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!