Well, I did want to post this on the blog not only to share with those who couldn't be there, but also because I am after Ellie's First Birthday going to convert this blog to a book (I think I can do it through thecutestblogontheblock.com). I want Ellie to know her story and the ways in which we shared about it too.
Ronald McDonald House Charities of Northeast Kansas
Denim to Diamonds 7th Annual Dinner and Auction
Saturday, August 15, 2009
Capitol Plaza Hotel in Topeka, Kansas
My name is Mandy Gramkow, this is my husband Ben, and this is our daughter Ellie. I’m here to share with you our story, the story of Team Gramkow.
September 3, 2008, is a day that my husband and I will never forget as our world was turned upside down. I had a rough week physically with my pregnancy leading up to that day and decided to move my doctor’s appointment up. My doctor’s visit lasted short of what seemed to be 5 minutes as my doctor hurriedly told us to get to the hospital where I would be life-flighted to Topeka. Laboring at 28 weeks, I was 5 cm dilated and 100% effaced.
When I got to Stormont Vail, the accepting physician said that he wasn’t going to wait for me to deliver in the room. So much was happening so fas and he called for an emergency C-section. They gave me general anesthesic (which I was quite thankful for after the morning events!) and when I came too, I learned that we had a little girl. I thought for sure that it was a little boy causing all this drama.
Ben had followed our little 2 pound, 7.5 oz. baby girl, Ellie Jo, to the Neonatal Intensive Care Unit. I knew a NICU probably existed, and had heard about premature babies, but boy, the first few days at the hospital learning about our little Ellie’s condition – I had no idea how fragile this little life was. Ellie’s eyes were both still sealed shut, she had severe bruising on her head and face, and was immediately placed in an isolette to keep her warm. Her skin was sticky. Her little ears were thin like paper and plastered to her head. Ben and I are life-long students, but this was a course like none before.
From day one, we had to remind ourselves that this was part of God’s plan and Ellie just couldn’t wait to meet us. Not everyone gets to see on the outside the amazing miracle of life and the development of a baby during the last trimester. We had to wait three days just to hold our little girl for 6 minutes because she couldn’t tolerate too much stimulation. What a hard lesson to learn too – when you can see your baby lying there, but can’t do the things that parents are supposed to get to do. We couldn’t do anything but stand by our little girl’s side and watch her continue to fight for her life. Ellie was off the ventilator after day 2. Her first feeding of breast milk was 2.5 mL on day 3. (there are 30 ml in one ounce and I will forever that!) Each day she amazed us more and more. God protected Ellie from infection and some potentially major bowel diseases. It’s a lot to ask a little premature baby to start eating, using her bowels, using her lungs – all things that were supposed to mature in the womb that last trimester.
Why me? Why us – this is our first baby, we’re both busy graduate students at K-State…a perfect pregnancy would have been nice, please……this just wasn’t the way it was supposed to happen. I had everything planned. This didn’t go according to plan. This baby came three months too early!
I’m sure every parent who has a premature baby or even a sick child can empathize with our feelings of the “unknown.” The emotions of worry if my child is going to make it too tomorrow are not pleasant. Those emotions are absolutely exhausting.
I remember the night before I was going to be released from my post-partum floor. I asked Ben where we were going to stay while Ellie was in the NICU. We found out about the Ronald McDonald House (which I shortened and call Ronnie’s) and went to check it out. They said it was just a few blocks from the hospital and that they had a room for us. I so did not want to leave that hospital and didn’t check out until the latest time I could. I didn’t want to leave Ellie. When we got there, I remember my eyes filling with tears.
It looked like a beautiful house and when we got inside, I started crying even more. In the entry way, Ben showed me a cupboard of tiny hats and dresses that we could pick out and take one for Ellie. A huge kitchen had wonderful snacks and baked goods on the counter.
There was a fridge for us to store our own food in and a fridge with food to share (gotta love those papa murphy’s pizzas).
Ben showed me the comfortable living room, the scrapbooking table where I could make a little sign for Ellie to put up on the baby board in the kitchen,
a computer to check e-mail, update our blog with how our little princess is doing, oh yeah, and to work from a distance and do homework…the tears just kept a flowing. He showed me downstairs where we could do laundry and the family room where we could watch TV for a break.
He showed me upstairs to our room (even with sleep number beds) where my dad and Ben had already unpacked our stuff. He showed me the breastmilk freezer….yes, that’s right a freezer just for breastmilk. They also had two hospital grade breastpumps for us to use. What a blessing. Now I’m sorry if that was too much information for some of you…but hey, especially to a NICU baby, that stuff is liquid gold! Plus, for me, that aspect was very important because it was something only “mommy mandy” could do for little Ellie. I couldn’t hold her 24 hours a day like most mom’s get to right after their little ones are born, I couldn’t take her home after a few days stay, but I could produce her food to for her little fragile belly to learn to eat and digest, even if it did only start out at 2.5 milliliters. I was able to use the pumps at Ronnie’s and freeze the milk to take into the NICU the next morning. Wow – the Ronald McDonald House was too good to be true, such a perfect place to meet our basic physical needs and be our home away from home – so we could truly be where we needed to be – with our little princess.
The first couple weeks Ellie was in the hospital were the hardest. But, we noticed we weren’t the only ones in this “boat.” There were other NICU mom and dads that we met at Ronnie’s. We would literally spend all day at the NICU and come home just exhausted. We’d ask each other how the “day” was because really…we all learned that we had to just take it a day at a time. The scene usually looked something like this – we’d see each other in passing at the NICU as we went in and out of our little one’s rooms, we’d see each other at lunch maybe in the cafeteria, and we’d see each other hovering the NICU door waiting to get back into the NICU after the half-hour the doctors and nurses needed with our babies. We’d all get back to Ronnie’s at oh, maybe 10 or 11 pm and would raid the fridges and have our late night talks and updates. We were able to support each other because we all were going through it together. I will always remember and even still keep in touch with the parents I met through Ronnie’s.
We were blessed to have an amazing medical staff at Stormont-Vail care for our little princess as she spent 71 days with her NICU family. I think we spent around 60 of those nights at the Ronald McDonald House. We celebrated on November 13 as we got to take our little Ellie to her home in Manhattan, all 6 lbs. and 7 oz. of her! One week before her due date of November 27. Needless to say Thanksgiving had a whole different meaning.
In May, both Ben and I graduated with our Master’s from K-State, which was a joyous day because we really wondered if we’d get everything caught up after Ellie’s early arrival. In June, Ben started his job in Fort Worth, Texas while I stay at home to care for Ellie. Last week, Ellie started crawling and we couldn’t be more proud. She’ll celebrate her First Birthday in THREE WEEKS! I can’t believe how fast the time has gone, although when Ellie was in the NICU it seemed like time stood still!
We forever will be thankful to the Ronald McDonald House for allowing us to have a home away from home during Ellie’s NICU stay. We can’t wait until we can pay it forward and help other families in need through the great work of the Ronald McDonald House. However, Ronnie’s here in Topeka, Kansas will always hold a special place in our heart and we thank you for that.
So funny, I had kindof thought she might be double jointed because seriously she can touch her wrists behind her back with her arms straight....and she does sit in the cheerleader/hurdler pose quite often. 
But yeah, Ellie apparently has some flexibility! Too bad her parents don't anymore! Now, that I think about it, remember "tripod"...
Ellie's been testing her flexibility from very early on! They both recommended a consult with OT/PT to just take a look at her hips/feet. Sounds good to me! She also, with her prematurity, is a high risk for her vision and hearing, so they're going to follow up with that as well (which we already also have been through our pediatrician). Oh, and they're also going to have a nutrition consult to help me with Ellie's nutrition intake goals. I really liked Melissa and am looking forward to her coming back next week to see what the little Miss Ellie is up to next!
