I spent some time earlier today with Riley and my mom at the hospital. It's so nice to walk into her cubicle in the NICU and see her bright eyes open wide and looking right at me. Granted, I'm convinced that Riley saves up her poops until I get there, but that is okay, I'm a poop-changing professional now.
Riley's nurse and case worker got the confirmation call today that she will be transported to Egleston tomorrow. They will run a series of blood work and scans as part of her pre-op admission. Thursday will be the big day ... Surgery Day (well the first of at least 2 and maybe three Surgery Days). They are anticipating that Riley will be moved back to Northside by Saturday depending on how well she does with her surgery & recovery. It will be nice to be back in a hospital that we now know like the back of our hands. Heck, I've been giving out directions to lost looking relatives. The only thing we don't know are times ... when they are going to pick her up ... what time the surgery will be. I guess we will find out all in good time. Evidently it is quite common for the transport team to call and say, "oh, we're on our way"
Tomorrow will be a day of hurry up and wait for Josh & I. Luckily Josh will be telecommuting from the hospitals tomorrow and Thursday so that we can wait around for all those particulars. Luckily I am working on a new blanket for Riley, so this will give me plenty of time to work on it and to get reading my next book club book as I am confident that Riley will be a-okay and I will be able to enjoy a night out.
Tuesday, October 26, 2010
Monday, October 25, 2010
10-25-10 8pm
So today was another good day for Riley. She gained another 1.4 ounces and we are still on schedule for the move on Wednesday and Surgery on Thursday.
Also, I think the crying is gone for the moment - I haven't cried in at least two or three days and I don't believe Michele has either. My wife's blog post from yesterday is accurate - especially the part about me being wonderful.
I have always wanted to fix people and things around me. I know in my head that this is something that I am not going to ever fix. I will not be growing the rest of her chromosome, I will not make her syndrome go away. But somewhere in the deep recesses of my fatherhood, I think that if I learn 10 more things, read for a couple more hours, hold her for 1 more minute, play with her arms and legs for a little longer, talk to her about my day - it will get better.
It won't and there are a lot of moments when I am ok with that - we will have to face each challenge as it comes about. The first challenge is feed tube and stomach surgery, 2nd is getting her home, 3rd is day care, 4th is getting big enough for another surgery, 5th is open heart surgery, 6th is therapists (physical and probably learning), 7th is getting her to eat on her own. Again, taken in a group it is a list that makes me want to breakdown and cry for the amount that we are putting my little girl through, the sacrifices that Zoey is going to have to make and honestly for the amount of work that my wife and I are going to have to exert.
But you take each one of them on their own and her first surgery doesn't seem so bad - lots of kids have feeding tubes and reflux issues that need to be fixed early on in life (heard about 2 more today). Getting her home in about 1.5 months after birth is nothing - there are kids in our unit who have been in there for over 3 months. Day care already said they are cool with her feeding tube (whether mom and I are comfortable with their comfort level is a different story). Her getting big enough doesn't seem like a problem so far as she is growing by leaps and bounds......you get the point.
I know that there are moments that I am sure that I am not handling this in a textbook manner. I'm sure I have said some things (both on this blog and in person) that I shouldn't have to some of you and for that I can only apologize. But this is my family, my beautiful wife Michele who none of my joys in life would be possible without, Zoey my first born who has brought me happiness and pride that I never knew were possible, and Riley my little flower who has taught me that there is no limit to the amount of space in my heart for those that I love. I will be here for each and every one of them till the day that I am no more and there is nothing I wouldn't give for or to them.
Also, I think the crying is gone for the moment - I haven't cried in at least two or three days and I don't believe Michele has either. My wife's blog post from yesterday is accurate - especially the part about me being wonderful.
I have always wanted to fix people and things around me. I know in my head that this is something that I am not going to ever fix. I will not be growing the rest of her chromosome, I will not make her syndrome go away. But somewhere in the deep recesses of my fatherhood, I think that if I learn 10 more things, read for a couple more hours, hold her for 1 more minute, play with her arms and legs for a little longer, talk to her about my day - it will get better.
It won't and there are a lot of moments when I am ok with that - we will have to face each challenge as it comes about. The first challenge is feed tube and stomach surgery, 2nd is getting her home, 3rd is day care, 4th is getting big enough for another surgery, 5th is open heart surgery, 6th is therapists (physical and probably learning), 7th is getting her to eat on her own. Again, taken in a group it is a list that makes me want to breakdown and cry for the amount that we are putting my little girl through, the sacrifices that Zoey is going to have to make and honestly for the amount of work that my wife and I are going to have to exert.
But you take each one of them on their own and her first surgery doesn't seem so bad - lots of kids have feeding tubes and reflux issues that need to be fixed early on in life (heard about 2 more today). Getting her home in about 1.5 months after birth is nothing - there are kids in our unit who have been in there for over 3 months. Day care already said they are cool with her feeding tube (whether mom and I are comfortable with their comfort level is a different story). Her getting big enough doesn't seem like a problem so far as she is growing by leaps and bounds......you get the point.
I know that there are moments that I am sure that I am not handling this in a textbook manner. I'm sure I have said some things (both on this blog and in person) that I shouldn't have to some of you and for that I can only apologize. But this is my family, my beautiful wife Michele who none of my joys in life would be possible without, Zoey my first born who has brought me happiness and pride that I never knew were possible, and Riley my little flower who has taught me that there is no limit to the amount of space in my heart for those that I love. I will be here for each and every one of them till the day that I am no more and there is nothing I wouldn't give for or to them.
Sunday, October 24, 2010
10/24/10 - 7:40 pm
I spent a nice afternoon with my two girls at the hospital. Zoey is absolutely precious with her little sister. She just loves holding Riley, and is so tender when she is holding her. I am so blessed to have these two little angels in my life. It amazing to me to look at a newborn picture of Zoey and see how much Riley resembles her. I am sure, even now, that they will have two very different personalities. Zoey is headstrong and independent --- to the point where it's her way of the highway. Riley seems to be much more laid back. I think she is a super tough little girl, and I am quite certain that she will continue to amaze me in everything that she will face in her life.
Riley got a chance to enjoy her bouncy seat today ... twice! Once with daddy and once with me. It seems like she really enjoys it. She was awake and enjoying the different perspective of her room, then I turn on the noise machine attached to the seat and the eyes closed almost immediately. Riley even got her first Patriots shirt today. All 4 of us were decked out for a Patriots win.
I worry for my husband, despite all of the good news we have been having lately. Josh is pulled so thin lately, between work, the hospital and his family, I don't think he knows which way to go. I know that he is not sleeping because he simply cannot turn off his brain for even a little while. Josh is an amazing man, his one true fault (although there are several superficial ones!) is that he is a "fixer". To Josh, not being able to fix anything for the people he cares about is a failure in himself. So not being able to fix the things that ail his tiny 2 week old daughter is absolutely killing him. It truly breaks my heart to see this affecting him so badly. He is trying to be so strong for everyone right now, and I know especially for me. I have been dealing with my own grief & guilt that I fear I have been sadly neglecting his feelings, and for that I am truly sorry.
Riley got a chance to enjoy her bouncy seat today ... twice! Once with daddy and once with me. It seems like she really enjoys it. She was awake and enjoying the different perspective of her room, then I turn on the noise machine attached to the seat and the eyes closed almost immediately. Riley even got her first Patriots shirt today. All 4 of us were decked out for a Patriots win.
I worry for my husband, despite all of the good news we have been having lately. Josh is pulled so thin lately, between work, the hospital and his family, I don't think he knows which way to go. I know that he is not sleeping because he simply cannot turn off his brain for even a little while. Josh is an amazing man, his one true fault (although there are several superficial ones!) is that he is a "fixer". To Josh, not being able to fix anything for the people he cares about is a failure in himself. So not being able to fix the things that ail his tiny 2 week old daughter is absolutely killing him. It truly breaks my heart to see this affecting him so badly. He is trying to be so strong for everyone right now, and I know especially for me. I have been dealing with my own grief & guilt that I fear I have been sadly neglecting his feelings, and for that I am truly sorry.
10-24-10 1:45pm
So we have a more definitive plan now. The best day for Riley's surgery will be on this Thursday, 10/28/10. So unless something changes she will be moving on Wednesday and have a couple more tests run on her over at Egleston to make sure that the doctors are not going to have any mishaps when they get in there with her.
Poop!
So, yesterday I got to experience a new first. Something that I never even experienced with Zoey.
While changing Riley's poopy diaper (and it was a big one too!), my precious, tiny daughter projectile pooped all over me! The nurse & I had to change all of Riley's clothes, and her entire bed b/c it was just covered in poop. I didn't realize that a person could poop like that! Goes to show that every kid is different. As gross as it was, it was still kind of funny
While changing Riley's poopy diaper (and it was a big one too!), my precious, tiny daughter projectile pooped all over me! The nurse & I had to change all of Riley's clothes, and her entire bed b/c it was just covered in poop. I didn't realize that a person could poop like that! Goes to show that every kid is different. As gross as it was, it was still kind of funny
10-24-10 10:30am
Sorry for no posts yesterday, but we decided to take a day off. Our little Riley had a great day yesterday getting up to 5lbs 14.5oz on Friday evening and then last night when she got weighed she was at 6lbs!!!! She may have to go on weight watchers soon. Her only issues recently has been her mucus, well that and she pooped all over her mother while she was being changed yesterday. In the 2+ weeks that Riley has been with us I have probably changed about double the amount of diapers that my wife has and no poop on these hands - I think Riley has made her choice about who is her favorite.
We are waiting to hear the official word that Riley is moving to Egleston tomorrow - her transfer is tenative right now, but we need to know that when she gets there, there will be a bed. Anyway - it has been a very calm couple of days, certainly thanks to the grandparents assistance and Zoey being a very good daughter and big sister. Zoey will be coming down to see Riley again today, so hopefully I will have some pictures to share later today. Thank you again for all of the support. It sounds very very weird to say this, but I hope Riley's surgery is early this week so we can start moving forward in our battles.
We are waiting to hear the official word that Riley is moving to Egleston tomorrow - her transfer is tenative right now, but we need to know that when she gets there, there will be a bed. Anyway - it has been a very calm couple of days, certainly thanks to the grandparents assistance and Zoey being a very good daughter and big sister. Zoey will be coming down to see Riley again today, so hopefully I will have some pictures to share later today. Thank you again for all of the support. It sounds very very weird to say this, but I hope Riley's surgery is early this week so we can start moving forward in our battles.
Friday, October 22, 2010
10/22/10 - 8:42 am
So, it's good to know that I am "normal", or so my therapist tells me. Evidently my crying jags are totally okay, and I am behaving as anyone in this kind of crazy situation would. Good to know.
Riley had a good day overall yesterday. She was sleeping nice & calmly when we first got to the hospital, but then she woke up when she heard us talking and was wide awake and seemed to be enjoying the attention from her mom & grandparents.
I went & did something "normal" for myself and got a haircut. I feel so much better just to do that one simple thing. Since my haircut was in the middle of the day, I picked up Zoey a little early from school and brought her back down to the hospital so that she could have a nice mid-week visit with her sister. Zoey is absolutely precious with Riley; she is so gentle and loving when she touches Riley. Zoey even sang a couple of songs and gave Riley some kisses for her 2 week birthday.
As excited as I am to be getting the surgery scheduled, I am coming up with a million questions. If we can get this thing officially schedule, then we can finally talk to the surgeon and maybe get some answers. First & foremost I want to know how long the surgery will take and what it actually entails. What will post-op be like? Will Riley be in pain? If so, can they give her something? When will they start using the g-tube? Right away, or does it need time to heal first? I guess these kinds of things will keep popping into my head right until surgery time.
Riley had a good day overall yesterday. She was sleeping nice & calmly when we first got to the hospital, but then she woke up when she heard us talking and was wide awake and seemed to be enjoying the attention from her mom & grandparents.
I went & did something "normal" for myself and got a haircut. I feel so much better just to do that one simple thing. Since my haircut was in the middle of the day, I picked up Zoey a little early from school and brought her back down to the hospital so that she could have a nice mid-week visit with her sister. Zoey is absolutely precious with Riley; she is so gentle and loving when she touches Riley. Zoey even sang a couple of songs and gave Riley some kisses for her 2 week birthday.
As excited as I am to be getting the surgery scheduled, I am coming up with a million questions. If we can get this thing officially schedule, then we can finally talk to the surgeon and maybe get some answers. First & foremost I want to know how long the surgery will take and what it actually entails. What will post-op be like? Will Riley be in pain? If so, can they give her something? When will they start using the g-tube? Right away, or does it need time to heal first? I guess these kinds of things will keep popping into my head right until surgery time.
Thursday, October 21, 2010
10-21-10 9:30pm
And so it starts - please explain to me how this makes mathematical/financial sense. Not human interest, heart warming, compassion sense - just mathematical/financial sense.
Two options:
1) spend 3 more days in NICU - get surgery (at a hospital that specializes in infant surgeries, so granted it might be more expensive) - spend 10 days in recovery - go home = 13-15 days in hospital/intensive care/surgery
2) spend 40 - 60 more days in NICU - get surgery (at a children's hospital that does surgeries) - spend 10 days in recovery - go home = 51-71 days in hospital/intensive care/surgery
Honestly, how is this even a debate. I could see someone fighting for the longer term care and having their insurance company put up a stink about it, but our ridiculous one decided that they were going to deny the 1st course of quicker action. Thankfully the great folks at Northside (our insurance case worker for Northside + the NICU nurse) called them up and talked them through the logic.....they finally gave in.
I knew that it was a matter of time before the ridiculousness started with the insurance company, but I expected it to be over something that would save them money - NOT COST THEM MORE!!!!!!
Yeah - and universal healthcare is supposed to be the pain in the rear - cause private is so wonderfully intelligent. I say that if it is broke, let's try and fix it.
Welcome to Holland
Yesterday I spoke with Cheri Coyle of the Southeastern 22q Support Group. She shared the following with me:
Welcome To Holland
by
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Welcome To Holland
by
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
10/21/10 - 8:45 am
Josh is on the road today for work, so it will just be me today (most likely). I have a busy day starting with seeing my therapist. I am so glad that she was able to work me in today as I think it will help to talk to someone that is completely uninvolved in Riley's life. So much has happened in the last 2 weeks, it actually feels like 2 months have gone by already.
Hopefully we will hear soon about Riley's surgery so that we can get a definite date & time on the books as they will still need to transport Riley via ambulance to the hospital. I know it's selfish, but I just want to get this going so that we can start Riley's recovery and road home. In my head, I know that getting Riley home isn't going to magically heal her, but it will help us to get back to a "normal" routine. At least what will become normal to us anyway.
According to Riley's nurse, Ginger, she gained 0.10 ounces last night bringing her up to a whopping 5 lbs 12.6 oz. Every bit counts, that's for sure! I plan on making 2 trips today to the hospital. The 1st one after my therapist appointment, then again after I pick up Zoey. Zoey had a rough night last night and the littlest things were making her cry her little heart out. This is yet another reason that I want Riley to come home. I think that when Zoey is more involved in her life, it may seem more real to her. I know only visiting once in a while and having mommy & daddy spending all sorts of time at the hospital has to be hard on her. I'm definitely babying Zoey a little more right now, but in my heart I am sure that is what she needs from me.
Hopefully we will hear soon about Riley's surgery so that we can get a definite date & time on the books as they will still need to transport Riley via ambulance to the hospital. I know it's selfish, but I just want to get this going so that we can start Riley's recovery and road home. In my head, I know that getting Riley home isn't going to magically heal her, but it will help us to get back to a "normal" routine. At least what will become normal to us anyway.
According to Riley's nurse, Ginger, she gained 0.10 ounces last night bringing her up to a whopping 5 lbs 12.6 oz. Every bit counts, that's for sure! I plan on making 2 trips today to the hospital. The 1st one after my therapist appointment, then again after I pick up Zoey. Zoey had a rough night last night and the littlest things were making her cry her little heart out. This is yet another reason that I want Riley to come home. I think that when Zoey is more involved in her life, it may seem more real to her. I know only visiting once in a while and having mommy & daddy spending all sorts of time at the hospital has to be hard on her. I'm definitely babying Zoey a little more right now, but in my heart I am sure that is what she needs from me.
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