Leo's 4 lbs!!!!!!!!!!!! To be exact, he weighed in at 3 lbs, 15.9 ounces last night. Since it's now a day later I'm going to claim that, yes, he's now 4 lbs. YAY!!!!!!!!! The other really cool thing from today was Leo's very successful nursing session with Mom. He went at it for 5 minutes straight, pausing to take breaths where he needed to, swallowing, etc. It was amazing really, it's only his third attempt at booby time and the nurses were pretty impressed too. His feedings via the tube will continue for a while yet, but this is wonderful progress. And all of the things they say about the bonding when he looks up at you really are true. It was amazing.
The Wings are down 3-2 with about 2 minutes to go in the 2nd period and Cleary just got knocked to high heaven. So I must get back to the game...it's playoff hockey after all. This is our current distraction from life in the NICU - it's critical to have distractions.
Leo updates, house projects, funny stuff.
Thursday, April 29, 2010
Wednesday, April 28, 2010
Schoolin'
I've decided to go back to school...medical school no less. Well, that might be a *bit* of an overstatement...but given my lack of science-based education (I am a Communications major after all) this is about as close to medical school as I'm ever going to get. What am I talking about, you ask? Well I picked up a copy of "Newborn Intensive Care, What Every Parent Should Know" from the hospital today...I mean if every parent MUST know it then I suppose I should spend some time studying. It's actually a really great book, filled with easily digestible scientific info and explanations for all of the various ailments, conditions, procedures, personnel, etc. in the NICU. It's actually really helpful to translate all of the things we've been hearing for weeks now. So it only took me five weeks to seek out the information but that's OK. Other things were occupying my mind. Here's to continuous learning.
So Leo and I had more booby time today, this is definitely going to be work. Cue the weird lactation ladies. Sigh. But his breathing on the cannula is going really well, no big events. So at least one of the major problem areas appears to be improving. I think we can safely put Leo's problem areas into two main categories: Breathing (which is improving) and Liver/GI Track. As I've mentioned, his liver situation is a big mystery right now. He's clearly got toxins hanging out in his system but they're not sure what exactly is wrong and whether it's specifically a liver issue or something else. So they're doing a ton of tests right now and tweaking various things with his feeds and generally speaking scratching their heads. Hopefully time will fix it and his billirubin levels will start to go down. If they don't, though, the mystery will continue until they land on something concrete. The good news is that this mystery doesn't impact his progress in terms of moving down to the second floor or even going home. At least not right now.
Oh, and Leo's buddy Rowan moved down to the second floor today. Leo and Rowan are the same gestational age but Rowan came in at 28 weeks so he's a little further along. We're very happy for them and Rowan left Leo a very sweet note today letting him know that the second floor is really cool and he has something to look forward to. So Leo's the old man of his NICU room now. Hopefully not for long.
So Leo and I had more booby time today, this is definitely going to be work. Cue the weird lactation ladies. Sigh. But his breathing on the cannula is going really well, no big events. So at least one of the major problem areas appears to be improving. I think we can safely put Leo's problem areas into two main categories: Breathing (which is improving) and Liver/GI Track. As I've mentioned, his liver situation is a big mystery right now. He's clearly got toxins hanging out in his system but they're not sure what exactly is wrong and whether it's specifically a liver issue or something else. So they're doing a ton of tests right now and tweaking various things with his feeds and generally speaking scratching their heads. Hopefully time will fix it and his billirubin levels will start to go down. If they don't, though, the mystery will continue until they land on something concrete. The good news is that this mystery doesn't impact his progress in terms of moving down to the second floor or even going home. At least not right now.
Oh, and Leo's buddy Rowan moved down to the second floor today. Leo and Rowan are the same gestational age but Rowan came in at 28 weeks so he's a little further along. We're very happy for them and Rowan left Leo a very sweet note today letting him know that the second floor is really cool and he has something to look forward to. So Leo's the old man of his NICU room now. Hopefully not for long.
Tuesday, April 27, 2010
Booby Time!
But first...Leo's off the Vapotherm! For now he's doing really well on the nasal cannula. So this means he's just getting oxygen through the nasal prongy things...no pressure like he was getting with the Vapotherm. So this is a good thing! It's as far as he has gotten previously before having to go back to the Vapotherm the last time. So this time around we're hoping second time's a charm and he can just further transition off the assisted air altogether. Today's new wrinkle continues to be the mystery behind his high direct billirubin levels. Billirubin (look at me talking science!) is essentially the bile that is in the body but instead of his liver and gallbladder doing their jobs to push the bile out of the body (via poop), his is sticking around somewhere in his body which is resulting in pale poops and a yellowed body color. As I mentioned yesterday they've tested him for a liver virus which can be acquired once the little guys are out of the womb. We won't know for a few days if that's what's causing the high billi levels. It could also be as simple as the liver and gallbladder not being fully developed yet and so it just takes time. We just don't know.
BUT, for today's super fun news (besides the nasal cannula which was a HUGE fun surprise this morning...thanks to our awesome nurse who was advocating hard for this change to the powers that be) - Leo had some booby time tonight! And not just nuzzling...he had his first lesson in feeding. Now, this is not like a full term baby and the nice lactation folks come over and help the new Mom guide the booby into the mouth and all's well and wonderful and the Motherhood goddesses smile down upon her. This is serious learning for Leo. But, all indications today suggest that he *should* do just fine. He was taking to things very well. It's going to take MANY more times with the booby before he gets it. But at least we've begun.
Jay and I are also coming to terms with what our new reality is going to be once Leo does come home. Leo won't be as healthy as a full term baby even after he gets out of the hospital. We're in for months of keeping him sheltered from people, places and germs. And that's going to be pretty tough. No big family visits or group activities, not a lot of outside time, no one with so much as a sniffle within a 5 mile radius (well that might be an overstatement, but you get the gist). It's going to suck a little bit quite frankly. But, as our nurse said to us tonight, there's too much invested in Leo at this point to risk anything major like a cold or an infection just for the sake of not wanting to disappoint other people who want to see him. So while it's going to be a little bit of a bummer in some respects, it won't be forever (just through the first flu season really...so his first year essentially) and it's for the best. And that's just one of the countless tough lessons we're learning. For Leo it's boobs, breathing and billirubin. For us it's managing disappointment. As a friend of mine who is currently battling her own unexpected life lessons says - ONWARD.
BUT, for today's super fun news (besides the nasal cannula which was a HUGE fun surprise this morning...thanks to our awesome nurse who was advocating hard for this change to the powers that be) - Leo had some booby time tonight! And not just nuzzling...he had his first lesson in feeding. Now, this is not like a full term baby and the nice lactation folks come over and help the new Mom guide the booby into the mouth and all's well and wonderful and the Motherhood goddesses smile down upon her. This is serious learning for Leo. But, all indications today suggest that he *should* do just fine. He was taking to things very well. It's going to take MANY more times with the booby before he gets it. But at least we've begun.
Jay and I are also coming to terms with what our new reality is going to be once Leo does come home. Leo won't be as healthy as a full term baby even after he gets out of the hospital. We're in for months of keeping him sheltered from people, places and germs. And that's going to be pretty tough. No big family visits or group activities, not a lot of outside time, no one with so much as a sniffle within a 5 mile radius (well that might be an overstatement, but you get the gist). It's going to suck a little bit quite frankly. But, as our nurse said to us tonight, there's too much invested in Leo at this point to risk anything major like a cold or an infection just for the sake of not wanting to disappoint other people who want to see him. So while it's going to be a little bit of a bummer in some respects, it won't be forever (just through the first flu season really...so his first year essentially) and it's for the best. And that's just one of the countless tough lessons we're learning. For Leo it's boobs, breathing and billirubin. For us it's managing disappointment. As a friend of mine who is currently battling her own unexpected life lessons says - ONWARD.
Monday, April 26, 2010
Two-Stepping
Oh the reality of "two steps forward, one step back." It really is so true. Frustratingly true. Leo's still doing fine, but today's "step back" came in the form of a test they're doing for a virus that attacks the liver and could be an explanation for his continued elevated billirubin levels - the toxins that keep his color looking a bit off. They don't know if he has it, they're just testing him. If he has it, he could've gotten it from almost anywhere as it's a pretty common thing floating around out there. Could've been from my milk, could've gotten it in the womb, could've happened after he was born. Who knows. But for now it's just a test. And I need to not go set up camp in the "oh my god he has something else wrong with him, when will this stop?!" place that I sometimes go visit for too long. This is only a test.
One point of fun news today (it's the little things) is that his feeding tube is now in his nose instead of his mouth so you can see his cute little chin! Complete with a very large cleft. Check it out!
One point of fun news today (it's the little things) is that his feeding tube is now in his nose instead of his mouth so you can see his cute little chin! Complete with a very large cleft. Check it out!
Sunday, April 25, 2010
Sundays
We had a great day today. It was a Leo day from start to finish. We went to the hospital in the morning and the nurses let us know that Leo was doing great again today. They took his vapotherm down from 5 to 4 (which as I was reminded today means the level of pressure has been reduced...the vapotherm is both oxygen and pressure so that he doesn't have to do all the work himself...so taking it down one level to 4 means the pressure is being reduced...this means he's doing more of the work himself...that's good). Our favorite nurse was on duty and she and I have a bet going about when Leo will graduate and head down to the second floor. She thinks it's going to be by next week. I'm thinking it's going to take a little bit more time. She really wants to win this bet because she was advocating for Leo to ween fully off of the vapotherm and go back on the nasal cannula (no pressure, just oxygen). But the doctors want to give it another day or two just to be sure he's not being rushed. Which is fine with me. But it looks like sometime this week he'll get to try to start nursing which is very exciting.
So when we got home we tackled the nursery. It's going to be a bit of a hybrid for a while...the basement rooms are nowhere near done and likely won't be by the time he comes home so we need to improvise. Leo's room will also house the occasional Grandma who may need a place to sleep. So we put his crib together and patched some dings in the walls. We moved all of my office stuff out of there and found other hiding spots upstairs for all my gear until the office is ready downstairs. So for now this will work fine. And having all of Leo's stuff on display including his crib makes it all feel real in a way that having him in the hospital just doesn't.
So it was a good day. A productive day. A hopeful day. Can't wait for more good things this week.
So when we got home we tackled the nursery. It's going to be a bit of a hybrid for a while...the basement rooms are nowhere near done and likely won't be by the time he comes home so we need to improvise. Leo's room will also house the occasional Grandma who may need a place to sleep. So we put his crib together and patched some dings in the walls. We moved all of my office stuff out of there and found other hiding spots upstairs for all my gear until the office is ready downstairs. So for now this will work fine. And having all of Leo's stuff on display including his crib makes it all feel real in a way that having him in the hospital just doesn't.
So it was a good day. A productive day. A hopeful day. Can't wait for more good things this week.
Friday, April 23, 2010
Fridays and Friends
Yay it's Friday! Even in my new world of each day being pretty much the same, somehow Fridays always feel hopeful. More relaxed, excited about what's to come for the weekend...even if it's just the mundane. Somehow it's all better on Friday.
Leo was doing "fabulous" today, to quote his nurse. Still on the vapotherm of 5 (meaning they haven't started to ween him from it yet) BUT his oxygen level went down to 21% - he'd been hovering around 30% for most of the week, so this is a good step. Don't ask me the difference between the vapotherm setting of 5 and the percentage of oxygen...I'm in PR, I just repeat what the technical folks tell me without really worrying about understanding the details. Oh, I even got a shout out from the nurses for my milk supply today! Can I get a WOOT! It's crazy how very proud of myself I felt as I left the hospital today. Way to go girls!
Lots of celebratory-ness going on this weekend. Some Leo-related, some family-related. Can't wait to hang with everyone tomorrow.
And here's hoping the Red Wings can pull out another win tonight...losing in the first round really would just be a crying shame. Happy Friday!
Leo was doing "fabulous" today, to quote his nurse. Still on the vapotherm of 5 (meaning they haven't started to ween him from it yet) BUT his oxygen level went down to 21% - he'd been hovering around 30% for most of the week, so this is a good step. Don't ask me the difference between the vapotherm setting of 5 and the percentage of oxygen...I'm in PR, I just repeat what the technical folks tell me without really worrying about understanding the details. Oh, I even got a shout out from the nurses for my milk supply today! Can I get a WOOT! It's crazy how very proud of myself I felt as I left the hospital today. Way to go girls!
Lots of celebratory-ness going on this weekend. Some Leo-related, some family-related. Can't wait to hang with everyone tomorrow.
And here's hoping the Red Wings can pull out another win tonight...losing in the first round really would just be a crying shame. Happy Friday!
Thursday, April 22, 2010
Sickies
Jay has been taken down by something...and it ain't pretty. So while he's home sick this afternoon I will try not to pick up whatever he's found. I'm hoping this is just a brief bout with "mystery food" illness vs. full-on flu. We shall see.
Leo's having another quiet day, his vapotherm is still at 5 and he's doing fine with that. His feeds are going great and he's transitioning well to the new feeding schedule. We're waiting for the medicine to kick in and start ridding his body of those high billirubin levels so that his color starts to get more to where it should. Mind you he looks loads better than he did a few weeks ago but he still has a bit of an olive undertone and given that his parents are not anything remotely close to olive toned people we know that he's still got some funk in there that needs to be worked out. But hopefully those meds will work and get his gallbladder into gear and soon he'll be the pasty white/pink kid he is destined to become.
On an unrelated note, I made a killer lasagna last night that was rediculously easy and quick. I think the key to easy lasagna is just soaking the noodles in some hot water while you're making the sauce...no need to pre-boil...and then just doing a really simple mixture of ricotta, parmesan cheese, salt/pepper and an egg. I don't mess with frozen spinach when I'm in a rush. And the sauce takes about 5 minutes - saute some onions and garlic, throw in a can of crushed tomatoes, season, let it simmer for about 5 minutes and that's it. You could throw in your choice of ground meat product or simply add more veggies if you want to bulk up the sauce. I had some chicken sausage so threw that in with the onions to make it meaty. Layer everything up and throw some fresh mozz on top and you're good. I swear I had the dish assembled in 15 minutes last night before our evening hospital visit and when we came home it was about 30 minutes in the oven. YUM.
Leo's having another quiet day, his vapotherm is still at 5 and he's doing fine with that. His feeds are going great and he's transitioning well to the new feeding schedule. We're waiting for the medicine to kick in and start ridding his body of those high billirubin levels so that his color starts to get more to where it should. Mind you he looks loads better than he did a few weeks ago but he still has a bit of an olive undertone and given that his parents are not anything remotely close to olive toned people we know that he's still got some funk in there that needs to be worked out. But hopefully those meds will work and get his gallbladder into gear and soon he'll be the pasty white/pink kid he is destined to become.
On an unrelated note, I made a killer lasagna last night that was rediculously easy and quick. I think the key to easy lasagna is just soaking the noodles in some hot water while you're making the sauce...no need to pre-boil...and then just doing a really simple mixture of ricotta, parmesan cheese, salt/pepper and an egg. I don't mess with frozen spinach when I'm in a rush. And the sauce takes about 5 minutes - saute some onions and garlic, throw in a can of crushed tomatoes, season, let it simmer for about 5 minutes and that's it. You could throw in your choice of ground meat product or simply add more veggies if you want to bulk up the sauce. I had some chicken sausage so threw that in with the onions to make it meaty. Layer everything up and throw some fresh mozz on top and you're good. I swear I had the dish assembled in 15 minutes last night before our evening hospital visit and when we came home it was about 30 minutes in the oven. YUM.
Wednesday, April 21, 2010
Hot water!
Hoo-ray for hot water! My wonderful husband replaced the heater yesterday and all is working fine...better than fine really. We can now take showers that are more than five minutes in length...even though I know we shouldn't...the fact that we can is pretty nice...especially when you're shaving your legs and the water doesn't immediately turn cold.
Henry's still a wee lumpy...but the shots from yesterday and the additional Benadryl today seem to be keeping things relatively in check. We'll see...
Leo's eyes aren't developed yet! This is actually pretty normal given the whole he's-not-ready-to-be-out-of-the-womb-yet thing. So they'll test his eyes again in a couple of weeks and hopefully things will be further developed. No signs of abnormalities so that's good. And he's doing well on his reduced oxygen (vapotherm) as well as his adjusted feeds. All in all a quiet, good day for Mr. Leo. We like that. Now, if we can just find a pediatrician, pump, get the crib set-up, take that CPR class, pump, finish the office downstairs, get the car seat installed, pump - ah geez, there goes my blood pressure.
Why is it that I feel more stressed out now than when I was working full time? This does not bode well for future when Mommy's back at work AND Leo's here...in our house...all the time! I think I hear all those other parents out there saying in unison "welcome to the club." Can't wait.
Henry's still a wee lumpy...but the shots from yesterday and the additional Benadryl today seem to be keeping things relatively in check. We'll see...
Leo's eyes aren't developed yet! This is actually pretty normal given the whole he's-not-ready-to-be-out-of-the-womb-yet thing. So they'll test his eyes again in a couple of weeks and hopefully things will be further developed. No signs of abnormalities so that's good. And he's doing well on his reduced oxygen (vapotherm) as well as his adjusted feeds. All in all a quiet, good day for Mr. Leo. We like that. Now, if we can just find a pediatrician, pump, get the crib set-up, take that CPR class, pump, finish the office downstairs, get the car seat installed, pump - ah geez, there goes my blood pressure.
Why is it that I feel more stressed out now than when I was working full time? This does not bode well for future when Mommy's back at work AND Leo's here...in our house...all the time! I think I hear all those other parents out there saying in unison "welcome to the club." Can't wait.
Tuesday, April 20, 2010
For Reals?
Oh life...they say that God doesn't give us more than we can handle. I tend to believe this. And while I don't think the sweet baby Jesus had anything to do with the events of last night I am trying to keep this saying in mind today.
Our evening visit with Leo was fine and uneventful. He's been in the hospital for four weeks now and this is about the time parents start to get a little impatient for progress. Leo's not making progress at the same rate as he did right out of the gates, we're in the "slow and steady" phase right now. I'm not known for my abundance of patience (shocker) and therefore this phase is just simply not moving fast enough for my taste. At the same time I realize fully that slow and steady is the way to go so I'm trying to keep my Type A in check. Ha.
After the hospital we get home and Jay feeds the dogs (two Boston Terriers - Beans and Henry) and takes them outside post dinner to do some business. He comes back in the house a few minutes later with panic in his voice, holding Henry - "I think something's wrong with Henry, he's puffing up all over." Mind you, I'm pumping at this exact moment so there's really no place for me to go what with the girls occupied. We deduce he must've gotten stung by something. Jay calls the vet, the vet is closing, we need to call the emergency vet. He calls the emergency vet and they suggest Benadryl - Henry was breathing fine, eyes weren't closing up, etc. so this seemed reasonable. Jay heads over to the ghetto Safeway by our house (it's so ghetto I've never actually been in it) and we proceed to put Henry on Benadryl for the evening. It works! Swelling subsides considerably, whew. Dodged a bullet there.
About 20 minutes later I'm washing my pump parts (this is something I do a rediculous number of times each day) in hot, soapy water as directed...except the water isn't hot. Oh bother, we must've used up too much hot water this evening. Except that we hadn't really - no showers or dishwasher or laundry. Just sink use. Hmmm. Jay investigates and deduces that, yes, our hot water heater has decided to die. Sweet. Now I'm not really what you'd call an outdoorsy sort of girl so I don't really know what to do with no hot water. The stove! I'm a genius. Tea kettle + sink = means to wash things in hot water until Jay can replace the water heater. So that's what our afternoon will consist of today. Awesome.
On the upside, Leo is now transitioning to Bolus Feeds - this just means instead of having him on a continuous feed they'll start to spread his feedings out a bit - so they'll do a feeding via the tube, stop it for an hour, then start up again, stop it for another hour, etc. - they'll do this over a period of a few days until he's on a more typical feeding pattern. They are also going to turn his Vapotherm down from 6 to 5 - this just means they're weening him from his oxygen requirements - that much closer to getting onto the cannula again which is when he can start trying to nurse. So these are two good things! And presuming they both go well and he doesn't have any set-backs, this is exactly the sort of forward progress I've been anxious to see for a few days. Yay for that. Boo for stupid water heaters. But yay for this. Oh and Henry's swelling is back, I'm taking him to the vet this afternoon. Awesome.
Not more than I can handle...not more than I can handle...
Our evening visit with Leo was fine and uneventful. He's been in the hospital for four weeks now and this is about the time parents start to get a little impatient for progress. Leo's not making progress at the same rate as he did right out of the gates, we're in the "slow and steady" phase right now. I'm not known for my abundance of patience (shocker) and therefore this phase is just simply not moving fast enough for my taste. At the same time I realize fully that slow and steady is the way to go so I'm trying to keep my Type A in check. Ha.
After the hospital we get home and Jay feeds the dogs (two Boston Terriers - Beans and Henry) and takes them outside post dinner to do some business. He comes back in the house a few minutes later with panic in his voice, holding Henry - "I think something's wrong with Henry, he's puffing up all over." Mind you, I'm pumping at this exact moment so there's really no place for me to go what with the girls occupied. We deduce he must've gotten stung by something. Jay calls the vet, the vet is closing, we need to call the emergency vet. He calls the emergency vet and they suggest Benadryl - Henry was breathing fine, eyes weren't closing up, etc. so this seemed reasonable. Jay heads over to the ghetto Safeway by our house (it's so ghetto I've never actually been in it) and we proceed to put Henry on Benadryl for the evening. It works! Swelling subsides considerably, whew. Dodged a bullet there.
About 20 minutes later I'm washing my pump parts (this is something I do a rediculous number of times each day) in hot, soapy water as directed...except the water isn't hot. Oh bother, we must've used up too much hot water this evening. Except that we hadn't really - no showers or dishwasher or laundry. Just sink use. Hmmm. Jay investigates and deduces that, yes, our hot water heater has decided to die. Sweet. Now I'm not really what you'd call an outdoorsy sort of girl so I don't really know what to do with no hot water. The stove! I'm a genius. Tea kettle + sink = means to wash things in hot water until Jay can replace the water heater. So that's what our afternoon will consist of today. Awesome.
On the upside, Leo is now transitioning to Bolus Feeds - this just means instead of having him on a continuous feed they'll start to spread his feedings out a bit - so they'll do a feeding via the tube, stop it for an hour, then start up again, stop it for another hour, etc. - they'll do this over a period of a few days until he's on a more typical feeding pattern. They are also going to turn his Vapotherm down from 6 to 5 - this just means they're weening him from his oxygen requirements - that much closer to getting onto the cannula again which is when he can start trying to nurse. So these are two good things! And presuming they both go well and he doesn't have any set-backs, this is exactly the sort of forward progress I've been anxious to see for a few days. Yay for that. Boo for stupid water heaters. But yay for this. Oh and Henry's swelling is back, I'm taking him to the vet this afternoon. Awesome.
Not more than I can handle...not more than I can handle...
Monday, April 19, 2010
Farmeceuticals
Point of correction from I think yesterday's post...Leo is on FloVENT, not FloMAX. Flomax is some sort of I'm-a-man-and-I-pee-too-much-and-need-help-for-stopping-and-starting whereas Flovent is a low-dose steroid inhalent that helps open up Leo's airways and lungs to aid in his breathing. I called it Flomax in the hospital today and the nurse laughed at me. It's ok, I was laughing at me too. Oh drug marketing.
It was a pretty quiet day in the NICU today. Leo's just hanging out on the Vapotherm. We're hoping they start to ween him off of it, possibly as soon as tonight they may turn it down. The nurse even said tonight that it's feasible he could be ready to go down to the SECOND FLOOR(cue choir of angels)in a couple of weeks. I'm not feeling as optimistic but that would be super sweet if it happened.
We've also been told to start getting little things handled - finding a pediatrician, getting the carseat installed, bringing in blankets, etc. It's odd that in the span of one five minute conversation your frame of reference can go from "my kid's going to be in here for a very long time so there's nothing really for me to do right now" to "gosh we probably should get started on these things because he's going to be home before we know it!" That's a good frame of reference to be in I must say. As long as it doesn't create unreasonable expectations and therefore disappointment. Will keep it in check.
I brought a blanket home today for the dogs to get a whiff of their brother. Bonus, they didn't try to eat the blanket! Hurray!
Happy Monday all...I think it's leftovers tonight...Gyros out of the roasted lamb from Saturday. Yay!
It was a pretty quiet day in the NICU today. Leo's just hanging out on the Vapotherm. We're hoping they start to ween him off of it, possibly as soon as tonight they may turn it down. The nurse even said tonight that it's feasible he could be ready to go down to the SECOND FLOOR(cue choir of angels)in a couple of weeks. I'm not feeling as optimistic but that would be super sweet if it happened.
We've also been told to start getting little things handled - finding a pediatrician, getting the carseat installed, bringing in blankets, etc. It's odd that in the span of one five minute conversation your frame of reference can go from "my kid's going to be in here for a very long time so there's nothing really for me to do right now" to "gosh we probably should get started on these things because he's going to be home before we know it!" That's a good frame of reference to be in I must say. As long as it doesn't create unreasonable expectations and therefore disappointment. Will keep it in check.
I brought a blanket home today for the dogs to get a whiff of their brother. Bonus, they didn't try to eat the blanket! Hurray!
Happy Monday all...I think it's leftovers tonight...Gyros out of the roasted lamb from Saturday. Yay!
Sunday, April 18, 2010
Juicin'
It's with a heavy heart that Jay and I must come clean about the dark secret we've been carrying for, oh, about two days now. Yes, it's true...little Leo has already gone to the dark side. He's juicing. The doctors thought a steroid inhalent would help open his lungs more fully, alleviate some of the swelling, etc. so he began his course of Flomax the other day and had his Sunday labs done today so we'll see tomorrow if it's starting to help. Ideally they'll be able to start turning down his vapotherm to get him closer to the nasal cannula again. Nasal cannula = start trying to nurse so this is a big one we're waiting for with much hope. His feeds are going great, he's up to full feeds today and doing well.
We met our NICU neighbors finally today...and I promptly forgot the Mom's name. Fail. Their little boy is also 34 weeks but he showed up at 28 weeks vs. 30 for Leo so he's been there a bit longer and is therefore a little further ahead of Leo. There are daily exchanges among the parents here; mostly knowing, kind smiles as if to say "I get it, this sucks, hope you're doing OK." It's nice to connect with one or two of them if you're able...and if they're people you, in fact, want to connect with. Just sayin. But these folks are lovely and live nearby so who knows, maybe we've made some NICU friends. It's a little less pressure this way vs. the group therapy pizza night (no kidding) they offer with the overly nurturing "parent mentors." Again, not trying to be snarky but sometimes the extra gentle tone of people you encounter in the NICU is, frankly, annoying. And at the same time I'm grateful for all of the services they provide. So there you have it. It's great on one hand, and on the other you sort of want to run screaming sometimes.
But enough of my snark. I did want to say a continued thank you to everyone for your love and support. We're constantly blown away and amazed by how lucky we are to have such wonderful family, friends, colleagues, neighbors, strangers, etc. in our lives. Especially because we know that you all have stuff going on in your lives too - stresses, concerns, health problems, job searches, whatever. So we appreciate it. That's all.
Must get back to this lovely sunny Sunday. Jay is mowing the lawn, I'll be doing some weeding here in a bit and both our beloved Red Wings and Mariners are playing today. And the Mariners are playing the Tigers! It's a Detroit Sunday for sure.
We met our NICU neighbors finally today...and I promptly forgot the Mom's name. Fail. Their little boy is also 34 weeks but he showed up at 28 weeks vs. 30 for Leo so he's been there a bit longer and is therefore a little further ahead of Leo. There are daily exchanges among the parents here; mostly knowing, kind smiles as if to say "I get it, this sucks, hope you're doing OK." It's nice to connect with one or two of them if you're able...and if they're people you, in fact, want to connect with. Just sayin. But these folks are lovely and live nearby so who knows, maybe we've made some NICU friends. It's a little less pressure this way vs. the group therapy pizza night (no kidding) they offer with the overly nurturing "parent mentors." Again, not trying to be snarky but sometimes the extra gentle tone of people you encounter in the NICU is, frankly, annoying. And at the same time I'm grateful for all of the services they provide. So there you have it. It's great on one hand, and on the other you sort of want to run screaming sometimes.
But enough of my snark. I did want to say a continued thank you to everyone for your love and support. We're constantly blown away and amazed by how lucky we are to have such wonderful family, friends, colleagues, neighbors, strangers, etc. in our lives. Especially because we know that you all have stuff going on in your lives too - stresses, concerns, health problems, job searches, whatever. So we appreciate it. That's all.
Must get back to this lovely sunny Sunday. Jay is mowing the lawn, I'll be doing some weeding here in a bit and both our beloved Red Wings and Mariners are playing today. And the Mariners are playing the Tigers! It's a Detroit Sunday for sure.
Saturday, April 17, 2010
Pennies From Heaven
Today is a great day. First off, the Wings won last night, so we went to bed in a good mood. Then today, we roll into the hospital for our morning visit with Leo thinking it would be an ordinary morning of changing diapers, taking his temp and doing some skin-to-skin. But when we arrived the nurse said that today Leo was having his PICC line removed! And that we could give him a bath! Needless to say, these seemingly small things make us very, very happy. His PICC line is the IV in his arm that's been giving him the gatorade stuff. He's doing so well on his feeds that they can take that out...one step closer to free range babyhood. And then to follow that with a bath?!?!? Well, this was shaping up to be one fantastic morning.
So the bath was high comedy. Leo has to have all of his sensors and other things stuck to him removed, and then he can come out and be bathed in a small little plastic bin. Note to new/expectant parents: As with so much of the baby crap we are led to believe we need, you probably don't need anything super fancy for bathing your newborn...I'm now thinking the kitchen sink literally would do quite nicely. So we start at his face and work our way down, Jay and I taking turns wiping his parts ("I want to wipe that, no me!"), getting into the creases (he now has chub!), finally working our way to the nether parts and then washing his head (another note, the head is last so they don't get as cold, good tip!). And then it was on to Dad's chest for snuggle time. And he was out...Leo that is.
So as we're sitting there chatting, the very nice social worker lady comes over to talk to us. One of the many things we love about Swedish is that they have a full team of folks at our disposal - therapists, social workers, lactation (even though they're weird), etc. - all there to help us out however we need. It's pretty fantastic. So anyway, social worker lady asks us if we're going to apply for Medicaid. Um, Medicaid? No, we have insurance. Oh, this is supplemental, for Leo. And it covers whatever your insurance doesn't...deductibles, out of pocket maximums, whatever percentage your insurance won't cover, etc. UM, EXCUSE ME?!?!?! Oh yes, most everyone who goes through the NICU applies for it, unless you're with Microsoft or Boeing or the government and have 100% coverage for everything. OH MY GOD! SERIOUSLY!?!? But we have jobs and income, surely it doesn't apply to us. No, it does, it's not based on your income but on Leo's. So unless he has a trust fund set up somewhere that would count as "income" (I hold back outright laughter at this) he's covered. I'll get you the paperwork and you can fill it out and give it back to me and I'll handle getting it filed. Um, OK - that would be awesome! OH MY GOD! WE JUST WON THE LOTTERY!!! While this may seem like perhaps an overstatement, it's not and let me tell you why. We found out today that the NICU daily bill is roughly $8,000...just to be in the NICU each day. Yes, $8,000 - A DAY. In addition are all the individual doctors' costs, lab tests, procedures, etc. And trust me there are a lot of them. So even if you have really solid insurance, as we do, you're likely looking at a 10% bill unless you really do have Cadillac stuff that covers everything at 100%. Let's do some quick math shall we? $8K/day x 60 days = OH S&*%. OH S&*% x 10% = HOLY CRAP. HOLY CRAP, it turns out, is likely now covered by this little known Washington State Medicaid program. Dear sweet baby Jesus in heaven thank you for the government. And I will repeat this statement in the face of anyone who would like to tell me this isn't a good thing. So there.
So tonight we will celebrate this little victory in our life with some roasted lamb, potatoes with dill and roasted asparagus. And I will have some wine. And it will be good. And hopefully we won't have a Debbie Downer day tomorrow...fingers crossed.
And now, for some pictures from this morning's festivities...Enjoy!
So the bath was high comedy. Leo has to have all of his sensors and other things stuck to him removed, and then he can come out and be bathed in a small little plastic bin. Note to new/expectant parents: As with so much of the baby crap we are led to believe we need, you probably don't need anything super fancy for bathing your newborn...I'm now thinking the kitchen sink literally would do quite nicely. So we start at his face and work our way down, Jay and I taking turns wiping his parts ("I want to wipe that, no me!"), getting into the creases (he now has chub!), finally working our way to the nether parts and then washing his head (another note, the head is last so they don't get as cold, good tip!). And then it was on to Dad's chest for snuggle time. And he was out...Leo that is.
So as we're sitting there chatting, the very nice social worker lady comes over to talk to us. One of the many things we love about Swedish is that they have a full team of folks at our disposal - therapists, social workers, lactation (even though they're weird), etc. - all there to help us out however we need. It's pretty fantastic. So anyway, social worker lady asks us if we're going to apply for Medicaid. Um, Medicaid? No, we have insurance. Oh, this is supplemental, for Leo. And it covers whatever your insurance doesn't...deductibles, out of pocket maximums, whatever percentage your insurance won't cover, etc. UM, EXCUSE ME?!?!?! Oh yes, most everyone who goes through the NICU applies for it, unless you're with Microsoft or Boeing or the government and have 100% coverage for everything. OH MY GOD! SERIOUSLY!?!? But we have jobs and income, surely it doesn't apply to us. No, it does, it's not based on your income but on Leo's. So unless he has a trust fund set up somewhere that would count as "income" (I hold back outright laughter at this) he's covered. I'll get you the paperwork and you can fill it out and give it back to me and I'll handle getting it filed. Um, OK - that would be awesome! OH MY GOD! WE JUST WON THE LOTTERY!!! While this may seem like perhaps an overstatement, it's not and let me tell you why. We found out today that the NICU daily bill is roughly $8,000...just to be in the NICU each day. Yes, $8,000 - A DAY. In addition are all the individual doctors' costs, lab tests, procedures, etc. And trust me there are a lot of them. So even if you have really solid insurance, as we do, you're likely looking at a 10% bill unless you really do have Cadillac stuff that covers everything at 100%. Let's do some quick math shall we? $8K/day x 60 days = OH S&*%. OH S&*% x 10% = HOLY CRAP. HOLY CRAP, it turns out, is likely now covered by this little known Washington State Medicaid program. Dear sweet baby Jesus in heaven thank you for the government. And I will repeat this statement in the face of anyone who would like to tell me this isn't a good thing. So there.
So tonight we will celebrate this little victory in our life with some roasted lamb, potatoes with dill and roasted asparagus. And I will have some wine. And it will be good. And hopefully we won't have a Debbie Downer day tomorrow...fingers crossed.
And now, for some pictures from this morning's festivities...Enjoy!
Friday, April 16, 2010
Milestones and Hockey
So I'm thinking it might be good to back up a bit and recap where we've been with our little journey through the NICU so that it makes more sense when I post updates about how Leo is doing now. So here goes...
Week 1 - From the first day Leo was in the NICU (March 23) through that first week it was really all about stabilizing him and correcting the damage that was done as he was declining in the womb so that he could, well, survive. Yeah that was pretty much the other option. I don't live there, believe me, but it's helpful perspective to keep in mind. So he went on a ventilator for his breathing, had lots of tests and blood draws, got an IV with a customized gatorade blend just for him (fancy!), etc. He was also under the phototherapy lights to help with his color. He was pretty darn sick right out of the gates so he had a whole lot of attention. Less attention is better, by the way. That's sort of an interesting lesson, no?
Week 2 - The vent came out after about a week, which was hugely exciting for me and Jay (hubby). He then went on a CPAP with crazy head gear - this is basically a pressurized oxygen tool that goes into the nose, versus needing to go down his throat like the vent. I think it was also during this week that he stepped down again on his breathing to the vapotherm which is less pressure than the CPAP and doesn't have the head gear. He then stepped down again to the nasal cannula which is the lowest form of assisted oxygen before going off everything altogether. He also got a feeding tube for breast milk during this time which meant...you guessed it...lots of pumping for momma. Oh the pumping...I could probably do another whole blog on pumping alone, but I'll spare the men who might be reading this and just say...pumping blows. BUT knowing that you're providing sustenance for your kid really is some good motivation. And, it's gotten way easier for me so that always helps. But can I just ask why are all the lactation folks weird old ladies with crazy make-up? I'm just saying. It's weird. We also had an infection scare at the end of this week that cleared up very quickly but forced him to start over on his feeds. Oh the ups and downs. It's a cliche but it's true.
Week 3 - We had a minor bummer early in the week as Leo couldn't hack the nasal cannula and had to go back on vapotherm. He also had another transfusion this week. Interesting point on blood transfusions - they use a single donor for the preemies. So they get all of the blood from one donor and then split it up into portions presuming that most preemies need more than one transfusion. This then reduces the risks associated with transfusions. You learn something new everyday. Both things perked him right up and allowed him to focus on feeding and growing which is really the big focus right now aside from breathing. He also managed to start pooping more regularly this week and therefore didn't need as many "silver bullets" as we call them - suppositories as they are officially known.
Week 4- We're in the middle of week four right now and he's still on the vapotherm though his oxygen level is slowly coming down which is an indicator that they may try him on the cannula again in a few days. He had a few regurgitations over the last couple of days which means his tummy is just trying to catch up to the increased feeds. But other than that he's doing well. He's also now 34 weeks gestational age which is a milestone in terms of what they expect of him on the breathing front. He doesn't have as much latitude now in terms of saturation levels, etc. so he can set off the alarms more easily. Getting used to ignoring alarms is an odd thing, but the sooner you can get comfortable with all the noises in the NICU the sooner you stop freaking out at each one of them. I say "you" and really I mean "me." OH, another fun milestone today was that Leo was in a onesie when I went to visit. He looks like a normal baby! The preemie size onesie actually sort of, almost, fits him! And he's up over 3lbs this week, more progress.
Funny Moments - There are really so many...one that makes me smile is when Leo pooped into my hand - full on projectile. It won't be the last time I'm sure but these little moments of normalcy are pretty fantastic. Also funny was when one of our friends, a man with no kids (important context), was visiting Leo with me. There can only be one visitor with a parent at a time so it was just me and our friend. Then lactation comes up to check on how I'm doing and said man with no children is standing in between me and the crazy lactation lady who is talking about nipples and other such things and it was all I could do not to burst out laughing as I'm looking at his deer-in-headlights expression. Sigh. Good times.
Oh and tonight's Game 2 in the Western Conference Quarterfinals (Hockey) so Jay and I will be parked in front of the tube cheering on our beloved Wings. See, now the Hockey reference makes sense.
Week 1 - From the first day Leo was in the NICU (March 23) through that first week it was really all about stabilizing him and correcting the damage that was done as he was declining in the womb so that he could, well, survive. Yeah that was pretty much the other option. I don't live there, believe me, but it's helpful perspective to keep in mind. So he went on a ventilator for his breathing, had lots of tests and blood draws, got an IV with a customized gatorade blend just for him (fancy!), etc. He was also under the phototherapy lights to help with his color. He was pretty darn sick right out of the gates so he had a whole lot of attention. Less attention is better, by the way. That's sort of an interesting lesson, no?
Week 2 - The vent came out after about a week, which was hugely exciting for me and Jay (hubby). He then went on a CPAP with crazy head gear - this is basically a pressurized oxygen tool that goes into the nose, versus needing to go down his throat like the vent. I think it was also during this week that he stepped down again on his breathing to the vapotherm which is less pressure than the CPAP and doesn't have the head gear. He then stepped down again to the nasal cannula which is the lowest form of assisted oxygen before going off everything altogether. He also got a feeding tube for breast milk during this time which meant...you guessed it...lots of pumping for momma. Oh the pumping...I could probably do another whole blog on pumping alone, but I'll spare the men who might be reading this and just say...pumping blows. BUT knowing that you're providing sustenance for your kid really is some good motivation. And, it's gotten way easier for me so that always helps. But can I just ask why are all the lactation folks weird old ladies with crazy make-up? I'm just saying. It's weird. We also had an infection scare at the end of this week that cleared up very quickly but forced him to start over on his feeds. Oh the ups and downs. It's a cliche but it's true.
Week 3 - We had a minor bummer early in the week as Leo couldn't hack the nasal cannula and had to go back on vapotherm. He also had another transfusion this week. Interesting point on blood transfusions - they use a single donor for the preemies. So they get all of the blood from one donor and then split it up into portions presuming that most preemies need more than one transfusion. This then reduces the risks associated with transfusions. You learn something new everyday. Both things perked him right up and allowed him to focus on feeding and growing which is really the big focus right now aside from breathing. He also managed to start pooping more regularly this week and therefore didn't need as many "silver bullets" as we call them - suppositories as they are officially known.
Week 4- We're in the middle of week four right now and he's still on the vapotherm though his oxygen level is slowly coming down which is an indicator that they may try him on the cannula again in a few days. He had a few regurgitations over the last couple of days which means his tummy is just trying to catch up to the increased feeds. But other than that he's doing well. He's also now 34 weeks gestational age which is a milestone in terms of what they expect of him on the breathing front. He doesn't have as much latitude now in terms of saturation levels, etc. so he can set off the alarms more easily. Getting used to ignoring alarms is an odd thing, but the sooner you can get comfortable with all the noises in the NICU the sooner you stop freaking out at each one of them. I say "you" and really I mean "me." OH, another fun milestone today was that Leo was in a onesie when I went to visit. He looks like a normal baby! The preemie size onesie actually sort of, almost, fits him! And he's up over 3lbs this week, more progress.
Funny Moments - There are really so many...one that makes me smile is when Leo pooped into my hand - full on projectile. It won't be the last time I'm sure but these little moments of normalcy are pretty fantastic. Also funny was when one of our friends, a man with no kids (important context), was visiting Leo with me. There can only be one visitor with a parent at a time so it was just me and our friend. Then lactation comes up to check on how I'm doing and said man with no children is standing in between me and the crazy lactation lady who is talking about nipples and other such things and it was all I could do not to burst out laughing as I'm looking at his deer-in-headlights expression. Sigh. Good times.
Oh and tonight's Game 2 in the Western Conference Quarterfinals (Hockey) so Jay and I will be parked in front of the tube cheering on our beloved Wings. See, now the Hockey reference makes sense.
Thursday, April 15, 2010
The story...
Like many 30-somethings, my hubby and I embarked on the adventure of parenthood this year, and were expecting our first child, a boy, right around the end of May. My pregnancy had been flawless - dare I say EASY. No puking, a little tired, all tests normal, minimal aches, etc. I would think to myself, "gosh, maybe I was made for this baby making stuff, this is going so well!" I fully expected to have a perfectly normal delivery. I can do this. I'm a sturdy girl. I should've known that my Irish/Catholic heritage would bite me in the ass just to teach me a lesson.
And so it was in the 30th week of my pregnancy that I started noticing little Leo (we already had his name picked out...this proved handy) wasn't kicking as much as he usually did. Now, he hadn't ever really been a big kicker. But I could always count on feeling him right around the same time each day. First thing in the morning before I got up - check. Late at night as I was going to sleep - check. After I ate - check. But right around my 30th week I wasn't feeling him all that much anymore. I had an appointment to see my doc on Friday, March 26. On Tuesday, March 23 I called to check if this was something I should worry about. They said to come in - "just to be safe, no harm in checking." No, of course not. No harm indeed.
March 23, 1 p.m. - Ultrasound. Hubby comes to join me, this'll be fun! Yay, look at little Leo! He's so much bigger than at our last ultrasound. Everything looks fine. Thanks ultrasound lady!
3 p.m. - Stress test at Swedish Ballard, hubby still with me. (note: this is where I had planned to deliver). Hi there nice nurse lady. This should only take 30 minutes you say? Great, sounds good. Chatting, chatting, chatting. Oh some fruit juice? To see if that helps increase his movements? Ok sounds great, cranberry please. Thanks. An hour later, we decide hubby needs to go home to let out the dogs, I'm certain I won't be much longer. Ok, bye honey. Five minutes later, oh you need me to stay? My doctor's coming over? Really, get into a gown? Oh, ok. Five more minutes later - wait, what? Baby's heart rate dropping - MUST BE DELIVERED NOW. What?! Call hubby - turn around NOW.
4:30-5:30 p.m. - Oh my god, oh my god, oh my god, oh my god. Repeat.
5:34 p.m. - Leo delivered via emergency c-section and transported to Swedish First Hill NICU. OB says to me as I'm being wheeled into recovery - "you're never going to be able to deliver naturally, next time will be a c-section too." Um, ok. You couldn't wait to share that until a wee bit later after said trauma? Thanks Doc.
7:30 p.m. - Me transported to Swedish First Hill...puking in the ambulance. Awesome.
Over the next couple of days as I was recovering, Leo was getting urgent care - lots of tests, a ventilator, etc., etc. All was going well, considering how sick he was.
And thus began our journey through the NICU.
And so it was in the 30th week of my pregnancy that I started noticing little Leo (we already had his name picked out...this proved handy) wasn't kicking as much as he usually did. Now, he hadn't ever really been a big kicker. But I could always count on feeling him right around the same time each day. First thing in the morning before I got up - check. Late at night as I was going to sleep - check. After I ate - check. But right around my 30th week I wasn't feeling him all that much anymore. I had an appointment to see my doc on Friday, March 26. On Tuesday, March 23 I called to check if this was something I should worry about. They said to come in - "just to be safe, no harm in checking." No, of course not. No harm indeed.
March 23, 1 p.m. - Ultrasound. Hubby comes to join me, this'll be fun! Yay, look at little Leo! He's so much bigger than at our last ultrasound. Everything looks fine. Thanks ultrasound lady!
3 p.m. - Stress test at Swedish Ballard, hubby still with me. (note: this is where I had planned to deliver). Hi there nice nurse lady. This should only take 30 minutes you say? Great, sounds good. Chatting, chatting, chatting. Oh some fruit juice? To see if that helps increase his movements? Ok sounds great, cranberry please. Thanks. An hour later, we decide hubby needs to go home to let out the dogs, I'm certain I won't be much longer. Ok, bye honey. Five minutes later, oh you need me to stay? My doctor's coming over? Really, get into a gown? Oh, ok. Five more minutes later - wait, what? Baby's heart rate dropping - MUST BE DELIVERED NOW. What?! Call hubby - turn around NOW.
4:30-5:30 p.m. - Oh my god, oh my god, oh my god, oh my god. Repeat.
5:34 p.m. - Leo delivered via emergency c-section and transported to Swedish First Hill NICU. OB says to me as I'm being wheeled into recovery - "you're never going to be able to deliver naturally, next time will be a c-section too." Um, ok. You couldn't wait to share that until a wee bit later after said trauma? Thanks Doc.
7:30 p.m. - Me transported to Swedish First Hill...puking in the ambulance. Awesome.
Over the next couple of days as I was recovering, Leo was getting urgent care - lots of tests, a ventilator, etc., etc. All was going well, considering how sick he was.
And thus began our journey through the NICU.
I'm blogging!
I've never really felt the urge to blog. I've read plenty of great blogs out there but never particularly felt called to post daily or weekly musings on a particular topic. Until now. You see, life has thrown me a curveball. And by "me" I mean myself and my husband and our newborn, Leo who found ourselves in the NICU at Seattle's Swedish Hospital a full 10 weeks ahead of Leo's due date.
This blog is meant to be a way for me to share our experiences with NICU life - the good, bad and ugly. Selfishly I want a place to vent, but if this helps anyone who might be going through the same thing that would be even better. Enjoy!
This blog is meant to be a way for me to share our experiences with NICU life - the good, bad and ugly. Selfishly I want a place to vent, but if this helps anyone who might be going through the same thing that would be even better. Enjoy!
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