Saturday Jun 26, 2010
It's bittersweet...
More sweet than bitter
Bitter than sweet
It's a bittersweet surrender
Big Head Todd & The Monsters, "Bittersweet"
News comes slowly these days. We finally heard from the folks at Children's Hospital of Philadelphia yesterday. The hospital is affectionately known as "CHOP" - I'm trusting the nickname comes from their acronym rather than a reflection on their surgical skills. They didn't tell us much that we didn't already know: he does really need surgery, and they think it may likely be a replacement valve as well. That's the bitter part.
The sweeter part (or is this bitter too?) is that they are able to do the surgery and that our cardiologist said if it were his choice to make for his child, he would go there. So, we're Philly-bound. We've had enough "God-winks" in the past 2 weeks - lots of people we know with connections to CHOP - that we really trust we're going the right direction. While I've been in higher ed long enough to know that US News rankings don't mean everything, the fact that CHOP is the #2 rated hospital in the country for children's cardiac surgery means Jay will be in really really good hands there.
Here's where it gets bitter again ... we don't know when surgery will be. It's likely going to be late July or August.
But that's sweet as well. Dr. M gave us clearance to go back to living a semi-regular life, meaning that the Foster quarantine can be lifted somewhat. Still no daycare for either of the boys, but we are free to go to the mall, restaurants, church, and to visit with other (healthy!) kids. We are grateful that we have another month or so of time that we can enjoy.
The last sweet thing is all the love and support that we have received from our friends and family. Thank you all so much--you remain one of our happy thoughts.
Posted at 12:38PM Jun 26, 2010 by Jen Foster in General | Comments[4]
Comments:
Along the lines of "CHOP," my mom's cardiac surgeon's name was Dr. Bladergroen...they called him "The Blade."
Thanks for continuing to post and keep everyone updated. There are so many people to support you all!
Posted by Lisa on June 26, 2010 at 02:58 PM EDT #
I like to think of Philly as the "City of Brotherly Love" and know that love will carry us all through this!! Thank goodness Dr. M gave the OK to enjoy the summer outside the confines of the Foster house....one more little thing to be thankful for!! LYTB - AJ
Posted by jeannette johnson on June 26, 2010 at 06:19 PM EDT #
I love Jay.
I love Luke.
I love Jen.
I love Derek.
Posted by TOJ on June 27, 2010 at 12:42 PM EDT #
My OB's name was Al Killam. Seriously bad name for a human.
Posted by Gabby on June 28, 2010 at 03:30 PM EDT #
Saturday, June 26, 2010
Thursday, June 24, 2010
You don't know how it feels...
Thursday Jun 24, 2010
You don't know how it feels...
No you don't know how it feels
To be me
-Tom Petty, You Don't Know How It Feels
When Jay was born and we learned that he was going to need heart surgery, we felt very alone. I knew nothing about having a child with a congenital heart defect (CHD), and it seemed a very scary world we were entering. But pretty quickly, I found a number of other heart moms who blogged about their journeys, and it was very comforting to read about children who had been through multiple surgeries, heart caths, feeding issues and all of the other scariness that goes along with CHD. Reading those blogs made coarctation of the aorta seem pretty mild. In the spectrum of heart problems, it's minor ... and while it's still a major heart defect, it's correctable with surgery. After a successful surgery, coarc kids go on to lead a very normal life, save for the occasional yearly cardiology checkup. That's the path we saw him headed down.
While I found great comfort in seeing other heart families' stories, to be honest, I kinda distanced myself from that world. I saw Jay as a former CHD child - one who'd been "fixed." Everyone believed that - even his cardiologist. So this news has made me rethink the way I view my kid, and I know that I'm going to have a new set of worries - forever - because of this additional heart defect.
Yesterday I saw a blog that absolutely, totally, completely summed up how I'm feeling right now:
Last night as I watched Mary Clare zoom by me in her mini airplane laughing so hard tears were streaming, I couldn’t help but think of what is ahead of us. The mother in me prayed a silent prayer and pleaded to God that this will somehow make it up to her. Maybe if she has the most fun summer, she’ll not hate me for what I know must be done to her. I’ve noticed Mel has also been thinking this way. He has promised to paint her toenails everyday while in the hospital this fall. He told her she could pick out 40 different colors, or however many days we are there, so they can be a different color everyday. He also promised her a trip to Disney World to see all of her beloved Princesses afterward.
How can I do this again? How can she do this again? Yet again. How am I going to be able to hand her over this time, not just for a heart cath, a simple procedure by comparison, but a surgery which rips her tiny body apart? How am I going to be able to watch her on a vent again? Lines, leads, monitors. All over again. Having her torn away from me at birth and sit by and watch all that she went through, then again to have the same thing happen merely 6 months later was horrific. She has to do it all over again, but this time she will ask. Why is this happening? Why can’t we go home? Why do I hurt? Why can’t you put a band-aid on it? These are the questions which haunt my dreams.
I read those words with tears streaming down my face because that's exactly how I feel. She nailed it. And while it's awful, it is so reassuring to know that someone else out there really does know how it feels. To be me.
Posted at 09:26PM Jun 24, 2010 by Jen Foster in General | Comments[2]
Comments:
I don't know how it feels, and it still tears me up. I was crying with you (and Mary Clare's mom) as I read this. Lots of love and hugs to you, sweet friend!
Posted by Amy G. on June 24, 2010 at 10:26 PM EDT #
The phrase "heart moms" gave my heart a peculiar twist - I had thought over the weekend of the many ways we throw around the word "heart" - bless his heart, it broke my heart, the queen of hearts, heartfelt congratulations, heart of gold, heart of stone, heart on your sleeve, you are in my heart. A heart is a valentine, a romantic sign at the end of a love note. A heart is what our precious little ones steal with a snuggle, a sly grin, a twinkle of the eye.
A heart is not meant to be broken. A heart is not meant to be "defective" or "needing surgical repair". A heart is meant to be colored in red crayon and proudly stuck to the refrigerator, duly dated and then faded, covered with other artful renderings of hearts, and flowers, and rainbows, and dogs.
Even as we pray - beg - for God to hear the deepest yearnings of our hearts for Jay's complete healing and, yes, for a cure, all of us who love you so deeply hold your own broken heart in ours. We surround you and Derek with love and promise that even in your darkest moments, when being you is lonely, sad and unknown, you are never, not for even a single beat of your own heavy heart, alone.
Posted by Gabby on June 28, 2010 at 05:58 AM EDT #
You don't know how it feels...
No you don't know how it feels
To be me
-Tom Petty, You Don't Know How It Feels
When Jay was born and we learned that he was going to need heart surgery, we felt very alone. I knew nothing about having a child with a congenital heart defect (CHD), and it seemed a very scary world we were entering. But pretty quickly, I found a number of other heart moms who blogged about their journeys, and it was very comforting to read about children who had been through multiple surgeries, heart caths, feeding issues and all of the other scariness that goes along with CHD. Reading those blogs made coarctation of the aorta seem pretty mild. In the spectrum of heart problems, it's minor ... and while it's still a major heart defect, it's correctable with surgery. After a successful surgery, coarc kids go on to lead a very normal life, save for the occasional yearly cardiology checkup. That's the path we saw him headed down.
While I found great comfort in seeing other heart families' stories, to be honest, I kinda distanced myself from that world. I saw Jay as a former CHD child - one who'd been "fixed." Everyone believed that - even his cardiologist. So this news has made me rethink the way I view my kid, and I know that I'm going to have a new set of worries - forever - because of this additional heart defect.
Yesterday I saw a blog that absolutely, totally, completely summed up how I'm feeling right now:
Last night as I watched Mary Clare zoom by me in her mini airplane laughing so hard tears were streaming, I couldn’t help but think of what is ahead of us. The mother in me prayed a silent prayer and pleaded to God that this will somehow make it up to her. Maybe if she has the most fun summer, she’ll not hate me for what I know must be done to her. I’ve noticed Mel has also been thinking this way. He has promised to paint her toenails everyday while in the hospital this fall. He told her she could pick out 40 different colors, or however many days we are there, so they can be a different color everyday. He also promised her a trip to Disney World to see all of her beloved Princesses afterward.
How can I do this again? How can she do this again? Yet again. How am I going to be able to hand her over this time, not just for a heart cath, a simple procedure by comparison, but a surgery which rips her tiny body apart? How am I going to be able to watch her on a vent again? Lines, leads, monitors. All over again. Having her torn away from me at birth and sit by and watch all that she went through, then again to have the same thing happen merely 6 months later was horrific. She has to do it all over again, but this time she will ask. Why is this happening? Why can’t we go home? Why do I hurt? Why can’t you put a band-aid on it? These are the questions which haunt my dreams.
I read those words with tears streaming down my face because that's exactly how I feel. She nailed it. And while it's awful, it is so reassuring to know that someone else out there really does know how it feels. To be me.
Posted at 09:26PM Jun 24, 2010 by Jen Foster in General | Comments[2]
Comments:
I don't know how it feels, and it still tears me up. I was crying with you (and Mary Clare's mom) as I read this. Lots of love and hugs to you, sweet friend!
Posted by Amy G. on June 24, 2010 at 10:26 PM EDT #
The phrase "heart moms" gave my heart a peculiar twist - I had thought over the weekend of the many ways we throw around the word "heart" - bless his heart, it broke my heart, the queen of hearts, heartfelt congratulations, heart of gold, heart of stone, heart on your sleeve, you are in my heart. A heart is a valentine, a romantic sign at the end of a love note. A heart is what our precious little ones steal with a snuggle, a sly grin, a twinkle of the eye.
A heart is not meant to be broken. A heart is not meant to be "defective" or "needing surgical repair". A heart is meant to be colored in red crayon and proudly stuck to the refrigerator, duly dated and then faded, covered with other artful renderings of hearts, and flowers, and rainbows, and dogs.
Even as we pray - beg - for God to hear the deepest yearnings of our hearts for Jay's complete healing and, yes, for a cure, all of us who love you so deeply hold your own broken heart in ours. We surround you and Derek with love and promise that even in your darkest moments, when being you is lonely, sad and unknown, you are never, not for even a single beat of your own heavy heart, alone.
Posted by Gabby on June 28, 2010 at 05:58 AM EDT #
Tuesday, June 22, 2010
Think happy thoughts...
Tuesday Jun 22, 2010
Think happy thoughts...
...happy thoughts!
that's what you gotta do
Think happy thoughts
happy thoughts!
And a smile will come back to you
When you're alone and feeling sad
and you don't know what to do
when you can't sleep and feel lonely
Here's just what to do
-Muno, Yo Gabba Gabba
Fellow parents of preschoolers seem to fall into one of two categories ... those who love Yo Gabba Gabba, and those who think it's just too weird. My brother refers to it as an acid trip for sober grownups. Derek and I love it, and it's one of Jay's favorites. Actually, it's one of only two shows that he will watch (Fireman Sam is the other, but we find that Norman kid too annoying for words). While we are very restrictive on TV time, we do allow one brief, commercial-free episode (love me some On Demand!) while he does his nebulizer treatment before bed.
In tonight's Yo Gabba Gabba episode, Muno (the tall red cyclops that's in the Kia commercial) can't sleep, and he sings the song above. It just made me smile - it's such amazingly simple advice, but it's also so completely true. Blessings is just a grownup word for happy thoughts, and remembering to focus on those has been the only way I've survived the past week.
I'm sorry it's been so long since my last update, but I will say that I got in a deep funk and just didn't feel much like talking about it. I was pissed off at myself for not realizing there was a heart problem, for not trusting my gut to keep asking questions. I was pissed at my pediatrician. I was pissed at my boobs for not making enough milk for Luke. I was pissed at God for dumping yet another scary medical issue on my family. I was pissed that my birthday fell in the midst of all this junk. I was pretty much pissed at the universe for not being the way I wanted it to be. Not pretty, but that's what I was feeling.
After stewing in my own pissed-off-ness for a few days, I didn't feel better - I just felt cruddy. But one night when I couldn't sleep, I started to list all the good things in my life. It took me a while to get past the first few, but once I got on a roll, I realized that I still have lots of happy thoughts. I know it sounds cheesy, and frankly it is. But I'm gonna dwell on something. Might as well be happy thoughts. It's a blessing that we found this now, instead of when he's in more serious heart failure. It's a blessing that we have these 2 weeks to prepare for surgery and what's ahead. It's a blessing to have a beautiful infant whose smile lights up the room. It's a huge blessing to have a husband who is my strength when I want to bury my head under the covers and not come out until it's over. It's a blessing to have such a wonderful extended family and to have them close by. It's a blessing to have friends that bring Curious George Goes to the Hospital and flowers and pictures of their kids for Jay to look at. All of these are wonderful amazing things in my life, and I am keeping them front and center in my mind.
So, no news in the medical world, really. After getting the report from the surgeon in Charlotte, our cardiologist wanted another opinion from a surgeon in Philadelphia. That seems very far away, but if you're going to be away from Raleigh, there's not much difference in being 3 hours away or 7. He contacted that surgeon last week, but we still haven't heard from them. We don't know if we'd need to go there for further evaluation or whether the previous scans would be enough information for them. We desperately hope that they would have a better chance of saving the heart valve that he has. But the truth is, no one can promise anything.
Jay is doing fantastic. He's had different sitters every day for the past week and a half, and he's had loads of fun with each of them. It doesn't seem to matter whether he knows the person well or not ... he's eager to show off his favorite book (the Sears tool catalog) and his favorite toys (his drill bits) to anyone who will sit still and watch. The fact that he sends me off each day with a hearty "Go to work, Mommy!" is a happy thought too. He's happy, so I can be happy too.
Posted at 09:53PM Jun 22, 2010 by Jen Foster in General | Comments[6]
Comments:
Happy thoughts....happy thoughts....happy thoughts!! Might as well do something we DO have control over....being the control freaks some of us are!! LYTB - AJ
Posted by jeannette johnson on June 23, 2010 at 05:18 PM EDT #
I'm so sorry you are having to go through all of this! I know if it was me, I'd be pissed off too. Keep us posted on what ends up getting scheduled when.
Posted by Bethany Watkins on June 23, 2010 at 07:58 PM EDT #
You are allowed some pity time. But remember that you and your boys are on an awful lot of other people's "Count as a Blessing in my Life" list!
Posted by crystal on June 24, 2010 at 08:19 AM EDT #
Thanks for being real...
we don't have to "act" like everything's great when life takes a dramatic turn. But,"thinking happy thoughts" is always a plus! God will sustain...I'm praying for you. Love, Amanda Lockyer
Posted by Amanda Lockyer on June 24, 2010 at 11:19 AM EDT #
Jen, continue to keep your happy thoughts going even when it looks like there is nothing to be happy about. Remember that everyday is a blessing with renewed mercies. You are in my prayers and may God continue to bless you and keep you. Kiss my boyfriend for me and one day, I will get to meet my new potential boyfriend, Luke :)
Posted by Theresa on June 24, 2010 at 03:17 PM EDT #
Jen, thanks for sharing your thoughts! Having happy thoughts and counting blessings have always helped me throughout the years when I was mad at the world and down in the dumps for whatever I was going through. We just have to dwell on all the good things because life is not fair! We are all praying for you!
Take care.
Posted by Pat Miller Evans on June 24, 2010 at 07:51 PM EDT #
Think happy thoughts...
...happy thoughts!
that's what you gotta do
Think happy thoughts
happy thoughts!
And a smile will come back to you
When you're alone and feeling sad
and you don't know what to do
when you can't sleep and feel lonely
Here's just what to do
-Muno, Yo Gabba Gabba
Fellow parents of preschoolers seem to fall into one of two categories ... those who love Yo Gabba Gabba, and those who think it's just too weird. My brother refers to it as an acid trip for sober grownups. Derek and I love it, and it's one of Jay's favorites. Actually, it's one of only two shows that he will watch (Fireman Sam is the other, but we find that Norman kid too annoying for words). While we are very restrictive on TV time, we do allow one brief, commercial-free episode (love me some On Demand!) while he does his nebulizer treatment before bed.
In tonight's Yo Gabba Gabba episode, Muno (the tall red cyclops that's in the Kia commercial) can't sleep, and he sings the song above. It just made me smile - it's such amazingly simple advice, but it's also so completely true. Blessings is just a grownup word for happy thoughts, and remembering to focus on those has been the only way I've survived the past week.
I'm sorry it's been so long since my last update, but I will say that I got in a deep funk and just didn't feel much like talking about it. I was pissed off at myself for not realizing there was a heart problem, for not trusting my gut to keep asking questions. I was pissed at my pediatrician. I was pissed at my boobs for not making enough milk for Luke. I was pissed at God for dumping yet another scary medical issue on my family. I was pissed that my birthday fell in the midst of all this junk. I was pretty much pissed at the universe for not being the way I wanted it to be. Not pretty, but that's what I was feeling.
After stewing in my own pissed-off-ness for a few days, I didn't feel better - I just felt cruddy. But one night when I couldn't sleep, I started to list all the good things in my life. It took me a while to get past the first few, but once I got on a roll, I realized that I still have lots of happy thoughts. I know it sounds cheesy, and frankly it is. But I'm gonna dwell on something. Might as well be happy thoughts. It's a blessing that we found this now, instead of when he's in more serious heart failure. It's a blessing that we have these 2 weeks to prepare for surgery and what's ahead. It's a blessing to have a beautiful infant whose smile lights up the room. It's a huge blessing to have a husband who is my strength when I want to bury my head under the covers and not come out until it's over. It's a blessing to have such a wonderful extended family and to have them close by. It's a blessing to have friends that bring Curious George Goes to the Hospital and flowers and pictures of their kids for Jay to look at. All of these are wonderful amazing things in my life, and I am keeping them front and center in my mind.
So, no news in the medical world, really. After getting the report from the surgeon in Charlotte, our cardiologist wanted another opinion from a surgeon in Philadelphia. That seems very far away, but if you're going to be away from Raleigh, there's not much difference in being 3 hours away or 7. He contacted that surgeon last week, but we still haven't heard from them. We don't know if we'd need to go there for further evaluation or whether the previous scans would be enough information for them. We desperately hope that they would have a better chance of saving the heart valve that he has. But the truth is, no one can promise anything.
Jay is doing fantastic. He's had different sitters every day for the past week and a half, and he's had loads of fun with each of them. It doesn't seem to matter whether he knows the person well or not ... he's eager to show off his favorite book (the Sears tool catalog) and his favorite toys (his drill bits) to anyone who will sit still and watch. The fact that he sends me off each day with a hearty "Go to work, Mommy!" is a happy thought too. He's happy, so I can be happy too.
Posted at 09:53PM Jun 22, 2010 by Jen Foster in General | Comments[6]
Comments:
Happy thoughts....happy thoughts....happy thoughts!! Might as well do something we DO have control over....being the control freaks some of us are!! LYTB - AJ
Posted by jeannette johnson on June 23, 2010 at 05:18 PM EDT #
I'm so sorry you are having to go through all of this! I know if it was me, I'd be pissed off too. Keep us posted on what ends up getting scheduled when.
Posted by Bethany Watkins on June 23, 2010 at 07:58 PM EDT #
You are allowed some pity time. But remember that you and your boys are on an awful lot of other people's "Count as a Blessing in my Life" list!
Posted by crystal on June 24, 2010 at 08:19 AM EDT #
Thanks for being real...
we don't have to "act" like everything's great when life takes a dramatic turn. But,"thinking happy thoughts" is always a plus! God will sustain...I'm praying for you. Love, Amanda Lockyer
Posted by Amanda Lockyer on June 24, 2010 at 11:19 AM EDT #
Jen, continue to keep your happy thoughts going even when it looks like there is nothing to be happy about. Remember that everyday is a blessing with renewed mercies. You are in my prayers and may God continue to bless you and keep you. Kiss my boyfriend for me and one day, I will get to meet my new potential boyfriend, Luke :)
Posted by Theresa on June 24, 2010 at 03:17 PM EDT #
Jen, thanks for sharing your thoughts! Having happy thoughts and counting blessings have always helped me throughout the years when I was mad at the world and down in the dumps for whatever I was going through. We just have to dwell on all the good things because life is not fair! We are all praying for you!
Take care.
Posted by Pat Miller Evans on June 24, 2010 at 07:51 PM EDT #
Thursday, June 10, 2010
Well I won't back down...
Thursday Jun 10, 2010
Well I won't back down...
No I won't back down
You can stand me up at the gates of hell
But I won't back down
-Tom Petty, I Won't Back Down
When we left the house this morning, I asked Derek how he was feeling about things. His response?
"Bring it on."
It's hard to describe in words the range of emotions that we've felt over the past 2 days. Shock. Fear. Guilt - how did we miss this?. Bigger fear. Gratitude for family and friends. Really big, punch-in-the-gut fear. But this morning we were both of the "Bring it On" mindset. We wanted some answers and wanted to have a plan for what is to come. And I think that after a VERY long day in the medical world, we're feeling a little more confident about the direction we're heading. That direction is to wait about 2 weeks for him to get beyond this most recent pneumonia episode and then do surgery at the end of June. You always want to go into surgery as healthy as you possibly can be, and this gives him the best opportunity for the fewest complications.
There were 2 things that really made me feel better about this approach. First, the surgeon said "This is urgent, but it's not an emergency." When Dr. M talked about sending us straight from the cardiology office to the hospital yesterday, I really freaked. But it's becoming more clear that this problem has been evolving over the past several months and didn't just appear this week. We just discovered it this week, and there's a big difference. Then, later in the day, the cardiologist said "He's the same kid that he was yesterday. Don't forget that." (I of course had to remind him that while HE may be the same, WE are not. We were pretty cool, laid-back parents yesterday. Today, we're tightly-wound bundles of nerves who are spoiling their son rotten in some misguided hope of shielding him from hurting.)
Our visit to Levine Children's Hospital was better than we expected. To start with, Jay was fantastic. He's been a little toddler-esque lately, having nuclear meltdowns over the fact that we're out of Cheddar Goldfish for example. So we were expecting that lack of food + no opportunity for nap + strange place + being poked & prodded = bad news for all involved. But he did great. He's far more brave than I am.
As for what we learned, the primary goal is to save the valve that Jay has and repair it, as opposed to putting in an artificial valve. It's always better to use what God gave you than to try and recreate the intricate machine that is the heart. But after today's echo, it's looking less likely that they can save it. They gave us 50/50 odds that they can repair the valve vs. put in a mechanical valve. I don't like those odds, but I can whine all I want and it won't change a thing. They will start surgery as a repair and try to make it work. But if they can't, a mechanical valve will last somewhere in the range of 300 years. Cool statistic ... except that he'll outgrow it when it still has 290 years left. Wonder what it'll be worth on Ebay?
That was another big piece of news - this surgery, whether repair or replace, will only be a temporary fix for 5-10 years. He's got a lot of growing to do, and carbon fiber parts just don't grow. While I was saddened and scared to hear that, in my "Bring It On" mentality, I'm glad to know what to expect.
So, that's our day in a nutshell. The most immediate hurdle is that our family needs to go into pseudo-isolation to keep Jay from being exposed to any germs. We were told to use "good judgment" in deciding where he can go ... whatever that means! No daycare, no church, no birthday parties and no ball pit at McDonald's. And, to make it even more exciting, he suggested we keep Luke out of daycare as well to keep him from bringing germs into our house.
We're not sure exactly how we're going to handle that and still remain gainfully employed. Gotta keep that health insurance, you know. We will certainly have to rely on others to get us through these next couple of weeks. We have been just overwhelmed with offers of help, with love and prayers. I don't even know how to thank you all for praying for us.
Posted at 11:00PM Jun 10, 2010 by Jen Foster in General | Comments[6]
Comments:
My 4 year old granddaughter had surgery for Chiari Malformation March 31. They had to open her skull, remove bone, cut & patch the dura around the brain, singe the cerebellum and drill a hole in her C1 vertebra. There was no other choice but surgery.
The fear is not just the outcome of surgery, but knowing what they will go through. They look at everything with innocence. They are happy to see the doctors and nurses and it’s a great adventure, but you know how they will feel when they wake up from surgery and there is nothing you can do about it. It’s heartbreaking!
But kids are resilient; Makayla wouldn’t even look at the surgeon when we left the hospital. For the 6 week checkup, she wanted to take him a thank you card and they just returned from her first trip to Disney World.
So have faith, Jay and all his family will be surrounded by love and prayers. Things will get better, he will feel better and he will be the same little boy you love.
Posted by Debbie Gilland on June 11, 2010 at 03:28 PM EDT #
Whaaaat? A fast food ball pit is nothing if not cleanly.
Glad you made it through the trip okay. :-) You must feel better just having a plan. I've been thinking about you guys!
Posted by Ginger on June 11, 2010 at 07:00 PM EDT #
Derek and Jen,
We just received word of this latest news and we are praying so hard for you guys! We know that Jay is a fighter and God is able--but we know that is scary and discouraging, too. We will pray every day for God to make the repair possible and we know--50/50 is big odd to our Big God! Love, Todd and Amanda Lockyer
Posted by Todd and Amanda Lockyer on June 15, 2010 at 03:37 PM EDT #
Dear Jen and Derek,
We were so sorry to hear about Jay. Wanted you to know that you are in our prayers daily and, as you already know, prayer is very powerful. Just keep the faith and he will be just fine. You are all so strong and God will give you strength to see you through. Take care and hang in there!
Posted by Pat Miller Evans on June 17, 2010 at 01:46 PM EDT #
Praying hard for everyone involved, Jay, his parents, his grandparents and Luke's other caregivers, Jay's doctors and nurses.
Have you set the surgery date yet? I can put it on my prayer calendar. You are all very brave, and you know if there is anything that we can do to make things easier, we'd be happy to.
Posted by Erin on June 21, 2010 at 03:16 PM EDT #
We are still praying for you all. When Jay was just a few hours old, the praying for Jay every time we picked up Grayson began, and the past days have been no different and will continue... we are going through a don't put me down stage again, guess that means don't quite praying and we won't. We love you all, and being a teacher with two kids in day care, means a hug is out of the question, but call me if you need me.
Posted by Melissa on June 21, 2010 at 03:30 PM EDT #
Well I won't back down...
No I won't back down
You can stand me up at the gates of hell
But I won't back down
-Tom Petty, I Won't Back Down
When we left the house this morning, I asked Derek how he was feeling about things. His response?
"Bring it on."
It's hard to describe in words the range of emotions that we've felt over the past 2 days. Shock. Fear. Guilt - how did we miss this?. Bigger fear. Gratitude for family and friends. Really big, punch-in-the-gut fear. But this morning we were both of the "Bring it On" mindset. We wanted some answers and wanted to have a plan for what is to come. And I think that after a VERY long day in the medical world, we're feeling a little more confident about the direction we're heading. That direction is to wait about 2 weeks for him to get beyond this most recent pneumonia episode and then do surgery at the end of June. You always want to go into surgery as healthy as you possibly can be, and this gives him the best opportunity for the fewest complications.
There were 2 things that really made me feel better about this approach. First, the surgeon said "This is urgent, but it's not an emergency." When Dr. M talked about sending us straight from the cardiology office to the hospital yesterday, I really freaked. But it's becoming more clear that this problem has been evolving over the past several months and didn't just appear this week. We just discovered it this week, and there's a big difference. Then, later in the day, the cardiologist said "He's the same kid that he was yesterday. Don't forget that." (I of course had to remind him that while HE may be the same, WE are not. We were pretty cool, laid-back parents yesterday. Today, we're tightly-wound bundles of nerves who are spoiling their son rotten in some misguided hope of shielding him from hurting.)
Our visit to Levine Children's Hospital was better than we expected. To start with, Jay was fantastic. He's been a little toddler-esque lately, having nuclear meltdowns over the fact that we're out of Cheddar Goldfish for example. So we were expecting that lack of food + no opportunity for nap + strange place + being poked & prodded = bad news for all involved. But he did great. He's far more brave than I am.
As for what we learned, the primary goal is to save the valve that Jay has and repair it, as opposed to putting in an artificial valve. It's always better to use what God gave you than to try and recreate the intricate machine that is the heart. But after today's echo, it's looking less likely that they can save it. They gave us 50/50 odds that they can repair the valve vs. put in a mechanical valve. I don't like those odds, but I can whine all I want and it won't change a thing. They will start surgery as a repair and try to make it work. But if they can't, a mechanical valve will last somewhere in the range of 300 years. Cool statistic ... except that he'll outgrow it when it still has 290 years left. Wonder what it'll be worth on Ebay?
That was another big piece of news - this surgery, whether repair or replace, will only be a temporary fix for 5-10 years. He's got a lot of growing to do, and carbon fiber parts just don't grow. While I was saddened and scared to hear that, in my "Bring It On" mentality, I'm glad to know what to expect.
So, that's our day in a nutshell. The most immediate hurdle is that our family needs to go into pseudo-isolation to keep Jay from being exposed to any germs. We were told to use "good judgment" in deciding where he can go ... whatever that means! No daycare, no church, no birthday parties and no ball pit at McDonald's. And, to make it even more exciting, he suggested we keep Luke out of daycare as well to keep him from bringing germs into our house.
We're not sure exactly how we're going to handle that and still remain gainfully employed. Gotta keep that health insurance, you know. We will certainly have to rely on others to get us through these next couple of weeks. We have been just overwhelmed with offers of help, with love and prayers. I don't even know how to thank you all for praying for us.
Posted at 11:00PM Jun 10, 2010 by Jen Foster in General | Comments[6]
Comments:
My 4 year old granddaughter had surgery for Chiari Malformation March 31. They had to open her skull, remove bone, cut & patch the dura around the brain, singe the cerebellum and drill a hole in her C1 vertebra. There was no other choice but surgery.
The fear is not just the outcome of surgery, but knowing what they will go through. They look at everything with innocence. They are happy to see the doctors and nurses and it’s a great adventure, but you know how they will feel when they wake up from surgery and there is nothing you can do about it. It’s heartbreaking!
But kids are resilient; Makayla wouldn’t even look at the surgeon when we left the hospital. For the 6 week checkup, she wanted to take him a thank you card and they just returned from her first trip to Disney World.
So have faith, Jay and all his family will be surrounded by love and prayers. Things will get better, he will feel better and he will be the same little boy you love.
Posted by Debbie Gilland on June 11, 2010 at 03:28 PM EDT #
Whaaaat? A fast food ball pit is nothing if not cleanly.
Glad you made it through the trip okay. :-) You must feel better just having a plan. I've been thinking about you guys!
Posted by Ginger on June 11, 2010 at 07:00 PM EDT #
Derek and Jen,
We just received word of this latest news and we are praying so hard for you guys! We know that Jay is a fighter and God is able--but we know that is scary and discouraging, too. We will pray every day for God to make the repair possible and we know--50/50 is big odd to our Big God! Love, Todd and Amanda Lockyer
Posted by Todd and Amanda Lockyer on June 15, 2010 at 03:37 PM EDT #
Dear Jen and Derek,
We were so sorry to hear about Jay. Wanted you to know that you are in our prayers daily and, as you already know, prayer is very powerful. Just keep the faith and he will be just fine. You are all so strong and God will give you strength to see you through. Take care and hang in there!
Posted by Pat Miller Evans on June 17, 2010 at 01:46 PM EDT #
Praying hard for everyone involved, Jay, his parents, his grandparents and Luke's other caregivers, Jay's doctors and nurses.
Have you set the surgery date yet? I can put it on my prayer calendar. You are all very brave, and you know if there is anything that we can do to make things easier, we'd be happy to.
Posted by Erin on June 21, 2010 at 03:16 PM EDT #
We are still praying for you all. When Jay was just a few hours old, the praying for Jay every time we picked up Grayson began, and the past days have been no different and will continue... we are going through a don't put me down stage again, guess that means don't quite praying and we won't. We love you all, and being a teacher with two kids in day care, means a hug is out of the question, but call me if you need me.
Posted by Melissa on June 21, 2010 at 03:30 PM EDT #
Wednesday, June 9, 2010
Don't tell my heart...
Wednesday Jun 09, 2010
Don't tell my heart...
...my achy breaky heart
I just don't think it'd understand
-Achy Breaky Heart, Billy Ray Cyrus
Many of my readers came across my blog in the first place because we used it as a way to communicate with family and friends when I was pregnant with Jay, and more importantly, when he was in the PICU at Duke facing heart surgery as a newborn. I've used it since to share details of our lives as we stumbled through parenthood, and to show off a pic here and there. It's now coming full circle and I need to use this space to let you know about a really difficult day we had and some really scary days that are to come.
Today, we went for Jay's regular check-up with his cardiologist. These are usually smooth as silk ... listen to his ticker, do an echocardiogram, tell us his aorta is still flowing beautifully and send us on our way. Today's visit was very different.
We've been fighting recurring pneumonia for several months. Jay will be doing great, start to get a little cold, then WHAM he's got pneumonia. But after a course of antibiotics, he's better and we move on our merry way. He had another very sudden episode on Sunday, and that makes the 3rd pneumonia in as many months. (So that's what having a little brother does to you, huh?) We'd talked with the pediatrician about it, and he was quite confident that it was not a heart issue, but he suggested we talk it over with his cardiologist just for confirmation. Dr. Cardio's immediate response was that it was NOT a heart problem, and said that he would try to get us an earlier appointment with an immunologist. There are some immune issues that are connected to heart problems, so everyone was looking to that as the problem. Then he went about his usual routine, listening to his heart.
Unfortunately, what he heard wasn't normal, and what he saw on the echocardiogram was really really really not normal. In fact, it was really bad. His mitral valve is significantly narrowed, which means blood doesn't move through the heart correctly. And, more significantly, the valve is leaking which means blood is moving the wrong direction and causing fluid to back up into his lungs. The fact that he constantly has fluid in his lungs is the reason for the frequent lung infections. No one seems to know why this has changed so significantly in the past 6 months. It was not there when he was born, and there is no good explanation for what caused this major valve problem.
The solution to the two mitral valve problems is open heart surgery. We hope that the surgeon will be able to use the valve that he's got and repair it to normal function. If he isn't able to do that, an artificial (mechanical) valve would be required. Repair of his existing valve has a much better long-term prognosis in terms of quality of life.
Because this is a much more unusual problem than the coarctation that was corrected as a baby, our cardiologist is recommending that we see a heart surgeon in Charlotte at Levine Children's Hospital. We are leaving tomorrow morning to meet with him and have additional testing done, including a 3-D echocardiogram which will be done while he's sedated. We hope that will give us a much better understanding of what's going on and what the surgical repair will involve. Surgery may be scheduled as early as next Monday or possibly a few weeks later if he's stable. We will update the blog when we know more.
It's important to note that Jay *feels* fine. He's happy, not in pain, and not showing any signs that this is as serious as it is. He thinks he's going on a fun trip with Mom & Dad tomorrow and while he seems to understand that we're stressed out, he's his typical happy toddler self. Derek and I are (understandably!) freaking out and trying to keep a calm exterior. Sometimes we succeed better than others. Luke is staying in Raleigh for tomorrow's trip to get some extra special attention from LaLa and Popper. If we end up staying longer in Charlotte, they will bring him to be with us.
We covet your prayers - for Jay's health, for guidance as we make decisions about treatment, for the doctors to understand the complex problems and how to heal our baby. Thanks for being the kind of supportive friends and family we can rely on when the wheels fall off the wagon.
Posted at 10:32PM Jun 09, 2010 by Jen Foster in General | Comments[20]
Comments:
Dennis shared with me yesterday that Jay had pneumonia again and all I could say was "that's not good". Correlation to the heart was unexpected. Although it was not as obvious to even the most educated (Dr's) at first, it was not a surprise to our God. Jay is in the Lord's hands and we are praying for you all and Jay, who is constantly a blessing to all who meet him.
Posted by Great Aunt Ali on June 09, 2010 at 10:54 PM EDT #
Oh my gosh! I hate this for you guys and for Jay. You will all definitely be in my prayers.
Do you remember my suitemate Jennifer? Her husband had a really bad heart problem when he was little. He had to go through open heart surgery when he was probably just about Jay's age. She has told me how scary it was for his family while they were going through it. The good news is he's great - and that was probably over 30 years ago! Think of all the medical advances since then. I will be thinking about you guys!!!
Posted by Ginger on June 09, 2010 at 11:03 PM EDT #
We will definitely be keeping you in our prayers. I know that Dr. M is doing what is best by referring you to the new doctors. If he says they're great, I'm sure they're the best! Travel safe! Lots of hugs!
Posted by Cynthia on June 09, 2010 at 11:21 PM EDT #
Dear, Dear, Dear Jen, Derek, Jay and Luke,
You all will be in my prayers and I know God will be holding you all in the palms of His hands. I wish you weren't having to go through this and if there is anything at all I can do, please let me know!
Love and God bless you all,
Susie
Posted by Susie on June 10, 2010 at 02:25 AM EDT #
Jen and Derek,
You've been in my thoughts constantly since I read this post last night. I'm sending you love and prayers for a swift and permanent recovery. I shared your beach pictures with my mom the other day and her first comment was how happy Jay looked. Keep that in mind over the difficult days and weeks ahead. He's so lucky to have you-keep up your strength.
With love,
Katrine
Posted by Katrine on June 10, 2010 at 07:26 AM EDT #
We will continue to pray. Know that there are many there for you - to support and uplift even when you can't physically see us in Charlotte.
Posted by Lisa on June 10, 2010 at 07:31 AM EDT #
If you guys need a place to stay, we're not far from Charolotte. Or if you need anything, you can give me a call and I can bring it to you (336.413.0326)
I hope all goes well with the little guy. He really stole my heart the day I saw him a few weeks ago!
Posted by Erin on June 10, 2010 at 07:40 AM EDT #
We're thinking of you guys!
Posted by Stacy on June 10, 2010 at 09:15 AM EDT #
PRAYING, PRAYING, PRAYING ... for peace for you & Derek, wisdom for the new surgeon, and a healthy little boy at the end of all this!
Posted by Joye on June 10, 2010 at 10:07 AM EDT #
Jay's best friend Oren sends hugs and prayers your way!
Posted by Oie Osterkamp on June 10, 2010 at 10:15 AM EDT #
Jen and Derek,
I really enjoy hanging out with Jay in extended session. He is an incredible child. Of course, you already know this. We will be praying for Jay and your family as he goes through another stressful surgery.
Posted by Sean Toomey on June 10, 2010 at 10:36 AM EDT #
Oh Jen, I am so sorry to hear of this news. I got D's email this morning and just finished reading your blog details. I'm glad you all have a plan that is coming together. I will be praying for every doctor and nurse that you meet, and especially for you guys. You all have been and will be on my mind often. Let us know if we can help out in some other way as well. Love and hugs to you all.
Rebecca
Posted by Rebecca Sasser on June 10, 2010 at 12:05 PM EDT #
Jen and Derek,
I really enjoy hanging out with Jay in extended session. He is an incredible child. Of course, you already know this. We will be praying for Jay and your family as he goes through another stressful surgery.
Posted by Sean Toomey on June 10, 2010 at 12:14 PM EDT #
You can send Jay a message by going to: https://www.levinechildrenshospital.org/secure_custom_body.cfm?customPage=actEmailAChild
May God watch over your family and bring you through this with an even stronger faith!
Posted by Bethany Watkins on June 10, 2010 at 12:35 PM EDT #
I will keep Jay and all of you in my prayers.
Posted by Debbie Gilland on June 10, 2010 at 01:09 PM EDT #
We'll just have to put the wheels back on and circle the wagons! We'll surround you and your family with love and prayers.
Love you, Annie
Posted by Annie on June 10, 2010 at 02:20 PM EDT #
Jen, Derek, Jay & Luke:
I will keep you all in my prayers. Take Care, Sylvia.
Posted by Sylvia Mc on June 10, 2010 at 03:06 PM EDT #
Jen and Derek,
I really enjoy hanging out with Jay in extended session. He is an incredible child. Of course, you already know this. We will be praying for Jay and your family as he goes through another stressful surgery.
Posted by Sean Toomey on June 10, 2010 at 04:56 PM EDT #
Jen and Derek,
Just wanted you to know that we are praying for you, Jay and your entire family during this time. Hope your visits in Charlotte go okay. Please keep us all updated so we can continue to pray!
Posted by Emily and Brian Moore on June 10, 2010 at 10:38 PM EDT #
Don't tell my heart...
...my achy breaky heart
I just don't think it'd understand
-Achy Breaky Heart, Billy Ray Cyrus
Many of my readers came across my blog in the first place because we used it as a way to communicate with family and friends when I was pregnant with Jay, and more importantly, when he was in the PICU at Duke facing heart surgery as a newborn. I've used it since to share details of our lives as we stumbled through parenthood, and to show off a pic here and there. It's now coming full circle and I need to use this space to let you know about a really difficult day we had and some really scary days that are to come.
Today, we went for Jay's regular check-up with his cardiologist. These are usually smooth as silk ... listen to his ticker, do an echocardiogram, tell us his aorta is still flowing beautifully and send us on our way. Today's visit was very different.
We've been fighting recurring pneumonia for several months. Jay will be doing great, start to get a little cold, then WHAM he's got pneumonia. But after a course of antibiotics, he's better and we move on our merry way. He had another very sudden episode on Sunday, and that makes the 3rd pneumonia in as many months. (So that's what having a little brother does to you, huh?) We'd talked with the pediatrician about it, and he was quite confident that it was not a heart issue, but he suggested we talk it over with his cardiologist just for confirmation. Dr. Cardio's immediate response was that it was NOT a heart problem, and said that he would try to get us an earlier appointment with an immunologist. There are some immune issues that are connected to heart problems, so everyone was looking to that as the problem. Then he went about his usual routine, listening to his heart.
Unfortunately, what he heard wasn't normal, and what he saw on the echocardiogram was really really really not normal. In fact, it was really bad. His mitral valve is significantly narrowed, which means blood doesn't move through the heart correctly. And, more significantly, the valve is leaking which means blood is moving the wrong direction and causing fluid to back up into his lungs. The fact that he constantly has fluid in his lungs is the reason for the frequent lung infections. No one seems to know why this has changed so significantly in the past 6 months. It was not there when he was born, and there is no good explanation for what caused this major valve problem.
The solution to the two mitral valve problems is open heart surgery. We hope that the surgeon will be able to use the valve that he's got and repair it to normal function. If he isn't able to do that, an artificial (mechanical) valve would be required. Repair of his existing valve has a much better long-term prognosis in terms of quality of life.
Because this is a much more unusual problem than the coarctation that was corrected as a baby, our cardiologist is recommending that we see a heart surgeon in Charlotte at Levine Children's Hospital. We are leaving tomorrow morning to meet with him and have additional testing done, including a 3-D echocardiogram which will be done while he's sedated. We hope that will give us a much better understanding of what's going on and what the surgical repair will involve. Surgery may be scheduled as early as next Monday or possibly a few weeks later if he's stable. We will update the blog when we know more.
It's important to note that Jay *feels* fine. He's happy, not in pain, and not showing any signs that this is as serious as it is. He thinks he's going on a fun trip with Mom & Dad tomorrow and while he seems to understand that we're stressed out, he's his typical happy toddler self. Derek and I are (understandably!) freaking out and trying to keep a calm exterior. Sometimes we succeed better than others. Luke is staying in Raleigh for tomorrow's trip to get some extra special attention from LaLa and Popper. If we end up staying longer in Charlotte, they will bring him to be with us.
We covet your prayers - for Jay's health, for guidance as we make decisions about treatment, for the doctors to understand the complex problems and how to heal our baby. Thanks for being the kind of supportive friends and family we can rely on when the wheels fall off the wagon.
Posted at 10:32PM Jun 09, 2010 by Jen Foster in General | Comments[20]
Comments:
Dennis shared with me yesterday that Jay had pneumonia again and all I could say was "that's not good". Correlation to the heart was unexpected. Although it was not as obvious to even the most educated (Dr's) at first, it was not a surprise to our God. Jay is in the Lord's hands and we are praying for you all and Jay, who is constantly a blessing to all who meet him.
Posted by Great Aunt Ali on June 09, 2010 at 10:54 PM EDT #
Oh my gosh! I hate this for you guys and for Jay. You will all definitely be in my prayers.
Do you remember my suitemate Jennifer? Her husband had a really bad heart problem when he was little. He had to go through open heart surgery when he was probably just about Jay's age. She has told me how scary it was for his family while they were going through it. The good news is he's great - and that was probably over 30 years ago! Think of all the medical advances since then. I will be thinking about you guys!!!
Posted by Ginger on June 09, 2010 at 11:03 PM EDT #
We will definitely be keeping you in our prayers. I know that Dr. M is doing what is best by referring you to the new doctors. If he says they're great, I'm sure they're the best! Travel safe! Lots of hugs!
Posted by Cynthia on June 09, 2010 at 11:21 PM EDT #
Dear, Dear, Dear Jen, Derek, Jay and Luke,
You all will be in my prayers and I know God will be holding you all in the palms of His hands. I wish you weren't having to go through this and if there is anything at all I can do, please let me know!
Love and God bless you all,
Susie
Posted by Susie on June 10, 2010 at 02:25 AM EDT #
Jen and Derek,
You've been in my thoughts constantly since I read this post last night. I'm sending you love and prayers for a swift and permanent recovery. I shared your beach pictures with my mom the other day and her first comment was how happy Jay looked. Keep that in mind over the difficult days and weeks ahead. He's so lucky to have you-keep up your strength.
With love,
Katrine
Posted by Katrine on June 10, 2010 at 07:26 AM EDT #
We will continue to pray. Know that there are many there for you - to support and uplift even when you can't physically see us in Charlotte.
Posted by Lisa on June 10, 2010 at 07:31 AM EDT #
If you guys need a place to stay, we're not far from Charolotte. Or if you need anything, you can give me a call and I can bring it to you (336.413.0326)
I hope all goes well with the little guy. He really stole my heart the day I saw him a few weeks ago!
Posted by Erin on June 10, 2010 at 07:40 AM EDT #
We're thinking of you guys!
Posted by Stacy on June 10, 2010 at 09:15 AM EDT #
PRAYING, PRAYING, PRAYING ... for peace for you & Derek, wisdom for the new surgeon, and a healthy little boy at the end of all this!
Posted by Joye on June 10, 2010 at 10:07 AM EDT #
Jay's best friend Oren sends hugs and prayers your way!
Posted by Oie Osterkamp on June 10, 2010 at 10:15 AM EDT #
Jen and Derek,
I really enjoy hanging out with Jay in extended session. He is an incredible child. Of course, you already know this. We will be praying for Jay and your family as he goes through another stressful surgery.
Posted by Sean Toomey on June 10, 2010 at 10:36 AM EDT #
Oh Jen, I am so sorry to hear of this news. I got D's email this morning and just finished reading your blog details. I'm glad you all have a plan that is coming together. I will be praying for every doctor and nurse that you meet, and especially for you guys. You all have been and will be on my mind often. Let us know if we can help out in some other way as well. Love and hugs to you all.
Rebecca
Posted by Rebecca Sasser on June 10, 2010 at 12:05 PM EDT #
Jen and Derek,
I really enjoy hanging out with Jay in extended session. He is an incredible child. Of course, you already know this. We will be praying for Jay and your family as he goes through another stressful surgery.
Posted by Sean Toomey on June 10, 2010 at 12:14 PM EDT #
You can send Jay a message by going to: https://www.levinechildrenshospital.org/secure_custom_body.cfm?customPage=actEmailAChild
May God watch over your family and bring you through this with an even stronger faith!
Posted by Bethany Watkins on June 10, 2010 at 12:35 PM EDT #
I will keep Jay and all of you in my prayers.
Posted by Debbie Gilland on June 10, 2010 at 01:09 PM EDT #
We'll just have to put the wheels back on and circle the wagons! We'll surround you and your family with love and prayers.
Love you, Annie
Posted by Annie on June 10, 2010 at 02:20 PM EDT #
Jen, Derek, Jay & Luke:
I will keep you all in my prayers. Take Care, Sylvia.
Posted by Sylvia Mc on June 10, 2010 at 03:06 PM EDT #
Jen and Derek,
I really enjoy hanging out with Jay in extended session. He is an incredible child. Of course, you already know this. We will be praying for Jay and your family as he goes through another stressful surgery.
Posted by Sean Toomey on June 10, 2010 at 04:56 PM EDT #
Jen and Derek,
Just wanted you to know that we are praying for you, Jay and your entire family during this time. Hope your visits in Charlotte go okay. Please keep us all updated so we can continue to pray!
Posted by Emily and Brian Moore on June 10, 2010 at 10:38 PM EDT #
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