The gifts

Tomorrow is my baby boys first birthday (even though...techinically he's still 10 months old). I have bought all the necessary birthday shindigs...balloons, centerpiece, cake, plates, napkins, presents, cupcake hat with ONE birthday candle - OK, not all of the things were necessary. :) But really, none of that matters. It's just to put pictures in the baby book so we can look back later in life and remember the day. None of what I have bought him compares to the gifts he has given me in return.
This one small little guy is responsible for making me get back on track with God. I had stopped going to church, we had stopped having family prayer, I had started taking things for granted...no more. He has made me question my "religion" and find a new faith through The Word. I now find myself trusting in God more than relying on monitors and lab results. My child has already defied the odds anyway...what do the statistics mean to us?
My son has given me many small things that add up to make me a better person. I'm more well rounded you could say. Before if I couldn't put myself in your shoes...I just figured you'd be able to make it out ok...everyone does right? But through Matthew, my compassion and empathy have strengthened. I no longer turn a blind eye to children in distress. I freely admit to not being much of a "baby person" as I grew up. I would much rather hold a puppy and a child. Never even thought I had the "mother gene" in me until I gave birth to my first son, William. But when Matthew came, I wanted to mother all children...sick and healthy. I now have a special place in my heart for all the babies and children that reside in childrens' hospitals around the world. I find myself stopping in hallways, in doorways and in the parking garage to say Hi, wave at or share a smile with a "sick" child all the time.
My son has gifted me with strength, a strength I never knew was humanly possible to achieve, but now I see it all the time in a mother's eyes on the transplant floor. I've always been a fighter...but now I see I never really had something so important to fight for before. I never held the option of life vs death on a sheet of paper that had my signature on it. I never knew how hard it would be to deny your child the one thing all mothers are supposed to be able to give freely...food. How do you comfort a newborn that is hungry but has to be NPO for surgery? How do you tell a two month old the pain will be better tomorrow after they just put a hole in his abdomen and had opened up and sewn his bladder to his abdominal wall because that is the only way your child can urinate? How do you hold down your child to do hourly blood draws to make sure his potassium is decreasing so he won't go into cardiac failure? You just do...and you don't even think about it. Mommy's are not allowed time outs for good behavior or for difficult roads. That's what makes us mommy.
My son has gifted me with passion. A passion to learn more about being a living donor and organ transplant. A fire to share our experience and get the word out about the gift of life and hope. As the saying goes: don't take your organs to heaven, heaven knows we need them here. I have a deep need to help other pregnant moms that are given a poor diagnosis. I will continue to fight for the unheard voices of the unborn baby. I have gone on many mommy war paths with doctors, nurses, insurance companies, pharmacies and even family members that just don't get what kind of ordeal we live in day in and day out. I've always been pretty outspoken to begin with...but now I'm a loud and proud mommy to a preemie miracle that is plugged in to a machine twice a week that keeps him alive while waiting (with very little patience) to gain and grow and receive a kidney.
My son has blessed me with appreciation. I appreciate the fact that he can be helped. Even though this will be a life long journey, with many transplants to come...for years in between...he will be allowed a "normal" life. I appreciate every little bite his mouth takes (which isn't much, maybe a spoonful a week of something) and it makes me less "harpy" on my older son with his eating habits. I value the alone time we get each week together. I get lots of alone time with my older son since Matthew still takes three naps a day...when you are not making red blood cells...you tire easily. But I get several hours of one on one time with Matthew during hemodialysis. Not an ideal place, but neither was the NICU. And I even said then how much I would miss the one on one time...God answers doesn't he! ;) I appreciate every pound, every inch, every milestone. No matter how far off the charts we are...no matter how long it takes...we are getting there! I appreciate everyone's prayers.
My son is a wonderful little ball of boy! His laughter is infectious, his smile endearing and his feet...well they are very flexible and chimp like. ;)So, on my little fighters first birthday tomorrow, I want to thank him for all of his gifts to me. In no way will I ever repay him, but I hope a healthy working kidney will be a small fraction I can make up. I really am blessed, and I love him with all of my kidney (and heart and soul too). Happy birthday fighting Matthew...here's to many, many more. :)

numbers

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.

Three years

Three years ago at this exact time, I was getting in the car heading towards the hospital. Nowadays saying that...it's pretty expected, you could say we've changed our mailing address to Egleston Children's Hospital. But this trip, was different...it was the FIRST. Our first son was on his way and what a ride it has been.
William Ryan greeted the world at 9:37pm, 12 hours after my water broke at home, and 8 days after contractions started. A Mardi Gra party at a fellow coastie's house finally got it started. I had been walking the neighborhood, the mall and the grocery store to no avail, but standing and listening to music and big ol' belly laughs is what finally got my labor into full gear. I actually was hoping he would stay in for one more day, making him born in March. Though neither are very "manly" an aquamarine is much better than an amethyst...sigh. Oh well, beggars can't be choosers I guess. I just wanted to meet my little man.
We entered the labor waiting room right around 1:30pm and the fun began. By fun, I mean pain. I don't know why but some stupid part of me wanted to fully "experience" child birth. Yep, I experienced it...I didn't care all that much for the experience. You see, when I'm in pain - I throw up. I started throwing up right we I got up to 6 cm...right at 6pm. Epidural!!! Sweet relief arrived at 6:30pm. At 8pm I kept swearing to my nurse that I was feeling EVERYTHING again and it didn't feel good. I had to go to the potty! She kept informing me that it was too early for a first timer, but she'd get my midwife when she could. Finally at 8:45pm I got another nurse in and she checked me herself. I was READY!
They got me all situated and turned off my epidural, not that it was working anymore anyway!, and got me "into position". I pushed for 40 minutes, which I felt took forever, but was informed that was very good for a first timer. yay! *warning* - TMI coming up about "girlie parts": I was so overzealous in my pushing (contractions are nothing compared to crowning am I right momma's!), but in my mad attempt to get him out...I was torn a new one. My midwife wasn't equipped to stitch me up and had to call on the assistance of a plastic surgeon. So yes, when asked if I've had plastic surgery -yes - where? - wouldn't you like to know. ;)
William was placed in my arms and I started breastfeeding immediately, it just felt natural to me. And then my toes curled in pain and asked for a lactation consultant to help me with latching him properly. He had as much of a gusto for food as he did for life. We took him home March 1st, and our lives have never been the same. In a good way...mostly. ;)
He is the smartest little guy I've ever met, though I'm pretty positive I have mommy bias too. His accomplishments keep stacking up higher and higher from abilities to his personality. His is still a snuggle bug and wants to share cuddles with everyone. He loves to hug and be hugged and wants to meet everyone that passes by him. He is super friendly, extremely funny and down right sensitive. We were watching Toy Story 2 yesterday afternoon after his nap and the part where Jessie (the cowgirl companion to Woody) had her flashback of being a little girl's favorite toy only be discarded as the girl grows up. William rushed up to me, saying we needed to get back to the happy parts, this music made him sad.
William is the light in my eye and the song in my heart. We have SO much fun together and I am sad to say it has been cut by more than half with all the medical issues we have been dealing with in our family. You would never know it looking at him. He still runs up and gives kisses saying "I love you SOOO much mommy" (insert melted heart here) and then gives Matthew a smooch on the top of the head saying "I hope you feeling better Matthew". He gets more than I give him credit of getting. He simply astounds me at times. I am so proud of my big boy, my first baby...that regardless of being three or 70...he will always be my baby.
Happy birthday to my snuggle bug. Mommy loves you! Thank you God for giving me my William. In William's words: "I SO happy"!