What a Christmas!

I am sitting home alone right now because my sweet little man is at Grandma's house. We all spent Christmas weekend there together and he had already spent a few days there and will spend the beginning of next week there because his preschool is closed for Christmas and New Year's break. I miss him sooooo much!!!!

Grant is doing so great and getting so strong and big. Some days I am still really sad when I think about how he could and should be pulling up and walking right now. And I'm sure he probably wants to stand up like his daddy and mommy do. In February he has SB Clinic and will see his ortho and I think we will plan surgery then to fix his feet and start bracing and standing!!!!

Christmas day went by so quickly. We opened presents Christmas eve and Grant had so much fun playing with all his new toys. Grandma let him open up several of his presents before Christmas eve night. He is so spoiled and I am sure it will only get worse as he gets older. He has the sweetest little spirit though. Today in church I was holding him close and whispering in his ear, "I love you," and kissed his cheek and then he gave me the biggest smooch and leaned over to Grandma and gave her a big kiss too. He is the biggest love bug.

And now for some pics of the Christmas fun....

Posing with his new learning kitchen



Helping Grant open a gift


Laughing with Daddy and playing with his new blocks


"Smile for the camera"


"Okay, this is the last picture. Right?"

I hope everyone had a joy filled and merry Christmas with family and friends. Happy New Year!!!

Top Ten List

10. His smile in the morning

9. His soft hands rubbing my face as he goes to sleep

8. The look of concentration on his face as he goes for my earrings

7. His new little toothie (popped in Ocotber 5th)

6. The way he bounces up and down while he's sitting in your lap

5. His loooooong, thick, black eyelashes that frame his beautiful dark gray eyes

4. Hearing him babble and say mamamama and dada

3. Feeling his arms wrapped around my neck when I pick him up

2. Getting sweet baby kisses (all wet and slobbery) on my cheek (First kiss was given Sept 9)

1. Watching him grow and become an awesome miracle of God every day

When the world stops turning

Today is the one year anniversary of one of the biggest, scariest, saddest, happiest, life changing moments I've ever been through. One year ago today I found out I would be the new mommy of a baby boy, a special baby boy with spina bifida. I thought my world had ended, felt as though I couldn't breathe, couldn't live. It didn't end, but totally changed forever. I thank God every day for my little miracle, the happiest, sweetest, friendliest, cutest baby boy in the world. If I could take away his spina bifida and carry his sickness and sorrows I would, but I can't and I wouldn't trade him for any other "typical" or "normal" baby.

We spent this anniversary at ACH, with Grant having surgery on his new shunt. Sunday, October 3rd, a small spot on his scalp incision drained a little fluid after his early afternoon nap. A small spot on the end of the incision away from his shunt had scabbed over right after surgery and I guess it allowed bacteria in or kept it from healing properly. It was swollen up a little bit and the neurosurgery resident said to just take him to our PCP the next morning. By the next morning it was even more swollen, even down his neck, and very tender. I got off work after only being there a few hours thanks to the awesome nurses I work with that took over the care of my patients. I drove to Little Rock with Grandma in the back seat watching over Grant and distracting him from the pain he was feeling.

So we spent Sunday evening in the ER with Grant waiting for the neurosurgery resident to get there to look at the CT. He wasn't the brightest star in the sky. He kept pressing hard on the sore area and saying if he could just get it to drain fluid he would be able to put a suture in it and we could go home. Thankfully, the attending new better without even seeing Grant. He has been getting IV antibiotics and ointment on the infected area. The first night after putting on the ointment it drained a bunch of blood and pus. Today Grant went to surgery again for exploration of the wound and possible shunt revision. He went back at 9:15am, and they got him prepped, a new IV in and started with surgery by 9:45am. We got a call in the surgery waiting room at 10:00am saying they were finished and the doctor would be out soon to see us. Praise the Lord it was just a wound/stitch infection. There was no tunneling under the skin towards the location where the tube enters the skull and the doc didn't want to tap his shunt to prevent introducing bacteria into the shunt. The Lord truly answers prayers.

We will hopefully be going home soon.

Laughter with a chance of tears

Surgery was early Monday morning. We had to arrive at ACH at 5:30 am so we drove to Little Rock the night before and stayed at our hotel (where I spent 19 nights while Grant was in the NICU). Grandma and Papa came too and Grant was so silly the night before. He loves his Papa, just looking at him makes Grant laugh, smile or giggle usually. Here's some pics of him playing cowboy with Papa's hat.







He was laughing so crazily and for so long. It is so great how babies find everything so fun and hilarious. We gave him a bath the night before surgery and tucked him in for a quick sleep.

Before the bath

He usually sleeps till 7 am and wakes up once to eat but I had to wake him up before midnight to get one last meal in before surgery and then wake him up early to get to the hospital at 5:30. Since I am crazy paranoid about being late, we got there 15 minutes early. Drives my husband crazy but I didn't want to be late. Here we are in the ambulatory surgery waiting room...so early.




We were in the prep center room for about an hour. Our sweet nurse let Grandma and Grandpa come back to see Grant even though the "rule" is only two visitors per patient. I got him changed into his cute little yellow hospital PJs.






He really didn't fuss even though he hadn't eaten since midnight and the OR nurse didn't come until 7:30. Grandma rocked him and held him until he fell asleep though. I think after surgery though he was upset with Grandma because she rocked him to sleep and then he woke up later in pain. He wouldn't look at her after the surgery when she tried to hold him. It was so sad.



Surgery got started at 8:25 and we got a call at 9:10 that the doctor was finishing up and they would be out soon to talk to us. The first thing that Dr. O said when he saw us was that Grant is sure a little people person. He was smiling and talking to all the people in the OR before he went to sleep. The surgery went perfectly and we could go back to see him soon. Well about an hour and half later we got an update that his IV had come out and they were having problems restarting it. Not good news to my ears (as a mommy and a nurse myself). We got back to see him and he was out of it but not crying. He snuggled up with me and his nurse helped to put his shirt on since his IV was still out. They said they had tried TEN!!! times. Even the anesthesiologist that started it in the OR after he was asleep came back and tried twice and couldn't get it. I was pretty upset that had poked him that many times but I know he had to have an IV for his postop antiobiotics. They finally called IV team and that nurse got it on the first try with the veinlite, "magic eyes" as she called it.





That night in his room was the longest night ever. I held him and he could never get comfortable. His nurses were alternating his pain medications but nothing seemed to help him rest. He would wake up every 20-30 minutes and I would have to reposition him in my lap or burp him and he would sleep a few more minutes. Around 3am he slept for about an hour, so I finally got a little sleep. It was definitely a long night for both of us and his poor little, raspy hoarse cry was so sad. He had a CT scan early the next morning and since it looked good and he never had any problems holding down his food we were discharged by 11am. The 4 hour drive home was hard on him though. Thankfully Grandma came to stay the week with us and showered him with love and constant attention that helped him through the worst days of pain. Grandma seems to be his favorite when he's really grumpy or hurting.

At home, sleeping on the couch with Cloudy

Everything is good, and he's getting better everyday. I hate that he had to have another surgery but I am thankful for it too. Praise God for each day and I am so thankful for Him and His love for Grant that is even greater than mine. I am finding normalcy finally in our "abnormal" life and not looking at his legs so often and mourning all that won't be or may never be and thankful for all that is and that can be. God's peace is the perfect peace. Grant isn't limited except for the limitations I think of or if he believes he is limited or disabled one day.

When the phone rings

Well, I got the BIG phone call today that no one wants to get. Grant will need shunt surgery. Yesterday was his spina bifida clinic appointment and he had a kidney/bladder ultrasound and saw uro and neuro. His neuro has just been measuring his head and feeling his fontanel every 2 to 4 weeks and occasionally getting a CT of his head. Yesterday was a day he wanted a CT. So we go the scan after his clinic appointment and went home, expecting to get a phone call today with the results. But somehow messages got crossed and I simply got a call from the nurse saying Grant had surgery scheduled. That totally felt like a punch in the stomach from out of no where. She apologized for the missed communication, but I was still unprepared to get that phone call. Now my little boy will have to have major surgery again.

At least we had good news in the uro department. His kidneys were growing normally and showed no signs of dilation/reflux. His bladder had only slight thickening of the walls and since he has plenty of wet diapers and can make a good stream of urine (about half the time), and has not had any infections Dr. C said we can wait 6 months before further tests. At that time we will have the VCUG, ultrasound and urodynamics.

Please say a prayer for Grant that his surgery will go smoothly on Monday and this will be the only shunt surgery he ever needs. No revisions or complications!!

Almost one year

I can hardly believe that the one year mark is coming close. October 8 is the day that my world was turned upside down, crashed and crumbled apart. At least that is how I felt that day, so numb, angry, lost and unsure of what would happen to my sweet baby boy. I remember that day so clearly. I can still see the ultrasound tech measuring a spot over and over on his back and not saying a word. Being a nurse, I knew something was wrong but I didn't ask anything since I knew she couldn't really say. I was just so amazed to see my baby boy up on the big 42 inch screen wiggling away. I can still see Dr. Seale's face as she came in the room and gave me and my husband a hug before she ever said a word. I can still feel the knot grow in my stomach and the lump in my throat. I felt like all the dreams of what my child would one day be or do were dashed. The dream of Brad teaching our little one to play tennis or basketball, getting to see his first steps were drowning as I felt like I was drowning in that room at the Obgyn office. I doubt I will ever forget that day, but it is slowly fading and the joy and wonder of what happened on February 21 when Grant arrived far over shadows those painful memories. Now we have new dreams of seeing him hopefully taking his first steps with braces and maybe learning to play wheelchair sports if he wants. I just don't ever want him to use SB as a reason to not do something he wants to do.

Grant in the NICU, only 9 days old after a nice warm bath

It seems like each day slips away and so quickly now he is 6 months old. I look at pics of Charlie and Beckett and their blogs and wish so badly Grant was so little again. I can't wait till Grant can talk and crawl and be a big boy but it seems like his sweet baby days are flying by too quickly and I can't do anything to slow them down. He is rolling over both ways now and even sitting up on his own for just a few seconds before toppling over. Physical therapy is doing wonders for him. He's eating cereal and some fruits and veggies. So far his fave is apple and blueberries with rice cereal and HATES peaches, not that I blame him, they were nasty. Now some pics of my boy in action yesterday, rolling over and sitting up!!!!

Rolling over

Last night Grant woke me up to a beautiful site at 2:15am. I found him in his crib on his tummy, crying for help. He has been rolling from his back to his tummy with help for the last few days but hasn't done it by himself yet. It was so awesome to see him reach that milestone finally. I know in the future there maybe milestones he reaches much later than the "typical" norm, so I am thankful now for those he reaches at the "normal" time. I think his PT, Rene, is really helping him now. I think at his next SB clinic appointment with the ortho I am going to push really hard to have surgery before 12 months to fix his legs and feet. I want him to be able to start sitting with his legs in front of him and straight and to start standing in braces sooner that later.

Always flirting with the camera