Friday, December 23, 2011

They Got It!!

Jennifer sent an e-mail to some friends and family earlier in the week asking for prayer as another attempt would be made to draw blood from Janie Grace today (Friday). We're very pleased to let you know that today was successful on just the 2nd attempt!!!! Janie even let the nurse take 3 syringes worth of blood! Without exaggeration, Christmas came early at our house, particularly for Jennifer and Janie Grace. I was so relieved when Jennifer called.

As you all know, blood work is part of the routine exam administered to young children at wellness visits. We've come to learn that blood work is even more important for children with Down Syndrome as, among other things, thyroid issues aren't an "if" but a "when". Therefore, it's vital for Janie to have extensive blood work done every six months as undetected thyroid issues can impair development.

You may recall that Janie has never been one to give up her blood real easily. Despite valiant effort, the experts at Brenner even struggled. The day before her heart surgery, the surgeon had to draw her blood in a manner considered to be risky (apparently reserved for surgeons only), but Janie had given no other choice!

At her 1-year appointment last week, the pediatrician's office was unsuccessful. A facility we were referred to, where we'd been when she was tiny, was unsuccessful earlier this week after an hour's worth of attempts (not fun for Jennifer and Janie at all...both were in tears).

Apparently, Janie has several issues working against her with respect to a successful blood draw. 1) She's little. 2) She's a heart baby. 3) She has Down Syndrome. 4) Ironically, she's chunkin' up a bit (which we just laugh about these days considering the level of stress we had about her weight 1 year ago this time).

At the recommendation of some nursing friends (thanks Rebekah & Krista), Jennifer took some notable measures. 1) Janie is probably more hydrated at the moment than she's ever been. Last night, I put pedialyte in her before bed and her normally soft belly felt like a brick! 2) On a sunny 62-degree day in Greensboro (feels just like Christmas!), Janie was wearing a sweater and was covered in a blanket on her way to the doctor in order to make her really warm. Perhaps it was these things or the expert hands of the nurse, but we're suggesting that lots of prayers didn't hurt either in allowing today's attempt to be successful. Therefore, look for an email asking for prayer the week of JG's blood draws in the future and also be aware that there might be a shortage of Gatorade in the stores that week!

Merry Christmas!

Thursday, December 22, 2011

A Christmas Miracle

Close friends of Jennifer's family from their days in St. Louis recently added a new member to their family. Steve (Jennifer's childhood friend) and his wife, Natalie, recently had a son named Luke. The following tells of his birth and first days on earth as narrated by his grandparents (Jim & Becky) who are close friends of Jennifer's parents. Jim & Becky will be sharing this at their church during its Christmas celebration.


During this time of year when we celebrate the birth of our Savior, I believe you'll find yourself glad that you took time to read this story of Luke's birth...

WE HAD BEEN ANXIOUSLY AWAITING THE ARRIVAL OF OUR 5TH GRANDCHILD AND WE KNEW THAT OUR SON STEVE AND HIS WIFE NATALIE WHO LIVE IN PHOENIX WERE HAVING A BOY. THE SURPRISE WOULD BE HIS NAME. NATALIE HAD GONE TO THE HOSPITAL TO BE INDUCED. THE FAMILY HAD A GROUP EMAIL GOING, WHERE WE’D BEEN HEARING ABOUT NATALIE’S PROGRESS AND WE’D BEEN SENDING ENCOURAGING WORDS BACK TO THE COUPLE. AT TIMES THE COMMENTS WERE LIGHT HEARTED AND FUNNY, LIKE WHEN STEVE SAID THAT NAT DIDN’T APPRECIATE HAVING HIS PEANUT BUTTER BREATH IN HER FACE. NATALIE HAD BEEN IN LABOR ABOUT 24 HOURS AND STEVE’S LAST EMAIL HAD BEEN AT 6 AM - SHE WAS 6 -7 CM DILATED AND THE DR. WAS HAPPY WITH HER PROGRESS. ABOUT 11:00 I GOT THIS TEXT…. “DON’T HAVE TIME TO EMAIL, PRAY FOR HIM HE WASN’T BREATHING AND ISN’T DOING WELL”

DURING THE NEXT HALF HOUR I PASSED THIS NEWS TO OUR FAMILY. OUR DAUGHTER IN LAW, BEE, SAID, “LETS PRAY RIGHT NOW ON THE PHONE” AND SHE BEGAN …”LORD WE’RE ASKING YOU FOR A MIRACLE FOR THIS LITTLE BABY, WE DON’T EVEN KNOW WHAT’S WRONG, BUT WE KNOW YOU CAN HEAL HIM AND MAKE IT ALL RIGHT. WE ARE BEGGING YOU TO DO THIS SO THAT WE MIGHT GIVE GLORY TO YOUR NAME AS WE TELL THIS STORY IN THE YEARS TO COME.” JIM AND I ARE STANDING HERE TODAY TO GIVE GOD THE GLORY FOR LUKE’S MIRACLE.

AS STEVE GOT THE CAMERA READY TO TAKE THE PICTURE OF LUKE’S BIRTH AND NATALIE LEANED FORWARD IN ANTICIPATION, THE SCENE THAT UNFOLDED WAS QUITE DIFFERENT THAN THEY EXPECTED. LUKE CAME OUT BLUE AND TOTALLY LIFELESS – THE DR AND STAFF WORKED QUICKLY AND EXPERTLY BUT STILL WITHOUT ANY SIGNS OF LIFE. ONE OF THE NURSES CAME CLOSE TO STEVE AND NATALIE’S AND SAID … “IF YOU ARE PRAYING PEOPLE, NOW WOULD BE THE TIME TO PRAY” AND HER FACE LOOKED SO GRIM STEVE JUST STARTED PRAYING OUT LOUD … “DEAR GOD HE SAID PLEASE BE MERCIFUL” AND NATALIE SAID SHE THOUGHT OF GOD’S MIRACLE WITH LAZARUS AND ASKED GOD TO BREATHE LIFE INTO HER SON.

STEVE IS A MEDICAL PHYSICIST IN THE ONCOLOGY DEPARTMENT AT THE HOSPITAL AND KNEW THAT THEIR NURSERY ICU WAS WELL REGARDED, BUT HE WAS ABOUT TO FIND OUT FOR HIMSELF. AFTER THE MEDICAL TEAM TOOK LUKE DOWN TO THE ICU, STEVE FOLLOWED AS SOON AS HE COULD LEAVE NATALIE. WHAT HE SAW BROKE HIS HEART. THEY HAD PUT LUKE ON A BREATHING MACHINE, AND AT THAT POINT HE WAS STILL NOT SHOWING ANY SIGNS OF LIFE. IT WAS ABOUT THEN THAT I CALLED BACK FOR AN UPDATE AND STEVE SAID THAT THE SYMPTOMS INDICATED THAT LUKE HAD BEEN WITHOUT OXYGEN FOR A CONSIDERABLE PERIOD OF TIME AND THERE WAS BRAIN DAMAGE. IN ORDER TO MINIMIZE FURTHER DAMAGE, THEY WERE GOING TO PUT LUKE ON A COOLING BLANKET AND LOWER HIS BODY TEMPERATURE TO 92 DEGREES AND HOLD IT THERE FOR THREE DAYS.

WE LEFT FOR THE AIRPORT IMMEDIATELY AND ARRIVED IN PHOENIX ABOUT 8; WE WENT STRAIGHT TO THE HOSPITAL AND AFTER A GROUP HUG, WE WENT INTO THE NURSERY ICU TO SEE OUR NEW GRANDSON, WHO WE NOW KNEW WAS NAMED LUKE ROBERT (AFTER MY DAD). WHAT WE SAW WAS A 8’…22 ½” BABY WITH TUBES AND SENSORS EVERYWHERE, HE WAS SOMEWHAT BLUE FROM THE LOW BODY TEMPERATURE, BUT NO LONGER LIFELESS. HE WAS WIGGLING HIS ARMS AND LEGS AND TRYING TO CRY OUT, BUT COULDN’T BECAUSE OF THE TUBE DOWN HIS THROAT.
STEVE SAID, “ THE NEXT 72 HOURS WILL TELL.” SO FOR THREE DAYS WE STOOD VIGIL IN SHIFTS HOLDING HIS LITTLE ARMS SO THAT HE WOULDN’T TEAR OUT THE TUBES, - AND WATCHING; KNOWING THE TORMENT HE WAS SUFFERING BECAUSE OF THE EXTREME COLD AND THE BREATHING TUBE. I DON’T THINK LUKE SLEPT AT ALL DURING THOSE THREE DAYS.

ON MONDAYAFTERNOON THEY WARMED HIM UP AT ½ DEGREE PER HOUR AND ON MONDAY NIGHT STEVE GOT TO WRAP HIM IN A WARM BLANKET AND WATCH HIM FALL ASLEEP. ON TUESDAY MORNING, LUKE WENT DOWN FOR AN MRI. THE NEONATAL DR. SAID THAT THE MRI WOULD DEFINITIVELY TELL WHERE THE BRAIN DAMAGE WAS AND HOW SEVERE. THEN PLANS COULD BE MADE FOR HOW TO DEAL WITH THE FUTURE. STEVE USES MRI’S EVERY DAY TO PLAN RADIATION TREATMENTS, SO HE WENT WITH THE RADIAOLOGIST TO REVIEW THE MRI’S. HE CAME BACK TO THE WAITING ROOM WHERE WE WERE GATHERED AND REPORTED “THEY WERE PERFECT”. NO SIGNS OF DAMAGE. I CAN’T DESCRIBE, OR FRANKLY EVEN HOLD IN MY MIND, THE EMOTION I FELT AT THAT INSTANT. WHEN WE CALLED OUR DAUGHTER SHANNON, SHE SAID, “I WANT TO FALL ON THE FLOOR AND WEEP FOR JOY.” WE ALL DID.

WE KNOW GOD HAD HIS HAND ON LUKE AND WE THANK HIM FOR HIS LOVING MERCY. WE ALSO THANK OUR FRIENDS AND FAMILY WHO SURROUNDED LUKE IN PRAYER AS WELL AS STEVE AND NATALIE. A FEW HOURS BEFORE LUKE WAS BORN SHANNON AND BEE HAD WANTED TO SEND A VERSE TO ENCOURAGE STEVE… GOD BROUGHT THE REFERENCE DANIEL 4:2 & 3 TO HER MIND AND SO SHE READ IT… SHE WONDERED A LITTLE ABOUT THE MESSAGE, BUT THOUGHT IT WAS GOOD AND SHE SENT IT TO HIM IN AN EMAIL, BUT NOT UNTIL THE WHOLE STORY WAS LIVED OUT DID WE KNOW WHAT A GIFT THOSE VERSES WOULD BE. IT READS:
IT IS MY PLEASURE TO TELL YOU ABOUT THE MIRACULOUS SIGNS AND WONDERS THAT THE MOST HIGH GOD HAS PERFORMED FOR ME. HOW GREAT ARE HIS SIGNS HOW MIGHTY HIS WONDERS! HIS KINGDOM IS AN ETERNAL KINGDOM, HIS DOMINION ENDURES FROM GENERATION TO GENERATION.


Amen.

Friday, December 16, 2011

Janie Grace Pics & Video






What is a G-tube Anyway?

Truth is...I still don't get it. I'd recommend asking a GI doc if you're really curious. However, here's a picture of Janie's first one that was put in back in August and changed out a couple weeks ago. Right before our eyes, this one came out and the new one was functional within a matter of a minute in the comfort of a simple exam room. Supposedly, we're suppose to be able to do this procedure ourselves....RRRRight! Fortunately, with Janie eating as she is, we're hopeful the one she currently has will be her last. It'll need to come out around March. (Apparently, the device wears out and there are different sizes based on the size of the patient. Janie got a bigger size this time around since she's grown!) With flu season done by March, the doctors should be confident she can be done with it permanently, and they'll let the "hole" heal up. Hopefully, that will occur naturally. Otherwise, it might require a small procedure.

As I understand it, the balloon at the bottom is what holds the device in place. It expands and presses against the stomach wall so that, theoretically, it cannot be pulled out. Needless to say, children do pull them out all the time. We really hope that thing stays locked in position until March!

(Jennifer is holding it using a syringe so you could better see it. The flap to the left folds over and seals the top of it when it's not being used.)



Thursday, December 15, 2011

Jensen's Performances

During the last few days, Jensen has sung Christmas songs with her pre-school classmates and had her first dance performance at a senior a living facility. We were so proud of her dancing and singing.

These aren't the greatest pictures but it gives you a little glimpse into the experience.

Jensen with two of her good friends (Julia & Ellie)


Jensen is seated, closest to the camera


The circle of life.






Jensen is in the middle row, 2nd closest to the camera.






School Program. Jensen is seated in the front row, 5th or 6th from the right in all red.





Weekend Pics

Janie Grace took her first official grocery cart ride at Costco.


I had a great shot of the girls all lined up and then Jensen...(not sure how to describe that!)





Finally, the kids enjoyed a slumber party next to the Christmas Tree.

Wednesday, December 14, 2011

IU Beats Kentucky

As a longtime fan of Indiana basketball, I am pleased that IU is back on the national scene after a compelling upset of #1 Kentucky last Saturday. Plus, a highly-touted class of recruits coming in next year ought to keep IU relevant for several years.

That fact alone is probably not worthy of a blog post...although it's close. However, combine my favorite college basketball team (the Hoosiers) with my all-time favorite movie (Hoosiers) and you get a you-tube video that ought to provide a goose bump or two for even the most loyal Purdue fan.

So here it goes...a replay of the game-winning, buzzer-beating 3-pointer by IU this past weekend set to the music of Hoosiers' climatic scene. If you have a pulse, you'll feel a kick of adrenaline. If you're familiar with the scene in Hoosiers where Jimmy Chitwood nails the game-winner at Hinkle Fieldhouse (Butler), you'll find some striking similarities in this clip.

Coach Crean's facial expression is priceless.

Monday, December 12, 2011

JG's B-day Party

Janie Grace's birthday party didn't happen as intended, so, with a little improvisation, she got her due thanks to a Plan B from the Millers and Mansfields (and Jennifer's college-roommate, Kate).
















Friday, December 9, 2011

Christmas PJs

So we have this red sleeper labeled "Baby's 1st Christmas" that all the kids have used. Here is a pic of each of them wearing it. I don't think there's much doubt they're all siblings!

Jacob


Jensen


Janie Grace

Thursday, December 8, 2011

Pics of Janie's 1st Year, Part 5

July - at the beach



July - learning to eat baby food



August - the sedation from her G-tube surgery was wearing off. This is the one and only time we've seen these evil eyes!



August - heading home from the hospital...no more feeding tube in the nose!




September - time for glasses!




October - Flower for Halloween




November - sitting


December!

Pics of Janie's 1st Year, Part 4

May - Recovering from surgery at home







June - Feeding tube in at Ocean Isle.


June - Feeding tube out at Ocean Isle Beach!...oops





An all-time favorite from June



Pics of Janie's 1st Year, Part 3

April - Hit 10 lbs leading up to surgery!




April - morning of surgery




April - Immediately after surgery (fixed and has flourished since!)





Thanks, Dr. U!





Glad to be going home!



Wednesday, December 7, 2011

Pics of Janie's 1st Year, Part 2

February 2011


March 2011 - back in the hospital with GI uncertainties (ended up that everything was okay).

Pics of Janie's 1st Year, Part 1

Jennifer went through and pulled pics of Janie since her birth. We'll share a few with you over several posts. Some will be familiar. Others are pre-blog. It's the first time we've (or at least I've) gone back and seen the progression of her development (or lack of development at times.)


I'd admit that a couple were hard to look at (not because of how she looked, although the heart surgery ones were more difficult to look at now than they were 6 months ago) but because they served as a reminder of the stress and challenges she and we endured. We're so thankful to be where we are today and thankful for the process we've endured to have her at the point where she is today.


December, 6 2010


December 25, 2010


January 2011 - losing those chubby cheeks!






Late January 2011, hence, the feeding tube

Tuesday, December 6, 2011

Happy Birthday, Janie Grace!

It's become cliche to make this statement, but we simply cannot believe that it's already been one year since we were holding JG for the first time. Our lives have been immeasurably blessed by Janie's first year on earth. She's added depth to our family, made friends with strangers everywhere she goes, brought healing to relationships, reminded us of the priorities of life, encouraged us to smile more since she never stops grinning, and visibly demonstrated that the miracles of the Bible still happen today.

A sentence or two here will never be enough, but Jennifer and I want to humbly thank the hundreds that have prayed for Janie Grace during this past year. When we look back on these 12 months, we often shake our heads in disbelief at what we've experienced and how the Lord has pulled us through via His strength and your prayerful support, acts of generosity and constant provision of our physical needs. We're tickled that Janie Grace occupies a little corner of so many hearts given that her own heart needed such significant repair!

Janie, our family's life without you would be less full, less joyful and less dependent. We cannot wait to see how you surprise us in 2012!