Megzys World

Thursday, July 10, 2008

Welcome to Holland (aka The Beauty of Holland)
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful vacation plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very, very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland.""Holland?!?", you say." What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. ""But there's been a change in the flight plan. They landed in Holland and there you must stay." The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, 'Yes, that's where I was supposed to go. That's what I had planned.'And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

(Thanks Rhonda!!)

Wednesday, July 9, 2008

Set Backs

Best Buddies

Snoozing

Just Being Nosey

Well, after being home not only a week, we are back in Indy at Riley Children's Hospital. Mason could barely hold down any feedings so they wanted us to bring him back for fear of dropping anymore weight. Yesterday morning he had surgery for Pyloric Stenosis. This is caused by the enlargment of a stomach muscle that doesn't allow food to go down as it should. So, we had that taken care of along with a G-tube inserted into his belly. This is an alternative feeding method instead of the NG tube in the nose....in the long run, much more comfortable for him. This may not take care of the reflux issue, so another surgery may be necessary, but there is no way of knowing at this point. Mason is still having trouble keeping down feedings, but that will happen until he heals a bit more. He is quite the little trooper. He sleeps alot. He had a rough night last night, but we expected that being just a few hours out of surgery. Hopefully all the feeding issues will be solved and we can come home soon. We really miss Reece, who my wonderful sisters have been watching over...bless their hearts! I seriously don't know what I would do without the support of my family and close friends. My family has gone above and beyond to help us in any way they possibly can. I am so grateful for them and I thank god everyday to have them in my life.

Above are some pictures of Mason before we left Riley's last week.

Thursday, June 26, 2008

Celebration!!!

Quick update:

Amazing news!!!! Our Mason had an in depth hearing test and his hearing is perfect!!!! We can't believe it! Apparently, the "other" hospital did the wrong type of hearing test! Anyways, we couldn't be happier right now. God works in mysterious ways!!

Wednesday, June 25, 2008

Ok...Just Killing Time...You Really Don't Have to Read All of This!

Wow. It is amazing how things change so quickly. We are now currently at Riley's Children's Hospital in Indianapolis. (I will tell you how wonderful it is in a minute).

But this is how our day played out yesterday....quite an eventful day I must say!!

8:00 am- I am in the shower heading up to Community Hospital to see Mason

8:02 am- Still in the shower, Scott comes in to tell me Community got Mason a bed at Riley's and they will be there to pick him up in a few hours.

9:15 am- Scott and I arrive at Community to see Mason and get him all set up for transport....also our final visit with Mason's favorite nurse Diane.

9:20 am- Diane fills mom and dad in on transport details......Riley is on the way to get Mason...By Plane!

9:30-11:00 am- Scott and I feeding Mason and filling out a lot of paper work.

11:00 am- Scary people in Top Gun jumpsuits come to say they are there to take my baby! Mason quickly swept away into the Isolette on a Gurney!

11:20 am- Scott and I arrive at Gary Int. Airport to see off our Mason!

11:45 am- Iceman, Maverick, and Goose, all load Mason and his belongings into the plane. (I am crying).

12:00 am- We Have Liftoff! (can you hear the Top Gun music?) Mason is airborne! (only a 35 min plane ride!!)

Okay, so after that I get home, pack up, get a call Mason got there safely (Whew!), load up the car with Reece coming along......2 + hour car ride and Reece talks the entire time!!

Finally get here...get in to see our Mason.....he is still in one piece and as precious as can be!

Of course Reece is bored and cries he wants to go home! Scott takes Reece down the street to a hotel (which Reece told me was gross and old. Oh yeah and there was a big spider in the shower...EEEK!) Thank goodness I stayed with Mason...except no sleep here...Mason had every test under the sun! This would of taken a month at Community!! But Mason slept through the entire night!! Poor baby, tuckered himself out!

Well, coming here turned out to be a blessing....we are finding things out that we didn't know, or they didn't find at Community. I'll post more later.....

Saturday, June 21, 2008

5 lbs!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Yesterday Mason Turned Three Weeks Old, Today He Weighs 5 lbs and 1/2 oz!! On The Road To Coming Home!!

Mommy's Big Boy!

Tuesday, June 17, 2008

How Time Flies!!!

Getting Impatient

I can't beleive it has been over two weeks since Mason was born. However, it seems as if he has been in the NICU forever now!! It is so exhausting going up 2 sometimes 3 times a day...not to mention getting up twice a night to pump! (I could open my own dairy!) I am not meaning to complain, but I just want to bring my boy home!! It is so hard to leave him every single night. I know he is in good care, but I just want to get him home to start living our lives with him in our everyday activities. Reece asks every day if this is the day Mason gets to come home! I think he is even more impatient than I am!!

Scott and I feel as if we have been on a roller coaster for the past two weeks. Having a child born with a syndrome which no one has ever seen nor heard about can be the most terrifying thing for a parent to experience. The mere thought of my child struggling or hurting just tears me to pieces. At first I kept wondering "Why Me?" But now it is a different "Why Me?" I wonder why God picked me to be the mother of this amazing and special little boy. I have great fears....fears that I will not be everything he needs me to be....fears I cannot even describe. He continues to amaze us everyday....he has already beat a number of odds....he is so much stronger than I could ever be....he is just a little angel!!!

Please take a moment to visit www.cdlsusa.org.