Update with Ellie (the 30 pounder) and Beckett (the 9 pounder)

Get excited. I'm binge blogging. Third post in one night! Wahoo! Ok, well the other two were mainly pictures, but that's ok!

Here are the latest two teaser pics of our photo session with our good friend, Tina (Fall Meadow Photography and Design).

Yep. Things are busy. So I understand when I post on facebook that I will update the blog soon, and than I don't, you are skeptic. I will eventually stop apologizing for my length in between posts. I do feel bad. I do. I love sharing what is going on in our world. I finally got a photo downloading from our camera to computer (yes, that's right...the engineer finished the computer!) tutorial, so blog posts should pick up a little. Our kids are so cute, so it makes it easy! 

Like this one. Ellie is like "Guys, guys...I got this" (Ben took this pic)

Ellie LOVES her bike! (As you can see in the first of the binge blogging posts). She got it from some sweet people for Christmas. We may or may not have had to take the Size 3 Toddler size helmet back for the Size 5. Poor girl has her dad's large head. (To fit all those brains of course). She peddles really well. She did have a run in already with the handle bars. Turns out steering is her downfall. As you can see in the pics, she likes to watch her feet peddle. Ellie colors like a champ, really stays in the lines. She also can write her name! Kinda feel like I've already told y'all this, but I'm still going to go with it. She loved the other day when we played tea party with "tea" water and hershey kisses! Beckett had a plate too, but he slept thru the whole thing. Ellie watches a lot of Dora these days. You'll have that. 

Today was Kansas Day and so we made some Kansas Dirt to celebrate. We talked about how Ellie and Daddy were born in Kansas. So now she says "I was borned at Kansas...and I was so so tiny." We also made some for our fellow transplants, and Ellie said "Avery and Campbell are going to be so so happy." Apparently she is in a so so phase. It cracks me up! She is so grateful for everything lately. It makes giving her gifts so fun. Today I came home from getting groceries after church, and she said, "Oh, Mama did you bring us some food? Oh, Thank you mama. Thank you for bringing us some food. She was super happy about the doughnuts. After all, she said she LOVED them. She pretty much said this about every food item she helped me put away. She teaches me daily.

And the other amazing Tina photo: 

 
As far as Beckett news goes...I'll try and be brief. I'm hitting a wall, and that 2 am feeding will be here before I know it.

1. He is still really cute.
2. On Thursday we went to his 4 month check-up (almost 3 weeks adjusted age) with our pediatrician, Dr.Hanson, where Beckett weighed 9 lbs. 1.5 oz. He grew in length, and his percentage on the growth chart for length is now in the 70th percentile. This is against other preemies. For weight, he is growing steadily along his curve, which is what we want, and its in the 50th percentile.
3. He is still eating between 75 and 90 mls every three hours. We got the ok to let him go one 4 hour stint at night, but still need to get 8 feedings in a 24 hour period. One more hour at night! We will take it! He isn't really breastfeeding the greatest, but I am still pumping 4 times a day. It's all good...we will keep trying.
4. Reflux. He has it some, but it isn't every feeding, and not consistent enough to make any changes. We have had a few rough nights, but in the grand scheme, so thankful again its not every feeding like it was his sister. I'm trying to write things down better so I can really tell how his feeds are going...and to see if there are any patterns.
5. Rotavirus....well, he missed his first dose because they don't give it in the NICU (its a live virus). But we got the second, and will get the third, so hope that is good enough! He got his other 4 month shots, and Ellie told him he was so brave.
6. While we were assessing every detail about Beckett. Ok, while I was going thru my post it note of questions, Dr.Hanson noticed that he has a sacral cleft. (meaning a little gap in his tailbone area). So, we are scheduled for a spinal ultrasound at Cooks on Tuesday. We are praying it comes back normal. We really don't think its spina bifida, but it maybe could be a tethered cord. BUT we are not going to go there....we shall wait until the results.
7. I found out his last visit that I am having hard adjustment going from talking to the DRG every day about Beckett and his progress to a pediatrician, Dr.Hanson who sees us for "x" minutes, every "X" weeks/months. She does take time with us, I'm not saying that...its just different. But we will get there.
8. We go back in a month for another weight check.

So what's up this week?
Please pray for his Spinal Ultrasound on Tuesday
Early Childhood Intervention Evaluation on Wednesday (developmental assessment to see if he qualifies for services)

Love to all, and to all a good night!
Mandy for Team Gramkow

Photo Caption Contest: Prize Awarded

This photo made both Ben and I laugh OUT loud, for real! So we thought it'd be fun to do a Photo Caption Contest! AND....the prize is an autographed by Ellie print with your caption underneath!

What's your caption?
Ready. Set. Go!
(Winner will be announced Wednesday, February 1)

Photo Blog: Let's Go Ride A Bike...

Oh Yeah! We have a Gainer!

Today we had our first ECI (Early Childhood Intervention) appointment, which consisted of a lot of paperwork and me answering questions. He won't have his "official evaluation" until Feb 3, but Sarah (yeah, super sad we couldn't get Melissa again) brought the scale and such so we could still measure away!

So Little B man today weighed:
8 lbs. 8 oz. (Granted I actually haven't calculated if that really is good for his daily gain, but its obvious that he at least weighs more than he did on Jan 2 which was 7 lbs. 12 oz.)
He is 20 3/4 inches long
His head circumference is 14 3/4 inches

I have to say...he would have been a nice size full-termer if he would have stayed in the hopper.

Happy 1 week adjusted age Little Beckett. And so it begins...your life with two ages. You know you're a NICU parent when, after age two, you still struggle with whether to tell people his real age or adjusted age.

I still need to order that onesie online that says "I'm older than I look."

And yet, again....more blasted head turning for the photos. But look at these today from my phone...they are much better than yesterdays! LOL!

You know you're a NICU Parent when...

Hello faithful blog followers. Maybe it is just Mom, Wendy and Grandpa Whipple who haven't truly given up on me yet.

Pray for my poor husband who is working dilligently on our computer. Yes, my engineer is still building the computer. He got some parts here, some parts there, and has ordered some from amazon, she's not pretty on the outside, but I'm sure in no time will run like a champ. But he has run into some problems, I mean...he actually is just sharpening his critical thinking skills. He is my hero, patience of a saint. I am so sure I would have run to Best Buy after the first problem, I mean critical thinking situation, and bought one. But...Big B man is charge of la computadora in this household.

Can't figure out how to rotate the pics when the post to the blog from my phone. Annoying. Just turn your head, it'll be fine. And they are pixelated. Also annoying, but as you can see...I am a little sparce on time these days. Love having two kids, but really...you moms out there with lots of kiddos...how do you do it? You rock!

I am tired. But lots of things are funny when you are tired. So that is a perk. Laughter is always good.

I will have you know I did get a shower in today finally at 6 pm! You know, if everyone just waited until then to shower, they might be a little more appreciative. I know I am!

So tonight was family road trip night. Some of you might have already seen my facebook post.

You know you're a NICU parent in RSV isolation when "going out to eat" means Chick-Fil-A drive thru, and eating in the car with the whole fam. We just were glad Ellie wanted to eat in the car! Then we headed to Walmart (because I had to) to return the too small of a bike helmet that I had gotten Ellie, and needed some eggs. So ran quick while the Big B and kiddos waited in the car. Which leads me to my next...

You know you're a NICU parent in RSV isolation when you choose to pay with cash so you don't have to touch the germ filled credit card paypad because you realize the couple in front of you used it to pay for their cold and cough medicine. AND trust me I sanitized before I even got back to the car. Ha! And everyone who knows me well, I know, is saying of course she did! And yes, Casi Faulk, I did hold my breath in the line for a little bit (LOL). Seriously people, my 3 year old can cough into her elbow!

Showered after getting home from Walmart. Surprised? :)

I've been busy here in my RSV isolation...let me share a bit.

Beckett. Still a rock star. We had a few nights of fussy baby, which I think might be attributed to reflux. He pulled out the Ellie bat the bottle swing a few times which reminded me of those hard days feeding her. Don't know what the deal was. Although he still is not a frequent pooper. We have been offering him close to 90 mls each feeding by bottle, and he has done pretty well. Still eating every 3 hours, per doctors orders. He took 120 mls for me last night. Once.

You know you are a NICU parent, when you still refer to milk volume in milliliters, even though you could convert to ounces. Oh yeah, my kid is big enough to eat larger volumes now.

He is breastfeeding ok...off and on, but we are still trying. He has some long awake periods couple hours, which I tell myself is a one up on being a 4 month old newborn. Daddy tried him on tummy time today, now that we have the ok from OT now that he is 41 weeks gestation. We are scheduled to visit the pulmonogist on Friday for Beckett's second synagis shot. Been super happy their office has been proactive with our insurance and specialty pharmacy to make sure it is delivered for appointment time. So thankful! Do some of you remember the synagis drama with Ellie? Still so thankful to Aunt Alice for helping us out back then being a synagis transport! We are back to see Doctor Hanson on Tuesday for his 4 month check. Also, we are getting an eval to start ECI (Early Childhood Intervention) to assess Beckett's development. As with most preemies, this begins the "wait and see" process to see what he is going to be able to do, motor skill wise especially. Prayers for that are appreciated.

Ellie. LOVES being a big sister, but I think really wants to be mom. She races me to Beckett when he cries to get the pacifier in his mouth. We talk a lot about being gentle. Which I think she understands for the most part until I see her talking sweetly to him, while she has a death grip on his hands to the point where his fingers are turning white. Not cool. I also busted her stroking his hair which started out nice, but then turned into the vulcher grip on his head. Again not cool. All that aside, she does LOVE him. He cries, and she tells me right away that he probably needs his paci, or maybe he is hungry mom. She helps me pick out his outfits, and loves to roll up his diapers and throw them away. We wash hands a lot. Which leads me to...

You know you're a NICU parent when you send your 3 year old to the bathroom to wash her hands, and she asks you "for three minutes, mom?" She also knows how to use hand "sanditizer" really well. We actually probably use more than we need to now that we have a helper running the pump. :)

Ellie is totally into puzzles right now. She does them so well! She also really loves writing letters and numbers (thank you Tracie Gramkow and fam) for the dry erase board. She loves it! She writes her name all by herself, not always in the right order, but we are working on it! Today she spent most of the day as a mermaid (thanks to Aunt Audrie and Uncle David's dress up gift), and the other night we watched the talent portion of the Miss. America pageant and Ellie dressed up and danced with all of the "ballerinas." Yes, Patricia Beer...you would be proud! :) Ellie makes us laugh all the time! She is such a mini-adult when she talks. You never know what she is going to say. Please do continue to pray for her and bad dreams, we think still from the break in.

What does our new normal look like these days? I tell ya...this second child thing is rocking my TYPE A organized, clean freak world. A mountain of unfolded laundry regularly shows up as a new piece of furniture in my living room. My sink is never empty of dirty dishes....bottles, pumping dishes, pacis that have dropped on the floor. Ellie's room has looked like an F5 tornado for the past three days. I can NOT complete any task it seems from start to finish. Gotta love when you forget to start the dryer, so than you are a wet load behind! Ugh! I don't even realize it is dinner time, and that Ben will be home soon, until quarter to 5...oh, oh, but then that is also when I realize it's time to feed Beckett again. I finally have concluded that my "To Do" list should only have one thing on it, so I might actually have a chance to meet my goal.

What I enjoy as the fun stuff is....kissing my Beckett like 65548 times a day; Ellie wedging herself in the recliner next to me everytime I feed Beckett, just so she can help hold the bottle and burp him; Ellie being my number 1 helper and runner of getting diapers; getting up and doing the silly dance to music at the end of Olivia episodes,;being a pajama mama most of the day (this is however two fold...its comfy, but too many pajama mama days isn't good, not that I ever feel the need to wear an old prom dress, but at least jeans. Just sayin'), holding Beckett and snuggling, anticipating when Ellie's face lights up as she hears daddy coming home.

Ah... the life with a toddler and a four-month old newborn. Wouldn't trade it for the world. So blessed. So. So. Blessed.

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.