Being A Survivor: Parent Story

In February 2013, I had the amazing opportunity to share our Team Gramkow story with The Wellness Network/ The Newborn Channel for their "Your NICU baby" project. This website channel would be (IS NOW) available to hospitals for NICU parents as a resource. It also includes educational files compiled from various organizations who support NICU families. NICU Helping Hands was a part of the project as well as Dr. Sue Hall (remember Ellie's neonatologist?). I had no idea how they would turn my hour of rambling into such a beautiful video. It so beautifully depicts a part of our journey to be an encouragement to those who follow us on the NICU road. Thank you The Wellness Network for creating this beautiful keepsake video, letting me have access to share it, and for your desire in serving NICU families in this way! 

Please pass along to any fellow NICU mamas who need a little encouragement today.

http://www.thenewbornchannelnow.com/

Delivering life-enhancing, wellness information to motivate patients to take action, aid hospitals in meeting accreditation and improve overall quality of health care.  Learn more at www.thewellnessnetwork.net.

Happy New Year 2015: HOPE

Happy New Year from Team Gramkow! A little late, but better now than never. It's a common theme I have when it comes to....oh, about everything!

We are SO blessed, and so excited to have more than a year in our Kansas home under our belt. It's felt a lot more like "home" now that we know more neighbors, Ellie started school, and we've funded home repair projects! ;)

We absolutely LOVE our home, and we are so excited to just stay and journey life here. We live near some of our best-est friends, and have certainly been blessed by many new friendships as well. Ben's commute to work is short, and Ellie's commute to school is even shorter. Our trek to see our family is less than 5 hours, and actually this Christmas season, we were able to see BOTH sides of the family! It was so much fun!

Ben is really enjoying his job at Garmin. He loves all things technical, and gets to do quite a bit there. He has great co-workers, and is enjoying learning new things and being challenged. I may or may not have gotten him a brain teaser desk calendar for his desk at work. I'm so proud of him! We are so blessed by the ways in which he provides for our family. Ben has been helping me teach Cubbies sometimes at Awana. It's been fun to co-teach with him, just thankful the curriculum is pretty basic! ;) Ben also is involved in Bible Study Fellowship, and that's been so great to see his relationship with the Lord deepen as he learns more about His truths through the Word. In case anyone is wondering, he still has his corny joke humor, which is now even more fun because the kids think he is hilarious! Ben does gets away to a game night every once in awhile with his fellow, analytically minded, maybe all engineer friends. He led the Gramkow garden project last year, and we're excited to see what will be added to the mix this year. We are just so thrilled we can keep plants alive outside here in this land.

Ellie is 6, going on 16, and in Kindergarten. She has absolutely LOVED school. She is often the teacher's helper, and even told me she reads and got to teach colors and numbers in English to a peer who speaks primarily Spanish in the home. She is reading so well these days, and just loves to teach anyone who will listen. She likes to read the Bible, and has no problem memorizing verses for Awana Sparks. She aspires to be an art teacher when she grows up. I think she is serious about this one. The girl has asked if we can have the art teacher over to play, and if not, requested to go play at her house. I have yet to meet this teacher, but I bet she'll be pleased to hear of her popularity in our house. We absolutely love Ellie's elementary school. The community is amazing already, and we've just started the school journey.  Ellie loves ALL things Elsa. Yes, we love Frozen in this house. She even got a hoop skirt Elsa dress from her aunt for Christmas. She has worn it I think 4 out of the last 6 days. Ellie had to be super brave as she got tubes in her ears again, and her tonsils and adenoids out. Thankfully she has recovered well, and is sleeping better and passed her hearing test! She has taken swim lessons all year, but now we're planning on switching to dance. Last June she was a starfish in the recital, The Little Mermaid, and it was so cute! She's our shy, sensitive, quiet child to most people, but it's been so fun to see the beautiful little girl she is becoming. She is compassionate, kind, creative and such a helper.

Beckett is 3, and acting like 3. For this, I am so thankful. SO thankful for the normal development, but BOY is he active. He is such a curious little guy, and gets into pretty much everything. He graduated from Infant Toddler Services from physical and speech therapy, right at age 3. I still think his fine motor skills are a little behind, but we'll get there. We practice lots of peeling stickers. His lungs still show Reactive Airway Disease/Asthma, but we are thankful as we think we have that managed with the right medicine combo. He has successfully had the past three colds not require an oral steroid. Win! He is a trooper as he can pretty much run the nebulizer himself, still twice a day. But again, we will take it. If it stays ahead of the respiratory illness causing distress, I will take it! He is so fun, and has just the cutest voice ever. He unfortunately lost his two front teeth in an accident with Grandma's stool, but it fortunately hasn't affected his speech much. He loves firetrucks, airplanes, trains and tunnels. He loves to copy what you say, and just makes us laugh all the time. His recent one was requesting to eat "flamingo juice" instead of mango juice. He has really started loving to imagine play by himself. And is currently on about lap 500 around our kitchen table leading Henry the train and train cars behind him around the kitchen table. He is in swimming lessons at Emler Swim School too, and although his breath control is at 10 seconds, we are still working on him tolerating floating on his back. He has loved going to Awana Puggles, and Mandy School. I am so glad I have more time at home with him. He is my little buddy! We are currently working on potty training, but honestly I'm not ready for my baby to grow up!

I continue to love many things and over-commit myself, but I just love people so much that I can't say no. :) This year has been a journey for me, as I have dealt with depression, anxiety, and post-traumatic stress. Not fun things, but likely the reason why I haven't blogged much. I am so thankful I'm in a different place now, and so thankful that I don't have to live in fear and anxiety. My kids are so amazing, and I am able to experience that joy. I was letting the depression steal that, even though many of you may never have known. However, I share because it's part of my journey as mama to Team Gramkow. And also that you are not alone!! There is HOPE. I am experiencing HOPE, and it can only get better from here. I just believe it to be. I reopened "Mandy School" watching a few kiddos in addition to my own this school year. It's been lots of fun pretending I'm a teacher. Beckett and Ellie absolutely LOVE having kiddos to play with. I constantly pray for protection over their health, but also know that sickness is inevitable. I've had to "let it go" which hasn't been easy since a majority of the past six years consisted of lockdown during cold and flu season! I'm so thankful that they are still my strong, brave kiddos! Have I mentioned that I'm so thankful for them?? ;) I also continue to lead the NICU Helping Hands Kansas - NICU Mom CONNECT (support group for grad NICU moms) each month in Topeka, and now will start every other month in Kansas City. It's been such a joy to become such close friends with these other brave NICU mamas. I look forward to it every month! I joined the Parent Teacher Club at Ellie's school. I also love hanging out with our Life Group mamas, and the hubs is really good about letting me get out for some adult conversation. A highlight of my year was a recent trip to Manhattan with my grad school girlfriends. So thankful we still can keep in touch, thanks to the app, Voxer! :) I am also LOVING being closer to my family in Iowa, and spending more time with them! Especially my sister in Minnesota. It's been SO fun to spend more time with mom and dad too since they have retired. I still teach Cubbies at Awana, and sub for Emler Swim school during the school year. I plan to get back to teaching those water babies more often in the Summer months! I also have my on-the-side Rodan + Fields Dermatologists Skin care business. If you are in need of skin care, let me know! :) My schedule has finally allowed me to attend Bible Study Fellowship too during the week. It's been so awesome do the same study as Ben. We are going through the life of Moses. The way the curriculum is set up is great accountability.  It kind of feels like the good ol' days when we would go to the library in college, sit down to study side-by-side, and do homework. :) It has been very life-giving for our whole family.

We don't know what the future holds for our family, but we know WHO holds tomorrow. There is such JOY and we have HOPE in that fact! We have opened our hearts to expanding our family possibly through adoption, which is exciting and scary all at the same time. So as we have learned studying the life of Moses, we are waiting to "move" as the Lord commanded. If you think of us, please pray for wisdom for us. And while we think we know His plan, I'm sure there is a greater, more amazing plan that we can't even imagine. But for now. We give thanks. We take one day at a time. No it's not just the number one advice I give to NICU parents. I live it.
We celebrate.
One day at a a time.
We HOPE.
One day at a time.

Many blessings to you and your family as the New Year begins! We are so thankful for ALL OF YOU! "May the God of HOPE fill you with all JOY and PEACE as you trust in Him, so that you may overflow with HOPE by the power of the Holy Spirit." Romans 15:13

Love,
Mandy for Team Gramkow

Dear NICU Nurse. You were the first to see me become a mother...

Dear Team Gramkow NICU Nurses, 

As we celebrate YOU on Neonatal Nurses Day, Sept. 15, I can't help but think you truly deserve more than just one day a year. There aren't enough words to describe my sincerest thanks for taking such great care of my tiny Ellie (yay for SV NICU nurses) and Beckett (yay for Harris Methodist NICU nurses) when they needed you most. Thank you for getting your nursing education. Thank you for continuing on to be certified to work in the NICU. Thank you for taking the stress-filled risk to work with such fragile beginnings to life. Thank you for your tender touch. Thank you for your attention to detail. Thank you for knowing my babies when sickness was coming on. Thank you for calling in on your off days because you were worried how that day would go with out you there. Thank you for celebrating the little things with us. Thank you for all the sweet keepsake signs that you'd post when mama was away. Thank you for cuddling when mom and dad couldn't be there. Thank you for loving on not only our preemie babies, but loving our whole family so well. Team Gramkow is forever thankful for YOU!

You see. You were the first to see me become a mother. You saw the scared look on my tear-filled, puffy-eyed face as my expectations of how I would enter motherhood were shattered. I thought it was all a bad dream. You saw how I was in denial, and that I didn't even know how to feel joy. You took care of my sweet Ellie, my fragile baby while I was in the preemie mama daze that whole first week. 

You educated and explained each and every wire, tube and monitor that was hooked up to her as she laid in the isolette. To you, this was an everyday sight, but you never let me know that. You knew this NICU world was a shock to me. You patiently waited as I transitioned from denial to bravery. You educated me on pumping, and always encouraged and celebrated any amount of liquid gold I produced. 

You educated me on what was best for my baby...to hold her, to kangaroo care, to help with "cares," to recognize her "I'm overstimulated" signs, to celebrate even things like smears and low residuals. You helped me practice her physical therapy. (that she was supposed to still be practicing in the womb) 

Thank you being willing to answer my million questions. (shout out to Ellen and Dr.Hall too!) Thank you for journeying with us all 71 days. Thank you for celebrating and crying with us as we finally went home from the NICU. You were our first NICU family, and we are forever grateful.

And then, we got to do it again. Beckett came at 25 weeks, and we now knew the lingo. We knew the NICU world. But we didn't know if that would make it easier or harder. 

You see. You were the first to see me become a mother to our second child, another preemie. I didn't want to see you NICU nurses this time around. You were the first to witness me see him for the first time, asking which isolette was mine. 

You saw me bawl and sob, and scream "not again." You explained his medical status to me over and over again. I asked the same questions over and over again, but you never made me feel stupid. You constantly reminded me that he was different than his sister, born almost 3 weeks earlier, and a boy. (Yes, insert whimpy white boy lungs...I knew about it.) You were patient with my million questions including why things were different as far as feeding philosophy and advanced research from just 3 years ago. 

You sat with me in his individual "airplanes" room, even though I knew it drove you crazy having a 1:1 assignment. You sat with me in the dark when he was having a horrible desatting day, and that was the only trick to calm him. You checked his bowel sounds every paranoid time I saw his tummy looked distended. (Yes, I asked the DRG this all the time too) 

You were there when he got really sick, and knew to call the NP and doc right away. You were there not giving up on him when you had to bag him at 3 am in the morning. You not only loved on my sweet boy, but were so compassionate and kind to me. You listened to me cry, and try and figure out why this happened again. You could tell when the mommy guilt was in full force, and reminded me that this wasn't my fault...even though it is a hard one to believe deep down. You loved on my boy extra because I couldn't be there all the time with having big sister, Ellie to care for too. But you did save baths for us. 

You always came in to tell me the K-State Football scores to help things feel a little bit normal, and like home. You wrote letters to mom in Beckett's journal telling me how the night went. I still love reading these. You brought my family a meal after your long shift with my boy because I had called saying our house was broken into. I know you prayed for our family. You celebrated and cried with us when we finally got to take him home just in time for Christmas. You were our Texas NICU family, for a long 88 days, and we are forever grateful.

You know what gift I can give you today in your honor? A reminder that what you do, is TOTALLY WORTH IT! You work so hard to nurture these NICU babies so they might have the best possible outcome. It started with you! And then, there IS joy down the road. Just look at my two miracles. We were SO blessed to know each and every one of you who cared for our Sweet Ellie and Sweet Beckett. 

Our 27w6d, Ellie Jo, who just turned 6, is in Kindergarten and is reading above average! 

Our 25 weeker, Beckett Thomas, who will be three next week, just graduated from ALL therapies! He is equivalent to development along with peers his age...gross motor, fine motor, adaptive, cognitive, social-emotional, and speech!    

We love you all! Team Gramkow will always be your #1 fans!