Tuesday, July 30, 2013

So...you think I have it all together...

Pardon me, but step aside whilst I vent...Since my darling daughter has been born, I had to step in a be a full time nurse.  (no offense to you "schooled" nurses) but yes, I was and still function in that role. The ONLY difference is my shift didn't ever end after 8-12 hours.  I remember crying because I thought she would never know I was her mom because I was pushing meds, giving breathing treatments, changing trachs and gtubes, dumping feeds, cleaning vomit, changing linens...forget being able to cuddle or love on her...there were too many machines and tubes in the way for that...oh and let's not forget machine maintenance and upkeep. Waiting for hours in waiting rooms for countless appointments only to be let know up front if you were ever 10 minutes late you would be rescheduled.  Countless hours in surgery waiting rooms.
 Oh yes,  and an administrator/insurance person.  Can't even count the number of phone calls and appointments just to get insurance needs met.  Then we had therapy coming in...so add to that all the fun exercises, stretches, and "tortures" I'm needed to add into our already unending day of demands...but hey, I don't work outside the home so what else could I possibly have to do?  Oh wait...endure the endless crying of your tiny baby ON therapy days because even though it's painful and hard work you know it's for the best.  *insert hooking myself to a milking machine every three hours of the day because it's the only way I feel like I'm being a good mother*

How about depending on "professionals" to be guiding you in the right direction...no matter what you think maybe right and getting years down the road to find you really were and you feel like you just didn't fight hard enough.

I still do most of these tasks, minus several machines.  As of this fall, I will undertake her education needs as well because it's best for her health.  As of today, I will be her nurse, teacher, advocater, insurance person, PT, OT, ST, and feeding specialist because her therapists think she needs a break...bc they feel she's in too much of a comfort zone AND due to my pregnancy and the new baby soon to come, "I won't/don't have time to do what needs to be done for her"

There are days that I feel like a complete failure. It's never ending...and days like today come and go routinely.  Someday, maybe, I can separate my emotions for all the "jobs" I'm carrying, but today is just not one of them.
 Thank goodness for my friend in GA who let me call and we talked, laughed, cried and shared our still very similar journeys.  She's the lifesaver God threw in the ocean to me several years ago.  Talking to her made me feel "normal".
In the end, I'm just an ordinary person living in extraordinary circumstances feeling the weight of the life of my precious child's life in my hands.


Monday, July 29, 2013

Looking back AND ahead

This past weekend we spent packing up the craft/storage room to make room for baby.  There is still much to be done, but there is progress.  As Matt brought in the gently used crib that had been given to us, my heart did a little flip flop.  I didn't think he was going to put it together, but he did and now I look at it in amazement.  It just doesn't seem real.  Of course, it sets my mind to thinking about the last few weeks of pregnancy with Lillian.  Maybe some know, maybe some don't...I was on bed rest due to blood pressure complications and we HAD to move from our home.  We were losing the home we had bought and lived in the last couple years.  We moved in the first week of November, and because of my bed rest, most things still sat in boxes piled up everywhere.  Three weeks after moving, she was born.  My sister and girls had been busily preparing the room for Lillian fully anticipating our arrival home shortly after delivery.  Diapers opened and waiting, dresser drawers filled with all her little clothing.  Everything in  it's place.  Waiting.
It is almost bittersweet to be preparing this room for our little baby boy.  Sounds strange doesn't it? While I don't sit around lingering on what if's, I would be lying if I didn't say that fear creeps into my brain at times.  Even through my whole pregnancy with Lillian there were never any signs that she would be so critically ill when she was born.  So as closely as I'm being monitored and ultrasounded, that thought will pass through my mind.  I think breathing will come much easier when I hear his first cry and see him breathing effortlessly.  For me, it is a strange mingling of grieving and joy.  Back and ahead.
What I do know?  God is sovereign.  He is already there, preparing our future, whatever it holds.  My faith is strong.  
Romans 8:28 " And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose."

PS- Lillian loved having the bed put together and she insisted he needed a pillow in there too, so she went to the couch and placed one in the crib...AFTER she got her step stool so she could reach.  

Monday, July 22, 2013

Dr Lungs update and other good stuff

Lillian spent her very first over night away from Mommy at Grandma's this past weekend.  Course, two big sisters were along too, and she only really cried for me at bedtime.  It was entirely her idea and she basically ushered me out the door and slammed it behind me.  When I had to come back and drop off her car seat, she was none too happy to see me again already. lol.  Growing up.  It just so happened that the other two girls were off at camp.  It was the first time in seven years we have had a night alone with NO children.  So peculiar.

Today, Lillian has her quarterly appointment with Dr Lungs.  She will remain on her rotating antibiotic course.  Inhaled meds one month and a change to a different oral/gtube med on the off month.  It did bug me that her sats were just 94/95.  She used to always sat at 99/100 when she's healthy.  It made me wonder if it is a sign she is having diminished lung capacity.  94 is still a good number...I just rather it had been higher.  She will likely remain out of the classroom this fall due to her puny factor.  The one time this year I've exposed her to a small group of children, she got really sick.  ICK,

She is super excited about the baby on the way and loves kissing my baby bump.  She loves sorting through all his baby things and oohing and ahhing over everything.

It's been a long day, as always when we make a trip down south, I'm whooped.  Not really too much more to report, thank goodness.