Hand to Hold's Official Blog: Written by Parents for Parents

Back to the Battlefield of Prematurity

Tenley with AngieToday, I am leaving Preemie Babies 101 behind. I am reluctantly packing my bags and heading out on a road that I know nothing about, yet everything about. I am heading back into the battlefield of prematurity.

While my daughter is 3-1/2 and you’d think that her prematurity is behind her, you’d soon realize there was something different about her. You’d see her blank stares, hear her repetitive language, and cringe when she started head banging. You’d wonder why my arms were black and blue, my hair disheveled, and my gaze averted.

You see, we’re just over here surviving. Each day walking the egg-shell covered pathway that winds before us. Each day not knowing what, how, or when the next meltdown will occur. Each day counting down the hours – minutes – until relief walks through the door and I’m no longer alone to handle the tiny, but strong, little tornado I’ve grown to love – and fear.

Angie with B&TShe’s the sweetest little thing, until she’s not. Anyone looking in from the outside might think that she’s just a bad kid – or that I’m a bad parent. They might not realize she was born at 27 weeks, one of the two of my triplets to survive. Or that she had level 3 brain bleeds, has had 6 brain surgeries, has ongoing seizures that we’re still working to control, and who is as spitfire as they come, having willed herself into this world from day 1. They might not realize that she sends up red flag after red flag for autism, has been in some sort of therapy from the day she came home, is borderline not able to attend a normal preschool, and while bubbly as can be and a memory I’d trade my chocolate for, can’t verbalize her feelings, and in turn, acts out in increasingly lengthy bouts of aggression.

The days are long here. There are no more “nap breaks.” No more moments of peace. No more mommy and daddy evenings. She must have one of us with her at all times, and by the time I sneak out after getting her to sleep, my day – my time to work, rest, relax, socialize, whatever – exists between 9 p.m. and however long I can stay awake.

And while I still like to think of myself as superwoman – and many of my friends would say I always seem to be able to juggle so much – I can’t. Not anymore.

Because she needs me more. More than I need my naps, my girl time, my “giving back” by working time. She needs me more than Preemie Babies 101 needs me. And the truth is, these past 3-1/2 years and all the things we’ve experienced because of her prematurity… we never left the battlefield. Unfortunately, some parents don’t. Some kids don’t.

Which is why it’s even more important that I say this:

I can no longer help other parents walk this journey in the way that I want to–to give it the attention it deserves. I am headed back to where I thought was long gone – the battlefield of prematurity. The fellow NICU mama who will be taking the reigns of Preemie Babies 101 is Leigh Ann Torres, and you’ll enjoy getting to know her better when her first post goes live on Monday. I’m confident that she’ll take care of you, this blog and community because it is such a lifeline to so many. Please welcome her with open arms to Preemie Babies 101. I’ve enjoyed my time here, and I am grateful to have been given the opportunity to help make this community what it is today. I hope I’ve made at least a small difference.

Angie Bickford About Angie Bickford

Angela “Angie” Bickford (TX) is the mother of triplets born just shy of 28 weeks and weighing only 2lbs. 5oz. each. Sadly, baby A only lived for 49 days, but she and her husband make it their mission to celebrate his short life by helping others who have lost children. She spent 111 days total in the NICU, and between her three children, has experienced NEC, brain bleeds and hydrocephalus, reflux/GERD, sensory issues, daily therapies, and several trips back to the hospital. She is a speaker, published author, and blogger. On her personal blog, she talks about loss, faith and her obsession with cupcakes. Connect with her on Twitter, Facebook, Google+, and Pinterest or via email.

Comments

  1. Thank you thank you thank you! Your service has been tremendous. Not only have I enjoyed checking this blog every day for inspiration to help me handle my premature twins, but I share this site with friends, family, the NICU nurses and various therapists we work with.
    Thank you again. May you always find strength as you go forward.

  2. Well said. You will be missed.

  3. I’m so proud of you, Angie! It takes courage to step back, but it sounds like you are doing the right thing for your family. <3

    • Thank you, Melissa. It was a tough decision – I love working in general, but to add helping others and writing as part of that? You’re right though… it’s the right thing, and I know I won’t regret it!

  4. I am sorry to read about how difficult things are at home right now, but I’m so appreciative of the time you shared with us. Thank you for everything. I’ll keep all of you in my thoughts, especially your little girl!

  5. I will be keeping you and your family in my thoughts and prayers. Sending hugs to all of you.

  6. Kimberly Burke says:

    Angie-thank you so much for all you have done! You, and your beautiful children, are warriors and will forever be. You are an inspiration and I pray things get better very soon. I feel so fortunate to have found this website. My identical twin daughters were born at 28 weeks exactly (1.8lbs each) and I travel along a similar, but not exactly same path with you my friend. You have made a difference and thank you again.

    • Thank you for sharing, Kimberly. I’m so glad you’re found support through the blog. I hope your daughters are doing well – I know 28 weeks is a bit scary. Hugs!

  7. Man oh man. As I was reading your description of your daughter and her behaviour, it reminded me of what my mom went through with my brother, who has autism.

    My dad was always researching alternative treatments for autism, and when my brother was in his late 20s, my dad discovered Neurofeedback therapy, which works on helping to get your brainwaves synchronized.

    Humans have 5 kinds of brainwaves, and in a “neuro-typical” brain, the 5 brainwaves are in sync, kind of like waves gently rolling in to the shore. For someone with autism, the brainwaves are out of sync, kind of like a storm at sea, crashing about. The Neurofeedback helps get the brainwaves in synch.

    Children as young as 3 can do Neurofeedback.

    My brother presented with many of the classic autism red flags. Twirling, extremely delayed language, no concept of self, an almost maniacal need for routine, hair trigger episodes of rage. And a razor sharp memory like your daughter has, too. Not all the traits of autism are obstacles. 🙂

    Anyways, I really believed that my brother was going to live with my parents until they were gone, and then he would come to live with me. Neurofeedback proved me wrong! My brother has been married to his neuro-typical wife for almost 11 years, they have a 6 year old daughter and their own home.

    I know this is a sample size of one, but I firmly believe in Neurofeedback. It doesn’t hurt and it absolutely, without a shadow of a doubt, helped my brother to manage his autism.

    I often wonder how different my brother’s life would have been if this treatment had been available when he was a kid.

    Please feel free to contact me, I am happy to share more details about neuro.

    I wish you the best with your daughter.

    • Thank you for sharing – I love hearing other ideas that have worked! I’m big on being an advocate for her and researching all sorts of things, and I’ve just started looking into neurofeedback as an option. Not sure with her shunt if she qualifies, but I’m encouraged by your story! <3

  8. Sending warm thoughts and strength to you! My son was born at 32 weeks in April, and this community quickly helped me process, cope and find comfort during those long weeks in the NICU when everything seemed so overwhelming, painful and frightening. Best wishes, Angie.

    • I’m so glad you’ve found help and support here, Meg! That makes my heart very happy. I hope your son is doing well now, and that you’re adjusting. And who knows, maybe you can write for PB101 someday!

  9. Angie, What a beautiful, heartfelt good-bye post. You have done an amazing job and will be missed. From one NICU warrior to another, please remember you are not alone on the battlefield! -Kathy

  10. Angie,
    My heart goes out to you, hoping you have positivity and good days ahead of you. Thank you for taking the time to share your story, thank you for caring about the community enough to let us know that you were leaving, and even more for being willing to share your story and the vulnerability that prematurity has created for you and your family. I’m sure I’m not alone in hoping that you’ll someday at least keep us updated as you make progress along your journey. I hope you’ll continue to feel the love from this community that you’ve served so beautifully for so long. We’ll all be thinking of you!

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