In this episode of the Run Lift Mom Podcast, we talk Reflections from a NICU Mom with Kate O’Keefe of Knits for NICUs
3:00 personal background 4:00 pregnancy with Barrett 7:00 blood transfusions during pregnancy 11:30 when your Doctors google start your bedside 13:00 does he have enough fight to be saved? 15:00 NICU “lows”, being patient enough for development 18:00 6 month stay in the NICU 19:30 biggest misconception about NICU parents 21:00 life as the parent of a 3 year old NICU graduate 22:00 Knits fot NICUs 24:00 why the program is one for one 26:00 importance of consistency, fitness as a coping technique 28:00 self talk 29:00 rapid fire
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RLM: What would you say to a woman in that NICU journey?
Kate: It is tough to know what to say, even being a mom who lived it for nearly a year, it is so hard to know what to say that will help a mom going through the NICU experience because no two NICU babies are the same. They experience their milestones differently, at different times and you never know when you are in the clear, even after you are home. I held my breath for months and months after we brought Barrett home, I still feel pieces of my heart that believe that he is still in danger of rare and devastating health complication and somehow I will be back in that hospital scenario.
The advice I would give that momma is, go on a walk, play some music and allow yourself to feel the highs and lows. Allow the pain to surface when you are in a safe spot. Exercise, work up a sweat and get those endorphins pumping!
It is so important to invest in yourself so that you can work through some of those emotions, the physical and emotional toll will take you down if you ignore it. I speak from experience, I had a very very very hard time with my emotions. I had so much PTSD and still do when I remember the days of watching my baby suffer next to me.
The best thing I did for myself was invest in my husband when I could, invest in Lydia when we could get time together and invest in myself when I could justify it.
Since I do not believe there is anything you can say to make a NICU mom feel at ease, I do believe that this is a season where more than ever these women need to be surrounded by resources. They need to have a meal train that just does not stop. They need their kids taken to the park so they can cry in peace. They need gas cards so they can drive back and forth to their baby without worrying about having to pay bills the next day.
They need a gift card for a massage, a hair cut, their nails done. These are the things we need but feel guilty about doing and we feel too sad to cook, we are too sad to play pretend with our kids and so we need someone to help build memories, fun moments and self care. Help us in those ways because we do not want false hope, we do not need sympathy or to be in too many social situations. Most of all, unless offered, we do not want to give health updates, it is so hard to talk about and it’s not an easy answer, so do not ask.
By the time I realize that I am tired I am more than tired, I am so much more than exhausted. I can go for a very long time before I realise that I am tired. I am working on this, but it is such a deep deep pattern that I have repeated most of my life. Even on a normal day as a mom I see myself cramming more and more into my days and the days that we take it easy I find myself
RLM: Tell us your background
Kate: I come from two amazing parents who are still together and seem to love each other more every year and are such an inspiration. I have two older sisters and a little brother. I say little but he is a daddy and has an amazing lady in his life so, not the 7 year old I think of in my mind I guess. I love my family, they are great cooks, life of the party, love music and laughter and we are really lucky to have each other.
When I met Renex a little more than 10 years ago, he really did shake up things for me. I just remember looking at him on our first date and being mesmerized by him… Now here we are, we have been here in NC for almost 6 years and these experiences I have had since moving here has radically changed me as a woman, wife, mother, a believer and a friend. We moved here with a boxer ( our first dog) and a great dane ( adopted dog) and our 10 month old baby girl.
I got my undergraduate at UCCS in Communications with a minor in political science. I wanted to go to law school, but that never happened. Reality hit me and I realized how much debt I was in, so I got a management job and never went back to school. Working in retail taught me a lot about conflict management, working hard for something and seeing through tough projects and managing people to accomplish tasks. I have had a lot of different jobs throughout the years but retail management and customer service is what I did in Colorado before moving here. When I moved to Ft. Bragg, I took a chance on managing a yoga studio and teaching, but the owner sold the studio quickly and that fizzled fast so I went back to retail. Retail was killing me, it really was, so I got the guts to try something new, Real Estate. I had never been so proud of myself, I really wanted to be great. Barrett had other plans.
I got pregnant with Barrett in my first year of Real Estate and he just took the wind out of my sails. My pregnancy with Barrett was very short, but for me, every week felt like a year. At 10 weeks I started bleeding, more and more until I started passing clots and I was convinced I was having a miscarriage. When I went to the doctor I was told that I had a subchorionic hemorrhage, but that it would likely clot and it would be okay. There is nothing they can do to
help that kind of issue so they sent me home and said to just continue living life and see what happened. Well, I keep bleeding and going in to the ER and being sent home for a month until I was finally taken seriously bc I was actually critically low on blood. So I was admitted and given a blood transfusion with hopes that I would recover quickly. That did not happen. I bled more, a lot more and my blood clot inside of me was growing at a crazy rate. So not only did I not have enough blood but the blood clot was growing and taking up space and crowding Barrett.
RLM: What are some assumptions people make about NICU babies, parents and were you ever the recipient of any?
Kate: For the NICU babies I think the big misconception is that they are frail and that they are broken. They are the complete opposite, they are so strong and they have already proven their strength from such an early start that they are tougher than you can imagine. They endure so much pain and uncomfort before they even have pain receptors so they experience pain so differently from the get go.
For the NICU moms, I think all these phrases of “ Super mom” “NICU warriors” and telling us we are the strongest moms and we are courageous is also the opposite. Yes we are stepping up to the plate and doing the daily work of showing up for our family and our babies, but please stop assuming that we are these tough women.
We are just doing what any other mom would do and trying not to fail. When people who say these phrases to me it just made me feel inadequate, made me feel like a fraud because I knew the mental struggle and the pain I faced, but because people kept calling me strong and super mom I felt like well that is what I have to be, I can’t grieve because I am too busy rising to the challenge to meet all these expectations people have of me .
RLM: What is life like today? Challenges of therapy?
Kate: Life today is good. We are extremely fortunate that Barrett has beat a lot of the odds and he is all things considered, very healthy.
He has a great team of therapists and a great doctor, nutritionist and for his first 3 .5 years he had nursing at home to help with his daily feeds and tasks.
Barrett has challenges though, he does have a lot of therapy in his life. He has speech therapy at Duke once a week because of his paralyzed vocal cord ( due to his heart surgery) . He gets OT and PT and speech therapy at his Special Education PRe K , he has regular check ins with nutrition and neurotology and his eye appointments are ramping up too. Last year was when I realized I just could not continue Real Estate if I wanted Barrett to be successful. It is not just
attending these therapy sessions, it is implementing them on a daily basis and trying to working them into fun activities at home. It is all consuming and the nursing we had could never really step up to the plate. So I quit a job we really needed to make ends meet and I just focused on Barrett and really that is where we still are today.
His vocal chords really affect the way he speaks and makes him hard to understand, but the biggest issue is that he has a very hard time swallowing, which is part of the reason Barrett was in the NICU for those last long months of our 6 month stay. The doctors fortunately decided to give him a M-Key button so he could do tube feeds and that really was our game changer.
Being able to feed Barrett with his feed tube gave him the leg up he needed while he grew. It kept him hydrated when he had intestinal issues, it helped us give him his medicine when he was sick and fussy and it helped him grow despite his issues with eating. We are so thankful for the fact that he respects his button, he never pulls on it and just sits with it, no problem. It is his secret weapon for sure.
My biggest challenge with therapy was the fact that it is never ending, I will admit, I found that defeating, again with the self talk, this isnt working, we are never going to get there, blah blah.. I hate to say it, but that was my self talk, until one day I just said, “maybe we take a break!”
Almost every therapist we had say YES, take a break, practice what you know and come back and lets see where he is at and go from there and that was revitalizing for me. To know that this is lifestyle for us, with seasons on and off and we can do that so that he continues to grow
So no-a-days, his days are to go to pre-k, come home and have a tub feed, take an hour, then play, pick up sister, play/ therapy and then another tube feed, an hour and then bedtime routine. Also, every 30 mins, we go potty and potty training has been a longer, kind of off and on process for him but we are getting there at his pace.
We are on Barrett time, that is what we say around here, we do not put pressure on him to get things when we think he should and that allows me to relax and allows him to build self esteem without feeling like hes behind, because he isnt he is making his own story!
RLM: How was Knits for NICUS put in your heart?
Kate: Well, I know now, that I look back at myself years ago that I needed to do something that kept me busy but was not about Barrett. I needed something to help me turn inward and start to heal my heart, my mind and really just give back in a positive way.
From the very first blanket I knitted I knew that this was something that I could do to just sit and escape from the pressures of life and it was not long after my first blanket that I was reminded of my mom and the blankets she makes for all her grandkids and I knew that this was such a blessing to receive and I thought this is something I can do that is positive for other moms who maybe do not have someone in their life who would do this for them.
My mom is an amazing prayer warrior, she would pray and knit and send blankets that I knew carried blessings for all of us. I wanted to continue that. I tell her when I am making a blanket, in fact I tell my whole family and we instantly start praying for them the same way we prayed for Barrett and we fully believe we see miracles for these babies.
I want to touch as many lives as I can, because I do not have the answers does not mean I cannot make a difference, God is in control, thats the comfort.
“ For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
Hope is scary without faith, it feels empty, but God makes hope feel more tangible.
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