It's sort of fitting that my 200th post falls on the one year anniversary of Olivia's Norwood. I went back to re-read my entry this time last year and was actually a bit disappointed with myself that I didn't include more details but I remember that day like it was yesterday. The night before Olivia's surgery marked the first time in my whole life that I did not sleep a wink because I was so full of thoughts, emotions and of course worry. I was still a patient at the hospital and I think Mike put in a good word for us with his peeps because I had what I would call a presidential suite of a hospital room. It was meant to hold four patients but only had two beds and enough room for us to seat virtually the entire family if we wanted - which we didn't. (Sorry!) Anyway, that night I laid there and watched endless hours of whatever was on USA while Brian was in the other bed snoring away his exhaustion from repeat trips back and forth to the NICU with family members.
They had told us that they would take her into the OR around 7:30 or 8, so I wanted to get down to the NICU with plenty of time to be with her before she was wheeled off. Around 6 I had enough of waiting around and we went down to see Livvy. The staff was already getting everything ready and the nurses had her belongings packed up and handed them to me to take back to my room until she was settled post-op in the PSHU. It was strange to me then that feeling of holding my baby's belongings without ever actually holding my baby before. Then came the news that rocked me a bit - apparently since she'd already been on the vent for three full days and never really cried more than a few minutes, she had a partial lung collapse. So my first question was - "is the surgery off?" Not that I was looking forward to it, but I was so mentally prepared for it to happen on Tuesday March 30th, that if it didn't, I was going to be crushed. Not the case they assured me, respiratory was on their way down and the Cardiac Fellow assigned to her was barking orders at everyone to make sure that they knew Olivia was about to head down to the OR with Dr. Ilbawi and getting the lung re-inflated was going to be everyone's priority until it was resolved. I felt sort of bad for the nurses and others as they were getting chewed out, but ultimately they did get the lung going again and the next x-ray pre-surgery looked great.
Finally after all the thumping on her chest by the respiratory therapist, x-rays, blood gasses, etc; I was able to hold her. By hold her I mean have her placed on my lap while I tried to take in the most shallow breaths so as not to disturb any of the tubes and wires and Brian just sort of hovered over both of us. As I did, I had the image from the movie Dumbo where his mom is locked up in the cage and he's outside it with his little trunk just reaching for her and "Baby Mine" is playing in the background. I just felt like I was chained there and she was going to go off and there wasn't anything I could do about it. Which in reality was all true, I knew the moment was going to come where I was going to have to give her back to the staff and she was going to go into the OR for an undetermined fate. We had done our part by researching doctors, hospitals the diagnosis itself and I had rested (slight fib) and relaxed as much as I could for the duration of my pregnancy in hopes of getting her to a good size and the rest was out of our hands. I knew and still know to this day that whenever we kiss her goodbye for a surgery, cath, any cardiac procedure; there's no telling of the outcome.
I actually made the decision that I would leave the NICU just before they wheeled her out to head back to my room. There's a lot of things that I can handle, but kissing your baby right outside the doors to the OR is about one of the worst things I've had to do. I did it with the pre-Glenn cath and then the Glenn and of course I'll do it as needed going up to the Fontan; but I gave myself a pass heading into the Norwood. They gave us three updates via phone directly into my room throughout the surgery and the last one was just to let us know that they were taking her off bypass and we could meet her in the PSHU within the hour. To this day I remember the sigh of relief that we had at least started down the journey and gotten one surgery behind us makes me feel a little more relaxed even today as I type this. I called the grandparents and gave them the medical scoop and then I made a phone call to my cousin Mari to give her a verbal recap of the day's events. She had a little extra vested interest since her birthday coincides with what is now Olivia's Norwoodiversary. I thought it was more than fitting seeing as how Mari and I have always been there for each other and I took it as an extra good omen for things to come and thank goodness it's been all that and more.
Cinder-Livvy
Wednesday, March 30, 2011
Tuesday, March 29, 2011
One Year Old
Dear Olivia,
You're now a year old and it was a little over a year ago that I was able to see you for the first time. I remember it was like yesterday getting wheeled into the NICU and there you were already on the ventilator, but oh so pink and quite honestly, much bigger than I had expected. You were sporting all your beautiful silky hair in a mohawk that your silly nurse kept you styled in for your stay in the NICU. I could hold your hand, stroke your head and legs and only look at your chest that was so smooth and without scars - it was hard to imagine that it was only going to stay for a few days. Even more, you looked so great; I wanted to say that everything was fine and just wheel you out of there with me. But I knew that wasn't the right thing to do nor was it what was really best for you.
So off you went on March 30th, I held you for the very first time even with all your wires and tubes holding and kissing you and just soaking in as much of you as possible. I knew that it was possible that you may have not made it through that first surgery, I just didn't think it was likely. What has brought me comfort all these months and perhaps it is naive, but I'll tell you anyway. Your Great Grandma on Nonna's side was somewhat of a force to be reckoned with and she held the extended family together and even though she passed away a few months before I found out that I was pregnant with you; I just knew that you would be a girl and would be special. Especially to your Nonna, those first few months without her mother were very hard for her and then when she found out she was going to be a Grandma, she had something positive to look forward to. When we found out about just how special you were with your heart, Nonna worried and had sleepless nights because that's what she does when something weighs on her mind. But I knew that you were going to pick up where my Grandma left off and that's coming out fighting and full of attitude.
This past year (really sixteen months or so) you have been nothing short of awe inspiring. If you're feeling good, you have a smile that can light up a room and is contagious. The sound of your laughter is by far one of the best things that I have ever heard in my life and makes me stop doing everything that I'm doing just to take it in. You have had your Daddy wrapped around your finger since the minute you were born and he's your main man and protector. You come by Mommy when you want to give and get love - saving all your sweet kisses for me and when you put your chubby little hands on my cheeks and just look at me and smile-I want to keep you in that moment forever. Olivia, you have brought so much good into so many people's lives; making them stop and think about what's important out of life and how to be better people. I am so proud to have you as my daughter. Happy First Birthday Sweet Baby Girl!
Love Forever and Always,
Mommy
You're now a year old and it was a little over a year ago that I was able to see you for the first time. I remember it was like yesterday getting wheeled into the NICU and there you were already on the ventilator, but oh so pink and quite honestly, much bigger than I had expected. You were sporting all your beautiful silky hair in a mohawk that your silly nurse kept you styled in for your stay in the NICU. I could hold your hand, stroke your head and legs and only look at your chest that was so smooth and without scars - it was hard to imagine that it was only going to stay for a few days. Even more, you looked so great; I wanted to say that everything was fine and just wheel you out of there with me. But I knew that wasn't the right thing to do nor was it what was really best for you.
So off you went on March 30th, I held you for the very first time even with all your wires and tubes holding and kissing you and just soaking in as much of you as possible. I knew that it was possible that you may have not made it through that first surgery, I just didn't think it was likely. What has brought me comfort all these months and perhaps it is naive, but I'll tell you anyway. Your Great Grandma on Nonna's side was somewhat of a force to be reckoned with and she held the extended family together and even though she passed away a few months before I found out that I was pregnant with you; I just knew that you would be a girl and would be special. Especially to your Nonna, those first few months without her mother were very hard for her and then when she found out she was going to be a Grandma, she had something positive to look forward to. When we found out about just how special you were with your heart, Nonna worried and had sleepless nights because that's what she does when something weighs on her mind. But I knew that you were going to pick up where my Grandma left off and that's coming out fighting and full of attitude.
This past year (really sixteen months or so) you have been nothing short of awe inspiring. If you're feeling good, you have a smile that can light up a room and is contagious. The sound of your laughter is by far one of the best things that I have ever heard in my life and makes me stop doing everything that I'm doing just to take it in. You have had your Daddy wrapped around your finger since the minute you were born and he's your main man and protector. You come by Mommy when you want to give and get love - saving all your sweet kisses for me and when you put your chubby little hands on my cheeks and just look at me and smile-I want to keep you in that moment forever. Olivia, you have brought so much good into so many people's lives; making them stop and think about what's important out of life and how to be better people. I am so proud to have you as my daughter. Happy First Birthday Sweet Baby Girl!
Love Forever and Always,
Mommy
Thursday, March 24, 2011
My Three Musketeers
Sometimes, I think that society gives guys in their 20's sort of a bum rap. I am so guilty of this it's not even funny...always ready to harass guys especially those in fraternities (sorry Pikes if any of you read this) often with the mindset that guys in this particular age group get increasingly, mmm how can I say - I don't know if dumber is the word, but they are definitely more apt to make questionable choices as a group than they would as individuals. Anywayyyyyy, given that Liv's birthday is right around the corner I wanted to convey my appreciation for three great male friends that I have who have really helped me through the past year whether or not they realize it. Ladies- there are many of you that have been extremely supportive but I just had to give props to the guys for once.
First, would be Tim now fellow parent to Cohen (who may or may not be my future son in law - I'm just sayin). Tim and his wife Madison have followed Olivia's journey since I started up the blog and have been great supporters through all of the pre-natal appointments, subsequent procedures, etc. He's always taken the time to email or text following cardiology appointments just to make sure that everything is kosher with the Livster and regularly asks me for updates on her day to day progress and milestones. When there was a Twitter update about a heart baby Olivia not doing well - it was Tim who texted me late at night just to make sure that my Olivia was safe and sound in her crib just to be absolutely sure.
Mikey is a former co-worker who started off as the shy guy in the department, but quickly made up for lost time once we got him out to our Friday lunches. He's quick witted and self-depreciating in such an admirable way. Definitely the type of person that you find yourself mouth open aghast at some of the things he says and yet laughing until you cry because it's just so darn funny the way that he goes about saying it. If it were anyone else, you would be offended but he's just so likable and genuine that you can't ever be mad even if he is an "Angry Italian" as I like to call him. (I'm half Italian - so it's okay). The office just isn't the same without him around.
Last but not least is Kyle, who I can only describe as one half of Laurel and Hardy. We've been friends for going on five years now and both grown up considerably in that time - sometimes by choice and other times because of the hands we were dealt. He will occasionally pop by my office heading out to lunch and see my face and know that I've just been reading up on a baby that is either not doing well or has passed away and then takes it upon himself to try and boost my spirits the rest of the day. Like Mike, his sense of humor is contagious and you can't help but smile in spite of yourself sometimes.
Between these three guys, they have heard more than their fair share of sad stories from me over lunches, coffee, and perhaps the occasional alcoholic beverage. Although they don't condone tears from me - they won't avoid me when I get a little weepy from time to time. I didn't realize till I was giving it deep thought at how well they all relate to me that they've each had a very close relative struggle with illnesses and disabilities. As sad as it makes me for what they've had to deal with thus far; I am all the more appreciative for them to be my friends. Thank you guys!!!
First, would be Tim now fellow parent to Cohen (who may or may not be my future son in law - I'm just sayin). Tim and his wife Madison have followed Olivia's journey since I started up the blog and have been great supporters through all of the pre-natal appointments, subsequent procedures, etc. He's always taken the time to email or text following cardiology appointments just to make sure that everything is kosher with the Livster and regularly asks me for updates on her day to day progress and milestones. When there was a Twitter update about a heart baby Olivia not doing well - it was Tim who texted me late at night just to make sure that my Olivia was safe and sound in her crib just to be absolutely sure.
Mikey is a former co-worker who started off as the shy guy in the department, but quickly made up for lost time once we got him out to our Friday lunches. He's quick witted and self-depreciating in such an admirable way. Definitely the type of person that you find yourself mouth open aghast at some of the things he says and yet laughing until you cry because it's just so darn funny the way that he goes about saying it. If it were anyone else, you would be offended but he's just so likable and genuine that you can't ever be mad even if he is an "Angry Italian" as I like to call him. (I'm half Italian - so it's okay). The office just isn't the same without him around.
Last but not least is Kyle, who I can only describe as one half of Laurel and Hardy. We've been friends for going on five years now and both grown up considerably in that time - sometimes by choice and other times because of the hands we were dealt. He will occasionally pop by my office heading out to lunch and see my face and know that I've just been reading up on a baby that is either not doing well or has passed away and then takes it upon himself to try and boost my spirits the rest of the day. Like Mike, his sense of humor is contagious and you can't help but smile in spite of yourself sometimes.
Between these three guys, they have heard more than their fair share of sad stories from me over lunches, coffee, and perhaps the occasional alcoholic beverage. Although they don't condone tears from me - they won't avoid me when I get a little weepy from time to time. I didn't realize till I was giving it deep thought at how well they all relate to me that they've each had a very close relative struggle with illnesses and disabilities. As sad as it makes me for what they've had to deal with thus far; I am all the more appreciative for them to be my friends. Thank you guys!!!
Tuesday, March 22, 2011
The Birthday Week
In less than a week, Olivia's going to be a year old. Where did the time go? This weekend, there was a lot of running for party supplies and prep. I did some cooking with Nonno to get ready for next weekend. We also did lunch with Keaton and his parents to celebrate our babies. Like his mom said, "It's just great to get together and celebrate the fact that we're all still here one year later". That would have seemed like such an outrageous thing to me a few years ago, but now there are no truer words spoken. It is amazing that both babies are here and thriving. Unfortunately Mr. Keaton was not very happy to see his bully Olivia, I think he remembered their last playdate when Olivia was a little agressive about getting a smooch from her buddy. Either way, we got to hang out all together as our little heart family and talk our talk like a different language to everyone else.
Keaton - just so you know, yesterday was Olivia's turn to have a meltdown. Either she is cutting her top teeth or she's getting a cold. By the time I came home mid-PT session she was in hysterics and from what Nonna said, it had been that way all day. She was a bit feverish and a dose of tylenol followed with an unheard of third nap of the day seemed to help, but it was plainly obvious that she's not quite herself. The EI (Early Intervention) 6 month assessment was non eventful. They're thrilled with her progress and want to keep her in the program for another 6 months and see what sort of additional strides she will make in that time. One goal is to have her climbing up stairs - normally parents really try to avoid and discourage this whereas in our situation we need to encourage her to develop enough upper body strength to do this and meet milestones.
By far though, the largest milestone is that she's all but made it to her first birthday.
Keaton - just so you know, yesterday was Olivia's turn to have a meltdown. Either she is cutting her top teeth or she's getting a cold. By the time I came home mid-PT session she was in hysterics and from what Nonna said, it had been that way all day. She was a bit feverish and a dose of tylenol followed with an unheard of third nap of the day seemed to help, but it was plainly obvious that she's not quite herself. The EI (Early Intervention) 6 month assessment was non eventful. They're thrilled with her progress and want to keep her in the program for another 6 months and see what sort of additional strides she will make in that time. One goal is to have her climbing up stairs - normally parents really try to avoid and discourage this whereas in our situation we need to encourage her to develop enough upper body strength to do this and meet milestones.
By far though, the largest milestone is that she's all but made it to her first birthday.
Friday, March 18, 2011
Lucky
Yesterday being St. Patrick's day and all the luck of the Irish, etc etc I've decided to take a nudge from fellow heart dad Tommy and make sure that everyone knows that we know how lucky we are. We are about a week away from Olivia's first birthday. She has completely rejected all pureed baby food at this point in favor of real food with texture, taste and that requires some chewing on her part. Case in point, she took a few bites off a pickle that I was snacking on yesterday and was angry with me when I finished it without being able to have anymore. We're amazingly lucky that eating has not been a struggle for Olivia.
I was gone Tuesday and Wednesday in AZ for work and yesterday while we were playing on the floor she just decided she was going to crawl. Now let me tell you, I don't think there's anything cuter than watching a little baby diaper butt crawling around, but it's almost magical to watch one crawl who has had so many obstacles to overcome. She was sporting "The Boss" shirt complete with shamrocks for the occasion and it was hilarious to see it because it was almost a belly shirt and her numerous arm rolls looked a little constricted around the sleeves. So lucky that she's strong enough and feeling well enough to be nosy and get into everything.
We've basically made it through the first year. As I've watched countless parents say goodbye to their little ones, we have a birthday candle to blow out and wishes to be made for the next year. LUCKY and so grateful.
I was gone Tuesday and Wednesday in AZ for work and yesterday while we were playing on the floor she just decided she was going to crawl. Now let me tell you, I don't think there's anything cuter than watching a little baby diaper butt crawling around, but it's almost magical to watch one crawl who has had so many obstacles to overcome. She was sporting "The Boss" shirt complete with shamrocks for the occasion and it was hilarious to see it because it was almost a belly shirt and her numerous arm rolls looked a little constricted around the sleeves. So lucky that she's strong enough and feeling well enough to be nosy and get into everything.
We've basically made it through the first year. As I've watched countless parents say goodbye to their little ones, we have a birthday candle to blow out and wishes to be made for the next year. LUCKY and so grateful.
Wednesday, March 9, 2011
She's on the Move
Olivia can't make up her mind these days. She's struggling with the decision of whether she wants to crawl or walk first. There's been a lot of scooting around and yesterday she gave me the biggest scare of our lives so far (which is saying something since you know - her whole heart thing). I had her in my room on the floor while I was getting some things around and I heard a weird scraping sound, only to see that she had scooched herself about 10 feet to get over to a power cord that belonged to a very heavy humidifier filled with water about to fall on her head. I managed to grab it right as it was coming off the dresser and she was none the wiser. I literally had to sit down on the floor to get rid of the immediate dizzy feeling that I had from that close call. I made sure to inform Nonna that Olivia is now on the go and nothing is out of her reach.
She's decided that she's not really a fan of pureed foods any longer too. In fact, she really wants whatever you've got on your plate. I mean at least a taste and really there hasn't been much that she doesn't like so long as it's something that you're not supposed to be giving a one year old that just has two teeth with another two or three about to cut imminently. It's making mealtime a joy with a lot of fussing on her end and Mommy racking her brain trying to think how mealtimes are going to go in the future. It seems like she would do fine having the same that we have for dinner so long as I make some to the side without all the spices (just about everything I make has spice).
Let's see, what else oh yes, TANTRUMS. I have been "blessed" to watch her now thrash and really share that high pitched ear piercing glass shattering sound when she wants something. Case in point, Sunday night, she really really wanted this DVD of P.S. I love You that was on the coffee table and there was no reasoning with her or subbing it out for a book. I told her it was a good movie, but nothing to get too carried away about as she sat there and cried all the while putting out her arms and opening and closing her hands just begging for one of us to pick her up and console her. Eventually I went down and sat on the floor across from her and started quietly trying to hand her toys and books but refusing to hug her or really comfort her. (Umm...this pretty much sucked, I felt like a terrible person but I know it's something that needs to be nipped in the bud now before she thinks she is Queen of Everyone's Universe). I'm fairly certain that if she had been a little stronger she would have flung some of the toys clear across the room she was that angry with me. Eventually though, she settled herself down and picked up one of the toys that had been right there all along. Sigh...I would have preferred that she looked a little more like me instead of picking up all of my bad personality traits.
She's decided that she's not really a fan of pureed foods any longer too. In fact, she really wants whatever you've got on your plate. I mean at least a taste and really there hasn't been much that she doesn't like so long as it's something that you're not supposed to be giving a one year old that just has two teeth with another two or three about to cut imminently. It's making mealtime a joy with a lot of fussing on her end and Mommy racking her brain trying to think how mealtimes are going to go in the future. It seems like she would do fine having the same that we have for dinner so long as I make some to the side without all the spices (just about everything I make has spice).
Let's see, what else oh yes, TANTRUMS. I have been "blessed" to watch her now thrash and really share that high pitched ear piercing glass shattering sound when she wants something. Case in point, Sunday night, she really really wanted this DVD of P.S. I love You that was on the coffee table and there was no reasoning with her or subbing it out for a book. I told her it was a good movie, but nothing to get too carried away about as she sat there and cried all the while putting out her arms and opening and closing her hands just begging for one of us to pick her up and console her. Eventually I went down and sat on the floor across from her and started quietly trying to hand her toys and books but refusing to hug her or really comfort her. (Umm...this pretty much sucked, I felt like a terrible person but I know it's something that needs to be nipped in the bud now before she thinks she is Queen of Everyone's Universe). I'm fairly certain that if she had been a little stronger she would have flung some of the toys clear across the room she was that angry with me. Eventually though, she settled herself down and picked up one of the toys that had been right there all along. Sigh...I would have preferred that she looked a little more like me instead of picking up all of my bad personality traits.
Monday, March 7, 2011
Celebrating Travis
Yesterday was the Celebration of Life ceremony for Travis. Being on the other side of the country, his family asked all those supporting them in thought and prayer to wear red for Travis.
Tuesday, March 1, 2011
11 Months Old
All right, I'm a couple of days late, forgive me! Olivia's 11 month birthday came and went. We went shopping last week and actually found the outfit that she's going to wear for her birthday fiesta - although it's likely that it'll be one of many that she wears that weekend if she gets into her cake the way that her male counterparts do. :) We had a somewhat miserable PT session yesterday since Miss Sue; our normal PT is off recovering from foot surgery. Her replacement is nice enough but doesn't necessarily understand how to take time to get little missy to warm up to her before diving right into the playing.
Olivia wanted no part of any of it. I was a few minutes late getting home from the office and was greeted with hysterics. Screaming, shaking, profuse tears and even a little bit of sweat because she was so worked up. It took some time but we got her settled down for a halfway decent assessment of her skills if nothing else. This new PT really wants us to push more tummy time. I'm sort of mixed about it, as time goes on, Olivia is putting herself on her tummy more trying to reach for things. I leave her there once she initiates the movement herself and let her figure out how to squirm around until she gets really ticked off. But the reception for tummy time if one of us actually puts her there is normally a failure. I'm not saying it's not worthwhile to try, I just think that she's more receptive to it if she thinks its her idea. Haha, I am soooo in for it!
The last week was a challenge in terms of getting solids in her, she just outright refused them. I think her top two teeth are coming in and she's not very happy about it. Just in the last 24-36 hours has she started eating regular homemade baby food again and taking her Enalapril like normal. We have found that anytime we give her baby tylenol via an oral syringe, she starts refusing to take her Enalapril which she loves. So, we've had to get a little sneakier by putting the Tylenol either in a bottle or in her food. I mean really, she's 11 months old and we already have to play mind games? I'll get a new pic with Fievel loaded sometime this week and also start sharing some party plans!
Olivia wanted no part of any of it. I was a few minutes late getting home from the office and was greeted with hysterics. Screaming, shaking, profuse tears and even a little bit of sweat because she was so worked up. It took some time but we got her settled down for a halfway decent assessment of her skills if nothing else. This new PT really wants us to push more tummy time. I'm sort of mixed about it, as time goes on, Olivia is putting herself on her tummy more trying to reach for things. I leave her there once she initiates the movement herself and let her figure out how to squirm around until she gets really ticked off. But the reception for tummy time if one of us actually puts her there is normally a failure. I'm not saying it's not worthwhile to try, I just think that she's more receptive to it if she thinks its her idea. Haha, I am soooo in for it!
The last week was a challenge in terms of getting solids in her, she just outright refused them. I think her top two teeth are coming in and she's not very happy about it. Just in the last 24-36 hours has she started eating regular homemade baby food again and taking her Enalapril like normal. We have found that anytime we give her baby tylenol via an oral syringe, she starts refusing to take her Enalapril which she loves. So, we've had to get a little sneakier by putting the Tylenol either in a bottle or in her food. I mean really, she's 11 months old and we already have to play mind games? I'll get a new pic with Fievel loaded sometime this week and also start sharing some party plans!
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