Wednesday, January 10, 2018

Excuses for 2017

Hello Blog Friends!

I know, I know, I was MIA AGAIN!  Of course I have good excuses, I always have excuses...

Today I wanted to update everyone on family stuff.  You know I had twin babies in 2016 and Lily had some health issues, but I don't think I ever really updated you guys on what happened.  Because of her traumatic entry into this world, she suffered a brain injury that caused her to not have a suck/swallow reflex and caused some other motor skill delays.  Before she was discharged from the NICU in December 2016, she had received a tracheotomy and a fundoplication and g-tube placement.  She got the trach so we can help her manage her secretions as she doesn't swallow the saliva and mucus that her body produces.  The fundo keeps her from refluxing and the g-tube is how we feed her.

Considering the doctors and staff and the NICU didn't think Lily would do much of anything, she has come SO far.  She is definitely behind developmentally, but she is working on crawling and she will probably be walking by summer.  She has significantly better motor skills than anyone expected.  She WANTS to eat, she tries to steal Paige's food all the time.  I believe when she is a little older and can understand, we may even be able to teach her to swallow.  The state has a program that sends different therapists based on your preemie's needs to the house to do therapy with her.  Currently, Lily has a physical therapist, occupational therapist, speech therapist and a feeding specialist that see her a couple times per month.  I'm sure she would be developing at a much slower speed if we didn't have all these specialists coming to teach us how to work with her. 
Lily crawling for a toy
Lily's condition sets her up to get sick easier than most babies.  She has had MANY hospital stays in her short little life.  Most commonly, she gets pneumonia and rhinovirus, but she ended up in the PICU once for RSV so far.  The times she is sick are scary for all of us, but we are learning more and more how to manage her symptoms and the hospital stays are getting shorter and shorter.

Recent hospital stay.  She didn't feel good. :(

Paige never even believed she was a preemie.  A short 3 weeks in the NICU is really amazing for a baby born 7 weeks early.  She is walking and starting to say words.  She almost refuses to let anyone feed her because she is independent and wants to do everything on her own.

Paige found earmuffs
Both babies have SO MUCH personality.  They have strong opinions and voice them often.  They definitely keep us on our toes.  Melanie has been a wonderful big sister.  She doesn't hesitate to jump in and help if someone is throwing a fit or just needs someone to play with.  She isn't as keen on helping with diaper changes or trach suctioning, but hey, who could blame her there?

Naps are fun




Having a house full of kiddos with such varying needs can put strain on relationships, but hubs and I are going strong.  The keys are patience and understanding and a good foundation.  We have definitely developed those things over the years.

Life is very different than it was 5 years ago, heck even 3 years ago.  I don't think any of us would change how our life has turned out, though.