Scars

Sweet feet....


Was thinking today: Ayla has been home for 4 months....really? It's so incredible! I recall sitting with her in the NICU thinking we'd never get out....yet we escaped! She was so small, impossibly so- and now she is big and chubby and freaking adorable! She was always adorable though....

Life has certainly changed for us- and we wouldn't have it any other way. Ayla and Zoey brought a unique perspective into our lives, a glimpse into the eternities and softer hearts. We easily cry with parents of struggling children and have a deeper love for all of God's children. We've been constantly humbled by the kindness of family, neighbors, friends and strangers. It's been a lesson in humility and faith. It's far easier being on the giving rather than receiving end. Through it all, we are constantly amazed with Ayla and healing power of prayer and the Priesthood.

As she grows we notice 'survival wounds' coming to light; scars on her hands and feet from numerous IV's and needle draws, marks on her legs (one in a perfect circle) from the C02 Sensors and oximeters, surgery scars on her sides and stomach from procedures and other scars that bear testament to her toughness. I'd like to kiss them away, rub them off with a gentle touch.....but those scars are part of her. They remind us of her strength and how special she is. As she grows we will teach her about those marks and how proud we are of her- how God carried her through and comforted her.

We love being with Ayla and she has brought our family closer together. We are grateful she will not remember her time inside the NICU, we are grateful she doesn't know she's different and we don't care. Those who do not know Ayla's story or anything about micro-babies can be quick to judge- and since returning to work I have received many an "advice" from good-meaning people who just don't understand. I get it and I rarely become angry unless confronted with ignorant stupidity...and there has been some! But for the most part, it's been good. I find that I like educating people regarding Ayla- there are so many fascinations!

We know Ayla will become perfect as she continues to grow and develop- she has a special purpose here....she is already perfect....more so than any of us! Now if we could only translate what she's been trying to tell us- I am sure she could blow our minds!

Always Looking....

Questions, questions.....Since Ayla & Zoey's birth and the multiple complications they experienced (and Ayla continues) I have been researching the "why's". Just that kinda gal- want to know 'why' and 'what-to-do' and 'how-to-improve'. I believe every parent to a baby with complications or special needs does this- it's our inherent nature to search for a solution, to "fix it". We never stop hoping and looking and of course, hindsight is always best, right?

Micro-preemie babies are modern miracles and there are many long-term unknowns to these babies as they grow into adulthood. I like to read and follow any research and leads into studies of very premature babies, it's fascinating. My browser is full of various website studies saved in a favorites folders.....The scientific information found is mainly still 'in progress' or 'inconclusive' but always interesting and sometimes, scary. The March of Dimes is a fabulous organization to respect and love- they provide the funding for these studies into premature births.

I may drive myself into the loony bin thinking so, but nonetheless, the nagging "why's" seem to lurk and drive me to research. Personality glitch? Probably! It makes me crazy that I just don't know "why": Why were Ayla & Zoey born early? Why did they have brain and lung bleeds? Why was Zoey much worse than Ayla? What causes this or that complication? Why? Why? I feel like a three-year old always asking, "Why?". Ha!

There are no answers to most of the questions- at least answers I'll find on earth. So patience has never been a strong virtue of mine...I'm learning....I have an incredible husband whose example I look towards.

All of that rambling to share an article on Neonate Infant Pain;

http://www.physorg.com/news173105138.html

Hey- it's my blog and I can ramble as I will......

Respite Care

We've been waiting several months to become approved for Respite Care for little Ayla- at first attempt we were declined, then later approved for a home care provider and not an RN. Which is great, but a mystery why Medicaid has been difficult to work with...oh wait, it's Medicaid that's why (silly me)! Our doctor was surprised to learn that Ayla did not qualify for Nursing Care and limited hours as there are several of her other babies less critical than Ayla who qualify for 30+ per week of in-home RN Care. It's been a rather challenging process and we are grateful to have what we have...albeit only temporarily.

In-Home Care will allow Ryan to return to his normal working schedule and allow me to put in a few more working hours (to my managers delight). As this in-home care is only approved for 1 year we are going to take advantage while we can!

Food Shows and "Just at Home"

Getting displays ready for the Food Show


So much to do- so little time!!!

Julie & I in the Simplot Booth

We had 10 booths at the show- whew!

The end of June was a blessed time for us- it's the time Ayla came home! Since Ayla has been home, Ryan and I have been working 'shifts' so one of us is always home with the tinker-bean. It's been great! I usually work from 2pm-6pm though it's been difficult going from a full-time to part-time position and still trying to maintain the same workload. Needless to say, it's been a juggle and I work a lot from home for "free". I know, I'm a sucker!! My employer is lucky I was raised with a good work ethic.....

October is one of the busiest times of the year for work as a Food Broker- it's Food Show Season! It's busy and stressing: I call it, "Organized Chaos". Most people that I work with at the Distributor level know what our family has been going through since February and some haven't. One sales associate with the distributor that I work with made the comment to me that he doesn't see as much of me as usual....of course! I have been at home taking care of Ayla. Here's a quick recap of our conversation,

"Hey Heidi- haven't seen you around much- what have you been doing?"

"I had twins in February and been a little busy. I'm only working part-time so you don't see me as often anymore."

"That's right, I remember that you had girls. So you work a few hours a day?"

"Yep."

"What hours are you working?"

"I work 2-6pm."

"So you're just at work a few hours and mostly at home? Must be nice!"

"Oh I'm a busy gal- having a special baby requires more work than usual."

"Really? Well, you're 'just at home' the majority of the day- how hard can that be?"

This is the point that it gets interesting.....and anybody who knows me knows that sarcastic comments like that don't go unnoticed.....

"You have children, right?"

"Yes, a boy who is six."

"He was probably born at full term with no complications, right? Probably a healthy baby?"

"Yeah, he's great!"

"Do you know what a micro-preemie baby is?"

"Yeah, I know lots of people who have preemies!"

"Not preemies, a Micro-Preemie meaning a baby who's born under 28 weeks and really small."

"Oh- so you stay at home just because you had a micro-preemie baby?"

I'm trying to be patient at this point because most people honestly haven't a clue what it means to have such a small baby.

"Micro-preemie babies usually have complications in areas such as breathing, eating and are fragile. Ayla has needs that require specialized therapy."

"Oh..... sounds scary. But you're just at home, right?"

"Okay, I'm going to pretend that you don't keep saying, "just at home" because staying home with Ayla is not like staying home with a "normal" baby, get it? I don't sit around eating bon-bons and watching TV, she's a lot of work! "

"Got it."

Our actual conversation was longer (and he really didn't get it) but the point being that most people have a difficult time comprehending why we can't leave Ayla with a sitter or at a daycare and why she isn't doing what a 'normal' baby can do at her age. It gets tiresome 'defending' her at times....especially when we tell them she is almost 8 months old but 4 months adjusted. I try to be patient but 2 days of "defending" Ayla has placed me in a sticky mood...I felt like a broken record explaining the same things over and over. Wouldn't it be cool if Oprah did a show on real micro-preemie babies? I think perhaps 2 days of non-stop food show chaos has finally tapped my brain! ha!