Nov
27
2011

Two years old… where did the time go?

WHAT?  My son is two today?  You must have me mistaken with another mom, didn’t he just get here?  Wasn’t I just in the NICU?  It seems the mommy brain that I’ve been experiencing turned into mommy amnesia, my how the time has flown by.  I say that, but there were times where it seemed to drag…and that of course is even after the NICU!!

Maybe I’m not going to win parent of the year in any category, but I think we did pretty well.  Going from the 18 week pregnancy diagnosis of ventriculomegaly, hydrocephalus and “his cerebellum is smaller than normal” talk to his surprise arrival at 29 weeks.  Then there was the rare brain malformation diagnosis (Rhombencephalosynapsis) at 10 months, followed quickly by my leaving full time military service to stay home with him and hope that one day he would even sit up on his own.  Luckily I had just started It’s a Preemie Thing as a side business as some of my fellow preemie parents and I discussed the need for some humor in our lives.

Ahh the joys of the first year of being a mom!  At first it didn’t really phase me that Spencer was not so “typical” until all his little buddies were sitting up, crawling around and then walking…and he still couldn’t get into the sitting position by himself.  But then I watched a friends daughter for 3 days and realized how much extra work Spencer was.

I didn’t have to set her down next to something for her to hold on to, she could stand on her own.  She could walk to the door, and the car on her own.  I hadn’t realized how much I spent near Spencer so he wouldn’t topple over and slam his head into yet another object.  Luckily I have an amazing neighbor (Staci) who has a 26 weeker who has CP, Nick.  Staci has been through it all, and without any preemie support when her son was younger.  Nick is now 11 years old and a rock star, but is still using a walker, very smart, funny and is one beautiful young man.  He even attends soccer camp each summer!

Spencer using his walker!

When Spencer got his walker at 16 months, Nick actually taught Spencer how to make turns and Spencer would follow Nick everywhere.  It was pretty dang cute seeing the mini walker following the big walker down the hall.  And of course, then I felt guilty complaining to Staci for support, but she understood the struggles and was there to support me and listen to my vents.   We even discussed over a glass of wine just a few days ago, on Black Friday how hard it was for me to tell her when Spencer let go of his walker and took his first steps on his own (I’m jumping the gun, that will come later in my update).  I wanted to share our joys, but I knew it would be hard for her, even though I knew she would never show a bit of sadness, only joy for our triumph.  It is a fine line we sometimes have to walk, even with friends when it comes to the fragile world of preemies.

On 30 April (the day of our local March for Babies with the March of Dimes) we had our first It’s a Preemie Thing team and the rains stopped long enough for us to complete the walk.  Then we came home to warm up and relax.  Spencer was now 17 months old and had been using his walker for a month.  My guess is all the other preemies that surrounded Spencer that day gave him a pep talk…as that evening, Spencer got into the sitting position on his own for the first time AND crawled on all fours.  Show off!  But man, were we proud…and I cried a lot.  Yes, he had been walking with a walker for a month and couldn’t sit up on his own or crawl…so things were starting to happen!

So now he’s sitting up on his own, crawling on all fours and cruising around the house like a champ in his walker and I haven’t even done damage by feeding him so many different types of food, and he hasn’t died yet by eating something I may have not cut up small enough.  Because come on, you all know we think we’re really going to do something wrong as a parent and are relieved at the end of each day we have not horribly screwed up our child…yet.

It’s amazing how many people will say things without realizing that while you may look calm on the outside you are jumping up and down on the inside screaming “ARE YOU SERIOUS?” maybe even adding an “F” word in the mix there.  Like when Spencer was in the NICU on a vent, not breathing on his own at all with some crazy virus and they didn’t know what it was and a fellow Army officer informed me “You think this is hard, wait until they hit two!”  Did you REALLY just say that to me?  I HOPE he hits two, heck, I was hoping he’d be alive that time next week, the terrible twos…bring them on!  And guess what…now that he’s two, I still feel the same way!!  And for those with children running around and Spencer wasn’t even crawling yet I heard many times “You don’t want them to walk, then you have to chase them everywhere!”  Ummmm…yes, yes I do want him to walk and now…I LOVE chasing him everywhere…faster Spencer…FASTER!!

Which brings me to another date I will never forget…9 AUG 2011.  Spencer was walking across the kitchen in his walker, he stopped, smiled at me, let go and took 3 AMAZING wobbly steps before smashing into the ground.  Could it have been my screaming and jumping up that caused the crash?  Potentially…but for the first time, my son walked on his own at 21 months and he hasn’t slowed down since.  Due to the RS he walks like he’s still just learning or what many of the RS parents call the “drunken gait.”  Should I dare tell them that’s the beer I’m giving him in hopes that he one day sleeps through the night?  YES…I am in fact joking, about the beer, not for the hopes of him sleeping through the night.

But for now, I’m STILL enjoying being a first time mom, I try and keep the humor in our lives as sometimes that’s the best way I cope.  Despite how crazy it sounds, I do appreciate having a preemie as I’ve not taken anything for granted, I really appreciate every little thing that Spencer does (ok…MINUS the not sleeping through the night yet) and it’s changed my outlook at being a parent.  I’ve met some amazing people I would never have met had this not happened, and then, well, It’s a Preemie Thing would have had to be someone else’s idea!! 😉

So today, I am a proud mother to a TWO year old, born 11 weeks early, have been through some crazy times, lots of doctor visits, I’ve learned a whole new vocabulary that gave the Army acronyms a run for their money and I have to say…I’m happy to be here.  He knows over 150 words in sign language and is now starting to talk and sign the words at the same time, he walks, tried and enjoyed both Indian and German food this past week, LOVES baths and showers and is one of the sweetest, most gentle little two year old I’ve been around.  So thank you for sharing my journey through It’s a Preemie Thing, and sharing so many of your journeys!  And I’m sorry Spencer, that when you become a teenager you will realize that your life up to a certain point is posted on the web.  But until then, Happy Birthday Spencer, your mom and dad love you VERY much!

6 Comments + Add Comment

  • My LO is 20mo (27w, 4wIUGR, 1lb 4oz, 12″, + Tetrology of Falot (perfect storm of heart conditions), 5.5mo NICU) and I TOTALLY get it! We are getting the “be glad you don’t have to chase him yet” thing too. He just got a walker last week and is LOVING it. His confidence has exploded.. He crawled (army man style) into the kitchen the other day and dumped the trash all over the floor, I happily cleaned it up. He hadn’t gone that far away from me and explored things before.
    Love IAPT!
    I have some NICU humor on my blog under the NICU tab (froginstitches.blogspot.com) but can’t post a direct link since I’m on my phone.
    Keep up the awesome work! He is getting some of your shirts for Christmas 🙂

  • Julie,
    I loved reading this!! Although reading it wasn’t a great idea reading it at work! I cried like a baby!! Happy 2nd Birthday Spencer and Happy 2 years Mommy and Daddy 🙂

  • My son Ty was born at 30 weeks 3 w IUGR on December 13 2009, a month on the vent,73 day NICU stay and has Chronic Lung Disease and has been oxygen dependent since. He is an awesome little guy, a handful when he is feeling good but this Momma doesnt mind 🙂 He has had several bouts of pneumonia and most recently a super virus that attacked his lungs, eyes, ears, throat and skin but fortunately once on a super IM antibiotic he is on the mend but have had to increase his O2’s. Was finally able to receive his Synagis shot against RSV. Happy Birthday to your little man Spencer as Ty celebrates his second Birthday on Tuesday of next week…We have ten children Ty being number ten and our last( I made sure of that 🙂 we have 5 natural and 5 adopted….Ty was our surprise….had been 17 years since my last bio….I am 45 with an age range from 25 years to Ty at 2…Congrats to all the tough Mommies and Daddies who are at their babies side in the NICU and those still at their side at home.

  • Happy Birthday to your little guy! I’m so happy I found this site. I’m Mom to a 30 week preemie, turning 2 in March and still not crawling or walking on his own. I couldn’t agree more re: the stupid things people say to parents of preemies. I would give anything for Leo to be running around. I’m confident we’ll get there (he’s rolling all over town, walks if you hold his hand and crawls if you help him out on all fours) but it sure is tough to maintain perspective when everyone you know has a healthy, full term kid doing all the “normal” things. Thank you for writing! Keep it up.

  • Julie…Did anyone tell you…you are awesome? Wow! How kind of you to share your successes with and about Spencer so that others might also open up and share their thoughts, concerns, fears, joys for their own preemies! I was blessed…four full term daughters; since then, seven “grands” of which three were preemies, two touch-and-go life preemies…tho in many ways all children share the elusiveness of life and parents share the prayers of living. Kudos to you for allowing the “unsaid” and “certainly felt” words and emotions to be explored. God puts each of us on earth for a reason…I so believe that…Bless Spencer…as he highlighted yours!

  • I just wanted to say thanks for posting this all of your experiences. My son is now 5 and born only two months early and I had preeclampsia too and had the same feelings of dying and everything like you. Remembering that day when Peanut came into the world, makes mothers day that much more important to me. And knowing that be both survived. Thank you for helping with the memories. I wish your company would have been around then, because it was hard to find him anything to wear.

    Thank you so much for you story… it brought back the memories and the fighting we did! Peanut was fine, just small. I took all the bad stuff and had all the problems for many months after. But as long as he was fine, is all that mattered!

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