Vote for Baby Jesus...I mean Beckett (Photo Contest)

Ben and Mandy had a little late night date night...coming up with our photo that we would enter in the NICU Helping Hands (https://www.facebook.com/nicuhelpinghandsfoundation) Photo Contest. Turns out not much has changed since we were in college. Nothing like the night before the contest deadline. :) We had SO much fun! It had to be holiday themed, so what better than a Beckett posed as Baby Jesus. :)

Hey Friends! Can you please vote for Team Gramkow's photo project in this contest? 1) Go to NICU Helping Hands Foundation (and like the page)...this is the foundation that Beckett's Neonatologist (Dr. Grubbs aka the DRG)'s wife, Lisa Grubbs is the President of (and that I'm going to volunteer with here in Fort Worth). I think you have to actually like the page to vote. 2) then go to the photo of Beckett posed as Baby Jesus and "Like" it. The one with the most "Like" votes wins! Wahoo! Thanks friends. We had SO much fun coming up with this!

How did we do it? We used Ben, Mandy, Ellie white socks for the sheep, Beckett socks for the ears, Ben's black socks. Manger base is a MandiMoo Designs wrap; The "hay" is packing material from the Phillips remote that we ordered because ours was stolen in the break in. The swaddling clothing is a bath towel. The blue sky is a Moby Wrap that Ben and I made at the NICU with the March of Dimes Family Support Group. The star is left over yellow yarn from Ellie's "Tangled" themed birthday party! Ben stood on a chair and took the pic from above. Beckett was a great model as Baby Jesus. :) TOO FUN!

Our inspiration for this photo was: http://today.msnbc.msn.com/id/45816601/ns/today-books/t/tot-sleeps-baby-bookworm-surfer-astronaut-elephant-tamer#.TwxF4JvIlc0 . Thanks Libbie (co-worker of Ben's) for showing this website to Ben!


**side note/shout out to Lisa Grubbs (um, she's amazing just like her husband)...I had never posted the whole story, but I was actually supposed to meet up with Lisa the DAY Beckett was born to talk about how I could volunteer with NICU Helping Hands. Little did I know that I would be meeting her husband, the DRG, hours earlier as he was the neonatologist on call, and the one who was at Beckett's delivery. I pretty much was beside myself when Dr.Grubbs introduced himself, and yes, in the middle of labor, I say..."Oh, I was supposed to meet with your wife today, do you think you can let her know that I'm not going to make it?" So...fast forward to 9:30 am, after Beckett had been born at 4:43 am, and Ben is passed out on the couch from the long night, and I have the light off so Ben can sleep. I'm trying to eat the nasty, dry french toast for some sort of breakfast, and in walks Lisa.....at our scheduled appointment time. Yes, she came and found me on the post-partum floor. She said "What? You're trying to eat that stuff...here are some muffins from Central Market" (which...thank you Lisa, I am addicted to Pecan Sourcream Muffins from Central Market now :) and I just gave her a big hug. And then she also brought us a birthday cake for Beckett. She said "Mandy, I know this isn't at all how you planned, but today is Beckett's birthday, and it will be for the rest of his life, and THAT is worth celebrating." And I had tears, but they were definitely tears of a different perspective. She was absolutely right. Today WAS worth celebrating, even though we knew all to well we had a long journey ahead. 

Meeting her pretty much solidified that NICU Helping Hands was an organization I wanted to be a part of...and then I also realized that she has passion, and is REALLY good at her job. I can't wait to see how I can help serve other NICU parents through this organization right here in Fort Worth. (They serve Baylor Hospital Downtown). Harris Methodist has March of Dimes Family support, but March of Dimes only approves a program within a certain mile radius. And for those of you in Fort Worth, you know that all the hospitals are in a similar area. 


Yet another way that we knew God was taking care of our Sweet Beckett...and his family. We are so thankful for the DRG and his assistant, Lisa :)


***Ok, too cute, I am blogging right now, and Ellie comes up and sees the pic of us eating the birthday cake, and is like "HEY, that's Beckett's Birthday...do you remember that?"

Welcome to Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved
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 guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all 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 stewardess 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've 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 guide books. 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 a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and 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, ever go away... because the loss of that dream is a very 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.

Weight check: 7 lbs. 12 oz!

I braved the doctor's office this morning by myself with the kids, as Ben's first day back to work was today! I was super nervous, but Ellie was a great helper, and Beckett did great too. Ellie is awesome of giving me a play by play of Beckett in the back seat of the car. She even told me the sun was too bright for Beckett. I think she loves having a buddy back there. Of course, then again I started the go go gaget arm trying to reach back to put the paci back in his mouth.

Weight check after being home 2 weeks from the NICU...7 lbs. 12 oz. I totally had to double take, and asked if that was really correct! Ha! That's almost a pound since he came home! Yay! We are doing something right! Sooooo blessed Beckett actually likes to eat! Makes a huge difference in weight gain, which I know is obvious. :) but oh so exciting for us to see! Again our frame of reference was horrible eater Ellie who had reflux so bad, she would bat the bottle, arch her back, purse those lips so hard...it was like force feeding every feeding. So frustrating. I am so thankful that when I think back about those frustrating times, it is quickly replaced by a toddler who is whining "I'm hungry" and I love it.

Dr.Hanson was very pleased with his gain, and he is trending his growth along the 50th percentile curve! (Against other preemies...we aren't on the normal growth chart yet) AND we don't have to go back for a MONTH! I repeat...A MONTH! Oh, yay, that feels like "normal" newborn checks, right? Ha...actually I don't even know what the regular schedule is, just feels more normal. :) I'll go with it. We are sticking with the same feeding plan, 4 of the feedings I can nurse, (which is going ok...been a hard adjustment getting my supply back down to match his, and well...some times he is great, sometimes not) or give him straight up breastmilk in a bottle. And then the other 4 feedings (still every three hours around the clock) we have to fortify my breastmilk (which is 20 calorie) with neosure formula enough to make it 27 calorie. We are going to continue this for the next month, and then re evaluate. Dr.Hanson said his heart murmur is harder to hear today. He does have some borderline skins issues related maybe to an exema type thing, but not anything to be concerned about yet. He does have some fluid on his boy parts too, but she said that will take a few months to resolve. He hasn't pooped now (today is the fourth), and she wasn't concerned. His belly is still soft, and she said to be concerned if he isn't tolerating feeds, and after 5 days...than call. I can tell he really needs to poop. He is eating...ok, but not great.

Just sooo happy! So happy he gained weight. I just keep kissing his cheeks and his forhead saying "Good job brave boy!" He is totally rocking this being at home thing.

We survived today. Also proud about that. I was nervous about being at home for the first time by myself with the kids (love it.  I have two kids, and get to say "kids"). They were both asleep for approximately 15 minutes at the same time, and it was GLORIOUS. I sat in our rocker recliner and took a little power nappy myself. :) AND I did get a shower in today too. I know, but this is huge stuff people! :)

Please pray for Ellie, and for her memory to be healed from the break in. She has had a hard time going to bed, and will randomly ask me if I'm going to scream and cry again. She even asked me "why would they do that?"...wow...such a hard lesson to teach your kids about sin, at age 3. Some people just are not nice, is about the best I could do. She does also follow up with saying the police helped us fix our house. We pray, but I can tell it still bothers her...which then bothers me. Which means we still need to keep praying about it.

Today was such a joy filled day. It didn't feel like a perfect day, but I can definitely cling to the good parts. Like my good friend, Casi, I'm choosing joy today. And maybe it is because I am also thinking about how we are close to his due date. He would have been a good size had he stayed in the hopper! His due date was this Friday, Jan.6, the day after my birthday. So we get to celebrate another special day with our boy!

Speaking of Casi...can you please pray for her and Dave's sweetie, Jonathan, age 2, (Ellie calls him Jon Jon) who just has his fontan heart surgery for HLHS on Dec.27. He is still at Cook's. Pray for him to keep food down, and well, he and Beckett both need to make more poppy diapers! So pray for that too. Also, please pray for Jonathan's cardiologist, Dr.Siu and his family as he had a heart attack a couple days ago while riding bikes with his son. Last I heard, he was on life support. Please pray for Casi and Dave as they entrust another doctor with Jonathan. We with sick kiddos, tend to get really close with our doctors caring for our sweet kiddos. Heart is heavy for them...

***update: I just talked with Casi, and Jon Jon just spiked a high fever tonight. And she also let me know that Dr.Siu passed away this afternoon. Please pray for his wife and kids.***

Ok, better go...time for supper...and expect more blogs...we finally got a replacement computer bought after the break in. Ben has a new dresser too. Christmas decorations are down. Ellie will start back to school (praise that she only has 2 kids in her class...yay less germs) or mom's day out rather), Ben is back to work.

Ok "new normal". Bring it on. RSV Isolation "new normal," but that's ok.