowed to be happy, I will stay on guard.
Sunday, July 22, 2012
July 22... Pictures!!
We've had a good week. We've now moved to 5 mins of 'nutritive sucking' once a day, and Ryan is on high flow for 1.5 hrs in the morning and an hour at midnight. The thought is to try and get him on high flow for 3 hrs in a row starting next week, and doing 2 feeding sessions. So far, he seems to like eating the proper way. It's a long way until they can remove his tube, but we're on the right track.
His eyes are still a concern, so he'll continue to be monitored weekly. Not that he's close to being able to, but he can't be moved to Newmarket until his eyes are no longer an issue because if he needs surgery it's only done at Sick Kids. Cross fingers for no surgery!
In other news, we continue to be in contact isolation - but we were able to move to a new bedspace in a more quiet corner which is nice. Ryan has the 'common' strain of the bug, which means he got it from another baby. Bummer. Since we've started the feeds, my hospital visits are becoming much longer, it'll almost be like commuting to work since I'll have to be down there for 2 feeds. It'll be an adjustment for everyone once again.
Here are some pics of what we've been up to...
**No wonder I don't put pictues up often, this took me over an hour and a half!! Our ol' laptop has a hard time with all the pics
His eyes are still a concern, so he'll continue to be monitored weekly. Not that he's close to being able to, but he can't be moved to Newmarket until his eyes are no longer an issue because if he needs surgery it's only done at Sick Kids. Cross fingers for no surgery!
In other news, we continue to be in contact isolation - but we were able to move to a new bedspace in a more quiet corner which is nice. Ryan has the 'common' strain of the bug, which means he got it from another baby. Bummer. Since we've started the feeds, my hospital visits are becoming much longer, it'll almost be like commuting to work since I'll have to be down there for 2 feeds. It'll be an adjustment for everyone once again.
Here are some pics of what we've been up to...
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| hello. |
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| Walking on the boardwalk before mommy heads downtown. |
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| Snuggle in a new sleeper. July 5 |
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| Bathtime! July 10 |
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| July 12 |
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| Ryan - 4 lbs 7 oz July 12, 2012 |
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| Sadie - 8 lbs Nov 9, 2009 |
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| Tucked in July 12 |
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| High flow! July 16 |
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| July 18 |
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| July 18 |
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| July 18 |
Monday, July 16, 2012
July 16 - 80 days old
... or 12 weeks... or 36 weeks gestation.
A big day for me and Ryan today - a day I thought was a long way off/might never happen, but the stars aligned (I just spelled stats instead of stars, but his stats aligned as well;-) and we were able to take him off his biphasic machine and put him on 'high flow' for some NNS. Let me explain. What is high flow? It is straight up oxygen delivered through nasal prongs - no mask, no pressures. Facial freedom. What is NNS? Non Nutritive Sucking. It's basically breastfeeding minus the feeding part. It's just to let Ryan 'explore' and smell, and if we're lucky (which we were) to get a wee bit of milk. They don't want him to actually feed, because he obviously doesn't know how and would choke. He was on high flow for 35 mintues, just what the doctor wanted him to start with. Tomorrow they'd like to have him do an hour, and so on and so on every day until eventually they can get him to cpap, then to low flow, then home. This can apparently be a LONG process, but I'm glad the wheels are in motion. It was great to see everyone's excitement about our lil milestone today. RTs and nurses were all pretty smiley. I'm feeling hesitantly happy because I'm still scared of setbacks but I'll take this small victory for what it was. Good boy. Good night.
A big day for me and Ryan today - a day I thought was a long way off/might never happen, but the stars aligned (I just spelled stats instead of stars, but his stats aligned as well;-) and we were able to take him off his biphasic machine and put him on 'high flow' for some NNS. Let me explain. What is high flow? It is straight up oxygen delivered through nasal prongs - no mask, no pressures. Facial freedom. What is NNS? Non Nutritive Sucking. It's basically breastfeeding minus the feeding part. It's just to let Ryan 'explore' and smell, and if we're lucky (which we were) to get a wee bit of milk. They don't want him to actually feed, because he obviously doesn't know how and would choke. He was on high flow for 35 mintues, just what the doctor wanted him to start with. Tomorrow they'd like to have him do an hour, and so on and so on every day until eventually they can get him to cpap, then to low flow, then home. This can apparently be a LONG process, but I'm glad the wheels are in motion. It was great to see everyone's excitement about our lil milestone today. RTs and nurses were all pretty smiley. I'm feeling hesitantly happy because I'm still scared of setbacks but I'll take this small victory for what it was. Good boy. Good night.
Saturday, July 14, 2012
July 14
Had a nice morning visit with Ryan today.
Big news. On Thursday night, Nancy and I said farewell isolette and put Ryan in a crib. He was technically ready a week or so ago because he was 2000 g and was regulating his own temp, but we wanted to play it safe with the serratia bug and all. He's doing well in it. He's like a 'real' baby, and likes to be swaddled. They put a blanket across the top to keep the light out, and because he's still on all the monitors and probes, he's allowed to have comfy rolls and to still be on his tummy. Apparently when they reach term (36 weeks) they're not 'supposed' to be on their tummy's anymore, but when their lungs are still bad, they make some exceptions.
As for the Serratia, the typing came back, and it turns out that 5 kids had the same strain, 2 had the same strain, and 1 had it's own strain. The 2 and 5 mean that they were passed within the NICU. We haven't been told where Ry fits in there, but I'm thinking he's one of the 5 because he had had 2 negative swabs, then a positive one. I was very upset when I found out because it could mean months of his nurses having to wear gowns and gloves when they handle him. We also got moved to a different part of the unit, so now we're right in the middle, next to a sink and a garbage. It's even brighter and noisier than our old corner. Hopefully once this 'outbreak' settles down, we'll be able to be moved to a better area. There have been no more new cases as of yet, so hopefully things will calm down soon. I could rant for another couple paragraphs about why I'm bothered by this whole thing, but I won't. It's done. Nothing can be done to change it. Moving on. People are still allowed to visit us in the NICU, the same as before - everyone just has to be conscious of hand hygiene, but that's not anything new.
I'm due to post some pictures, looking back at the camera, there are many. Stay tuned.
Big news. On Thursday night, Nancy and I said farewell isolette and put Ryan in a crib. He was technically ready a week or so ago because he was 2000 g and was regulating his own temp, but we wanted to play it safe with the serratia bug and all. He's doing well in it. He's like a 'real' baby, and likes to be swaddled. They put a blanket across the top to keep the light out, and because he's still on all the monitors and probes, he's allowed to have comfy rolls and to still be on his tummy. Apparently when they reach term (36 weeks) they're not 'supposed' to be on their tummy's anymore, but when their lungs are still bad, they make some exceptions.
As for the Serratia, the typing came back, and it turns out that 5 kids had the same strain, 2 had the same strain, and 1 had it's own strain. The 2 and 5 mean that they were passed within the NICU. We haven't been told where Ry fits in there, but I'm thinking he's one of the 5 because he had had 2 negative swabs, then a positive one. I was very upset when I found out because it could mean months of his nurses having to wear gowns and gloves when they handle him. We also got moved to a different part of the unit, so now we're right in the middle, next to a sink and a garbage. It's even brighter and noisier than our old corner. Hopefully once this 'outbreak' settles down, we'll be able to be moved to a better area. There have been no more new cases as of yet, so hopefully things will calm down soon. I could rant for another couple paragraphs about why I'm bothered by this whole thing, but I won't. It's done. Nothing can be done to change it. Moving on. People are still allowed to visit us in the NICU, the same as before - everyone just has to be conscious of hand hygiene, but that's not anything new.
I'm due to post some pictures, looking back at the camera, there are many. Stay tuned.
July 12
(I wrote this on the 12th, but had technical problems... will do a current update later if time.)
A few busy days this week. Ryan's been stable, still on biphasic but still requiring at least 50 % oxygen (room air is 21%). They've started giving him an inhaled steroid (like what people with asthma take) to see if that can help lower his oxygen requirements. They've also given him a diuretic so that they can get rid of any excess fluid on his lungs - all in hopes of decreasing inflamation in the lungs and decreasing his O2 requirements. He's gaining weight steadily and is on an every 3 hour feeding schedule (like a regular baby).
BUT. There has been a number of cases of a bacteria called Serratia in the NICU - at 10 days babies bums are swabbed to check for bacteria (Ryan's was negative). Every-so often these swabs are done to ensure there are no weird bugs going around. One thing led to another, and a few babies had 'colonized' the bacteria. This means they're not 'infected', but they are growing the bacteria in their bowels.... ugh. So. Ryan's wee neighbour tested positive for the bug, and was put in 'isolation' what that means is that the nurses who are handling him need to wear a gown and gloves when they enter his isolette. The hospital began swabbing every 48 hours.... after the 2nd rounds of swabs, Ry's came back positive. As did 11 other babies. :-(
They've now clustered all the colonized babies and their nurses have to wear gowns and gloves. Parents don't have to since we're not touching any other babies. Today we find out whether the bug is from different 'families' (which would mean it's not been passed through the NICU) or from the same families (meaning it was). Yesterday we had a meeting with infection control and tomorrow we'll have another one to hear what they're going to do.
LUCKILY there hasn't been anyone 'infected' by the bug, and everyone is being watched very carefully. It's still a risk though, and if infection does occur, it's pretty serious so we're obviously worried about this. It also sucks being isolated because you feel alienated. I also don't like the fact that Ry doesn't get to feel warm hands on him, just sticky gloves. Hopefully his mighty immune system will kick in and beat the bug so he can come out of isolation. I've been looking into what I can take (a probiotic?) so that some of the extra good stuff can get into my milk... I doubt it, but it might be worth a shot.
In other news, Sadie has been loving G & G's pool and has been getting more and more confident in the water. It's also a nice break for me to be out in some fresh air for part of the day.
I also have to continue my big 'thank yous' to people who have been helping us out. I went to my first spin class since this all started, and my wonderful gym has given me 2 free months to come as I can since I really can't commit to investing the time/money to a gym right now. Love those ladies.
A few busy days this week. Ryan's been stable, still on biphasic but still requiring at least 50 % oxygen (room air is 21%). They've started giving him an inhaled steroid (like what people with asthma take) to see if that can help lower his oxygen requirements. They've also given him a diuretic so that they can get rid of any excess fluid on his lungs - all in hopes of decreasing inflamation in the lungs and decreasing his O2 requirements. He's gaining weight steadily and is on an every 3 hour feeding schedule (like a regular baby).
BUT. There has been a number of cases of a bacteria called Serratia in the NICU - at 10 days babies bums are swabbed to check for bacteria (Ryan's was negative). Every-so often these swabs are done to ensure there are no weird bugs going around. One thing led to another, and a few babies had 'colonized' the bacteria. This means they're not 'infected', but they are growing the bacteria in their bowels.... ugh. So. Ryan's wee neighbour tested positive for the bug, and was put in 'isolation' what that means is that the nurses who are handling him need to wear a gown and gloves when they enter his isolette. The hospital began swabbing every 48 hours.... after the 2nd rounds of swabs, Ry's came back positive. As did 11 other babies. :-(
They've now clustered all the colonized babies and their nurses have to wear gowns and gloves. Parents don't have to since we're not touching any other babies. Today we find out whether the bug is from different 'families' (which would mean it's not been passed through the NICU) or from the same families (meaning it was). Yesterday we had a meeting with infection control and tomorrow we'll have another one to hear what they're going to do.
LUCKILY there hasn't been anyone 'infected' by the bug, and everyone is being watched very carefully. It's still a risk though, and if infection does occur, it's pretty serious so we're obviously worried about this. It also sucks being isolated because you feel alienated. I also don't like the fact that Ry doesn't get to feel warm hands on him, just sticky gloves. Hopefully his mighty immune system will kick in and beat the bug so he can come out of isolation. I've been looking into what I can take (a probiotic?) so that some of the extra good stuff can get into my milk... I doubt it, but it might be worth a shot.
In other news, Sadie has been loving G & G's pool and has been getting more and more confident in the water. It's also a nice break for me to be out in some fresh air for part of the day.
I also have to continue my big 'thank yous' to people who have been helping us out. I went to my first spin class since this all started, and my wonderful gym has given me 2 free months to come as I can since I really can't commit to investing the time/money to a gym right now. Love those ladies.
Wednesday, July 4, 2012
July 4
Intense is an understatement when it comes to what's been happening over the last few weeks. Tumultuous is a word I rarely use (nor do I know how to spell it), but think it might be appropriate... I don't even really know where to start to write about what's been going on so here goes.
We've basically gone from nearly deciding to take Ryan off life-support because it was looking like his lungs were not responding to the steroid treatment (which was a last resort). We spent an entire tear-filled weekend in the city by his side the entire time watching and waiting for some sort of sign that he was responding to treatment - we were devastated. Out of desperation, we talked to numerous doctors and were encouraged to let the steroids run their course and see what happened. Low and behold, they started to work, right at the end... He was successfully extubated on June 24, and has remained on the Biphasic machine since. (Biphasic is a machine that gives puffs of air through his nose rather than the tube that went into his lungs, it's a much gentler form of ventilation - next step is c-pap) We are by no means out of the woods as he still requires the maximum ventilation that this machine can supply, and his oxygen reserves are negligible (he can't be off the machine for more than a couple minutes). However, he's still showing signs of fighting.
It has been a very hard time for us, constantly debating if we are putting him through too much - how much can these little bodies take - is it fair to him to go through all this stuff - what sort of life will he have after this is all done - how much pain is he really in... the list goes on and on. All we can do is trust our instincts and our medical team, and know that we are doing everything in our power to keep him comfortable and to ensure that he has the best possible outcome.
As I said, we are not out of the woods. After his routine eye exam, they found that he has ROP (retinopathy of prematurity). This is an eye disease that effects preemies, especially those exposed to high levels of oxygen... He had his follow up check and it was the same, so he'll continue to be on weekly monitoring. Treatment would involve him having to be re-intubated for 24 hours, which no one is in a hurry to want to do, but if left untreated, it could cause blindness. Treatment also involves going over to Sick Kids and they do a laser surgery. We're watching his oxygen levels closely, and hoping that it doesn't progress to the stage that will require treatment. Each day off a ventilator is so much better for his lungs.
What's happening now... he is stable. He's needing oxygen and pressures from the biphasic, so we're hoping that eventually his oxygen requirements will go down, and they can wean some of the pressure. Nancy has told us that could take a long time. Until he tells us one way or another, we'll wait. It's much easier to take him out of his isolette now, so we've been enjoying lots of cuddles. He's a 'big' guy now, so he's wearing clothes and regulating his own temperature. Within the next few days, he may even be moved to a crib. These are all good things that I say with that fear in the back of my mind - anticipating the next downhill ride on this roller coaster.
To end on a positive note - when Scott asked Sadie if she wanted me to say anything to Ryan for her, she said, "I love you Ryan."
We've basically gone from nearly deciding to take Ryan off life-support because it was looking like his lungs were not responding to the steroid treatment (which was a last resort). We spent an entire tear-filled weekend in the city by his side the entire time watching and waiting for some sort of sign that he was responding to treatment - we were devastated. Out of desperation, we talked to numerous doctors and were encouraged to let the steroids run their course and see what happened. Low and behold, they started to work, right at the end... He was successfully extubated on June 24, and has remained on the Biphasic machine since. (Biphasic is a machine that gives puffs of air through his nose rather than the tube that went into his lungs, it's a much gentler form of ventilation - next step is c-pap) We are by no means out of the woods as he still requires the maximum ventilation that this machine can supply, and his oxygen reserves are negligible (he can't be off the machine for more than a couple minutes). However, he's still showing signs of fighting.
It has been a very hard time for us, constantly debating if we are putting him through too much - how much can these little bodies take - is it fair to him to go through all this stuff - what sort of life will he have after this is all done - how much pain is he really in... the list goes on and on. All we can do is trust our instincts and our medical team, and know that we are doing everything in our power to keep him comfortable and to ensure that he has the best possible outcome.
As I said, we are not out of the woods. After his routine eye exam, they found that he has ROP (retinopathy of prematurity). This is an eye disease that effects preemies, especially those exposed to high levels of oxygen... He had his follow up check and it was the same, so he'll continue to be on weekly monitoring. Treatment would involve him having to be re-intubated for 24 hours, which no one is in a hurry to want to do, but if left untreated, it could cause blindness. Treatment also involves going over to Sick Kids and they do a laser surgery. We're watching his oxygen levels closely, and hoping that it doesn't progress to the stage that will require treatment. Each day off a ventilator is so much better for his lungs.
What's happening now... he is stable. He's needing oxygen and pressures from the biphasic, so we're hoping that eventually his oxygen requirements will go down, and they can wean some of the pressure. Nancy has told us that could take a long time. Until he tells us one way or another, we'll wait. It's much easier to take him out of his isolette now, so we've been enjoying lots of cuddles. He's a 'big' guy now, so he's wearing clothes and regulating his own temperature. Within the next few days, he may even be moved to a crib. These are all good things that I say with that fear in the back of my mind - anticipating the next downhill ride on this roller coaster.
To end on a positive note - when Scott asked Sadie if she wanted me to say anything to Ryan for her, she said, "I love you Ryan."
Long Overdue Post (and pictures!)
I finally have a little time to sit and write... not really my ideal way to spend the evening... Sadie's asleep, and I'd really like to be having my Ryan snuggle, but unfortunately on my way to the hospital, this happened...
.... Yup, that's the bottom of our car falling off. The other night on my way home from the hospital, there was a bunch of foam insulation scattered across the 404, and since it was dark, and there was debris all across 3 lanes, I ran over a fairly large chunk. No harm done (I thought)... Today when I was driving I heard something that sounded like maybe a flat tire so I pulled off at a mall to check it out. Bummer. I turned around and headed to the dealer (driving slowly up a VERY busy road in rush hour). To me it doesn't look like a cheap and/or easy fix... is there even such thing in the automotive repair world!!?? So - it's a forced night off for me, and I'm not gonna lie, it's tough not seeing him. We've had A LOT of time together in the last few weeks. I've called the unit a bunch of times, and he's doing well. I will get into the Ryan update in the next post, but first - more pictures.
There's a lot to write about, so I'm going to do a separate post to update on what's going on. Stay tuned...
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| His new label after returning to Sinai after his surgery. So nice. |
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| A Father's Day cuddle. June 17 |
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| Can't remember if I posted a pic of this yet, but it was a pretty big deal. (He's now over 1900 g!) |
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| June 20, wearing a hat made by our friend Jen |
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| June 23. The day before his extubation, think he's excited? |
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| Your wish is our command. Extubated June 24 |
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| Us and Nancy, our angel - also, first cuddle on BiPhasic machine |
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| June 24 |
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| Rockin' his first onesie, June 30 |
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| Peek-a-boo! July 1 |
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| July 2 |
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| A nice surprise the night nurses made |
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| A moment with no tubes! July 2 |
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| New sleeper! July 4 |
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