Has it only been a year?? (well, almost a year) Next Friday, my son Matthew will turn one year old! He will spend the first part of his 1st birthday driving 1.5 hrs down to Egleston Children's Hospital, one hour getting fed and medicated, 3 hours for dialysis and vital and another 1.5 hours traveling home. Not a fun birthday...but a great one nonetheless! This is the baby that I was told to abort numerous times at 16, 17 and 18weeks gestation. This was the baby that was given a 5% chance of making it to birth, a 12- 15% chance of making to his first birthday and only a 20% chance of enduring hemodialysis at such a small size. And I am 100% thrilled to tell them to their faces...they were wrong!
From mid February 08 to June 3rd 08 I had several "procedures" to keep him going: 4 fetal surgeries for shunt placement, 11 bladder/abdominal taps to relive his urine build up, 13 amnio-infusions for lung development, 2 rounds of steroid shots (those suckers smart!), 5 IV lines and several blood drawls/labs. I don't regret any of it. He's had much more than that in just his first month of life. Most people (the lucky ones) never have a surgery in their lifetime...Matthew has had 14 in one year. OK, 10 in one year...as I am counting the fetal surgeries in there too. And I have never been happier to report that we are moving closer to yet another surgery...transplant!!
I got the OK to move forward with evaluation last Friday, after I made a small stink to his nephrologist. He wanted to wait until Matthew was 9 kilos, he's at 8.5...he'll make 9 kilos in a matter of weeks people. But weeks add up. Ian is starting summer vacation TOMORROW!!! Now granted 18 days of this he'll be in Savannah for drill, but we finally get to spend some family time together making memories. :) We need his time off to do the onslaught of donor testing that is required to give my son a healthy kidney. And based on guesstimates...it seems we will be transplanting in August, his due date month. :)
I hate that he will have another surgery, more scars, a long hospital stay...but I LOVE that he will LIVE because of it. People often ask how could I endure sending my child up to the hospital and waving good bye as the wheel (well, they just carrying him in their arms - fighting over who actually carries him) him into the OR, without a tear in my eye? Because they are helping him...each surgery has helped him...whether the "outcome" has been what we wanted or not...he's been better off with the surgery.
To be a smiling, waving, babbling, drooling baby boy that has fought for his life since 16 weeks gestation...well 12 weeks since that is when they say urine starts to form in babies...I'm so proud he has defied the odds. The numbers don't lie. Matthew may be an "outlier" But the number one has never been as much of an accomplishment as it has for Matthew, my brave fighting Matthew.
Wednesday, May 27, 2009
Tuesday, May 12, 2009
A purpose
I feel so restless. I need to do something. Yes, my house is in shambles and the clean dishes in the dish washer are calling out to me...but that's not what I'm talking about. I need to fight, hug, cry and shout from the rooftops. I want to be an advocate for sick babies, both born and unborn...but I'm stumped on how to do it! I want to be an advocate to all of those, from day one to year one hundred, awaiting organ transplants...but just feel overwhelmed. I want to be a voice for those that can't find their's, but I can't find my way to them. My heart is leading me down a road to forget everything I had originally planned for my life, but my head is simply saying you are crazy and can't do it alone.
AARRRGGHHH! (No, I'm not a pirate...YES, I'm so frustrated). I think I will have a nice long chat with our social worker at Egleston on Friday. I wonder if I could start a support group of some kind...but for which group? Pregnant women with poor prognosis? Babies in danger? People awaiting the gift of life? It's a pickle I tell you, but I'm praying for answers and will post when I find them. Please pray and see how you factor into this...how you can help others in need. It only takes one person to start a chain reaction. I hope you can become a link and not a kink in this chain. :)
AARRRGGHHH! (No, I'm not a pirate...YES, I'm so frustrated). I think I will have a nice long chat with our social worker at Egleston on Friday. I wonder if I could start a support group of some kind...but for which group? Pregnant women with poor prognosis? Babies in danger? People awaiting the gift of life? It's a pickle I tell you, but I'm praying for answers and will post when I find them. Please pray and see how you factor into this...how you can help others in need. It only takes one person to start a chain reaction. I hope you can become a link and not a kink in this chain. :)
Thursday, May 7, 2009
Shut up Karen!
The other night I was in the car of a friend of mine after attending a pampered chef meeting with her (I honestly was just there for the food). We ended up talking about the trials of life...and motherhood. She has lost twins via a miscarriage and also had to deal with NICU nightmares due to a blood disorder with two of her three children. Luckily, they are happy, healthy and thriving now with no complications of their earlier ordeals. Yet, I found myself in tears as she asked me how I deal with the day to day care of Matthew.
I have never lost a child. Two pregnancies...two kiddos. I've never been seriously injured, nor do I deal with any medical issues that tie me down. Yes...I've had issues with animals...like getting my lip bitten off by a dog and getting attacked by a squirrel that attached itself to me like toliet paper to panty hose - that's another post all on its own! My son's "illness" is treatable...unlike many others. Yet, I just got down.
I guess that's allowed, but I don't like admitting it. People (whom I don't even know) say I am strong for dealing with all this with a sense of humor and a thank you to God. But honestly, can you tell me you would do any different if it were your child. If there is a problem: fix it, a boo-boo: kiss it, a non-working kidney: give him your spare!
But I look to the future and hate that my son will be labeled "different". He will have scars covering his abdomen from surgeries past and surgeries yet to be. He will be cathing himself in the bathroom stall instead of using a urinal. He will be infertile since the tubes are not connected or formed as they should be. He will be on drugs that will fight off organ rejection along with his immune system. So a cold will become bronchitis and the flu will become pneumonia. It will never just be "the sniffles". It will be a fear that this virus will cause dehydration. Dehydration will cause a rise in creatinine. A rise in creatinine will mean rejection. Rejection means we have to do this whole mess all over again. It's just mind boggling!
But I'm putting it down. (even though realistically...it will rear it's ugly head again everytime he runs a fever) I WILL not think about such things when he is healthy. What is the point other than to drive myself insane? And when it does happen and we have to do it all again...at least I'll know what to expect. And I know we'll get through it...like we have before. We've gotten through everything so far. Even the things I didn't think I could tolerate to make it through to the next morning...we have. Matthew has...wow...what a fighter he is!
HE has gotten everyone through their trials, and there are trials that are SO much worse than kidney failure! Kidney failure is a walk in the park next to some of my blog friends' trials. And they have come through with grace and dignity. Offering up their praise and suffering to their heavenly Father. I have no right to complain. We are good here. I have no need for tears. We are blessed here. I have no need to worry about the future. We have God here.
I have never lost a child. Two pregnancies...two kiddos. I've never been seriously injured, nor do I deal with any medical issues that tie me down. Yes...I've had issues with animals...like getting my lip bitten off by a dog and getting attacked by a squirrel that attached itself to me like toliet paper to panty hose - that's another post all on its own! My son's "illness" is treatable...unlike many others. Yet, I just got down.
I guess that's allowed, but I don't like admitting it. People (whom I don't even know) say I am strong for dealing with all this with a sense of humor and a thank you to God. But honestly, can you tell me you would do any different if it were your child. If there is a problem: fix it, a boo-boo: kiss it, a non-working kidney: give him your spare!
But I look to the future and hate that my son will be labeled "different". He will have scars covering his abdomen from surgeries past and surgeries yet to be. He will be cathing himself in the bathroom stall instead of using a urinal. He will be infertile since the tubes are not connected or formed as they should be. He will be on drugs that will fight off organ rejection along with his immune system. So a cold will become bronchitis and the flu will become pneumonia. It will never just be "the sniffles". It will be a fear that this virus will cause dehydration. Dehydration will cause a rise in creatinine. A rise in creatinine will mean rejection. Rejection means we have to do this whole mess all over again. It's just mind boggling!
But I'm putting it down. (even though realistically...it will rear it's ugly head again everytime he runs a fever) I WILL not think about such things when he is healthy. What is the point other than to drive myself insane? And when it does happen and we have to do it all again...at least I'll know what to expect. And I know we'll get through it...like we have before. We've gotten through everything so far. Even the things I didn't think I could tolerate to make it through to the next morning...we have. Matthew has...wow...what a fighter he is!
HE has gotten everyone through their trials, and there are trials that are SO much worse than kidney failure! Kidney failure is a walk in the park next to some of my blog friends' trials. And they have come through with grace and dignity. Offering up their praise and suffering to their heavenly Father. I have no right to complain. We are good here. I have no need for tears. We are blessed here. I have no need to worry about the future. We have God here.
Monday, May 4, 2009
Mother's day 09
This will be my 4th Mother's day I have celebrated. My first mother's day, my infant son (William) was only 3 months old, and I left him for the first time ever to go have dinner with my husband. I cried pulling away from our friends' house that were keeping him. I quickly got over it has I enjoyed a dinner at the Oceanic Restaurant located on the beautiful Atlantic Ocean in Wrightsvill Beach, NC. (if you are ever in the Wilmington area...check it out...LOVE IT!)
Actually, each mother's day I have gone out...except last year that is. But the day after, I did go a get a needle in my stomach...does that count as going out? This year, my husband asked me where I wanted to go. I told him nowhere. I just want to be with my boys, all three. Last year at this time, I didn't know if it would be the only time I would be having a mother's day of two precious LIVING boys. And now, I have been blessed to have two beautiful boys in my home to love on daily. Honestly, what more could I want for the day?
But my husband is not easily appeased with my "nothing" request. All males are bound and determined to wrap something up aren't they! So, I just asked for a new book to read. I did have a few other requests as well...but those were free. ;) (One...I will not type out loud - I'm not that kind of lady...well, I am...but I'm trying to be well-mannered). I did request a nap! I also requested a bubble bath (in which to enjoy my new book), and a rub down with lotion once I am out. I did ask for a day with NO medical intervention. I will not draw up medicines, administer medicines, clean dressings, tube feed any solids, set up the nightly pump for tube feedings and I get a free pass on diaper duty too. :) My request is to be a "normal" mom for one day. Because I see my son as a "normal" boy...that giggles and plays with his feet and prefers cotton candy over peas. The only thing that makes him look sick is all the crap I do to him daily! So...not doing it for one day. I'll pick it up again in 24 hours with clinical precision as usual. I just want a day to enjoy my kids...both of my kids. Where only we exist, no hospital stays, no dialysis, no life threatening kidney failure. That would be more of a gift to me than any fancy restaurant, showy jewlery or expensive clothing item that comes in a box.
To all the moms out there, please do not take your kid(s) health for granted. There are SO many mom's out there that are praying for that gift every day. Happy Mother's day to all the mommas out there! God bless you and your little blessings. :)
Actually, each mother's day I have gone out...except last year that is. But the day after, I did go a get a needle in my stomach...does that count as going out? This year, my husband asked me where I wanted to go. I told him nowhere. I just want to be with my boys, all three. Last year at this time, I didn't know if it would be the only time I would be having a mother's day of two precious LIVING boys. And now, I have been blessed to have two beautiful boys in my home to love on daily. Honestly, what more could I want for the day?
But my husband is not easily appeased with my "nothing" request. All males are bound and determined to wrap something up aren't they! So, I just asked for a new book to read. I did have a few other requests as well...but those were free. ;) (One...I will not type out loud - I'm not that kind of lady...well, I am...but I'm trying to be well-mannered). I did request a nap! I also requested a bubble bath (in which to enjoy my new book), and a rub down with lotion once I am out. I did ask for a day with NO medical intervention. I will not draw up medicines, administer medicines, clean dressings, tube feed any solids, set up the nightly pump for tube feedings and I get a free pass on diaper duty too. :) My request is to be a "normal" mom for one day. Because I see my son as a "normal" boy...that giggles and plays with his feet and prefers cotton candy over peas. The only thing that makes him look sick is all the crap I do to him daily! So...not doing it for one day. I'll pick it up again in 24 hours with clinical precision as usual. I just want a day to enjoy my kids...both of my kids. Where only we exist, no hospital stays, no dialysis, no life threatening kidney failure. That would be more of a gift to me than any fancy restaurant, showy jewlery or expensive clothing item that comes in a box.
To all the moms out there, please do not take your kid(s) health for granted. There are SO many mom's out there that are praying for that gift every day. Happy Mother's day to all the mommas out there! God bless you and your little blessings. :)
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