Happy 6 Weeks!

Pretty girl!


Give all your worries and cares to God, for he cares about you.
~ 1 Peter 5:7

Dear family and friends,

I can't wait for Thanksgiving to finally be here ...for the fact that all doctor's offices will be closed and we'll be able to enjoy time with both sets of grandparents (at the same time!) We have had a string of nine doctors appointments/ medical evaluations and procedures within the last two weeks! ...And we are exhausted! We have been singing the "GObble, GoBble" turkey song all week in preparation for Turkey Day...even "Dad" now knows the words!

Pedi - Dr. Gunsberg's office

This Monday we made our first trek to the pediatric cardiologist office. First thing in the morning I called the clinic and was able to squeeze Retta in early (due to unnecessary worry and drama stemming from our two doctors appointments on Friday - long story). The trip was a bit disheartening for me as I felt a flood of emotions associated with the location of the clinic. Last year at this very same time Szymon and I were making numerous trips to Methodist Plaza.......We would park on SL2 in the garage, take the elevator to the 2nd floor get off and take a left into the San Antonio Fertility Center. Never in a million years would I think to find myself parking in the same exact garage, taking the elevator once again to the second floor of Methodist Plaza only to get off and take a right into the Pediatric Cardiology Clinic....

For years all I could see were pregnant bellies all around me. ....Now it seems, all I see are healthy children. This last year in particular has been extremely challenging for Szymon and I. Although we are SO grateful and happy to have our little miracle home - there is still so much to grieve; and the process seems to be ongoing.

There was a short story that was presented to me while at the hospital titled, "Welcome to Holland," that I thought I'd share. It really does a good job capturing a glimpse of what it is like to have a child with a disability as well as the many of the emotions we are still processing. I can't help but cry every time I read it.(See below)

On a positive note, Retta and I successfully made our first trip to the doctors office; just the two of us - without a third support person. She nowweights 6 lbs 3 oz! Not exactly the weight the doctors were hoping for; however they are cutting her some slack while we figure out how to increase hercaloric intake without increasing the volume of her feeds. We are now involving a nephrologist to help with this task. Retta is now a good little eater, however her heart is just working so hard to pump blood to her body that she is burning everything she gobbles up. We will keep you posted on her progress!

Much Love,
Ashley

 

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

*     *     *

An Update on Miss Retta!

"Goodbye NICU!"

Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.

~ Philippians 4:6

Hello All!

Well after 30 days in the NICU we are finally home! (So sorry for the late update...it has been a whirlwind here at the Waclawiak household!)

So, the last week at the hospital was quite labor intensive as Retta's feeds were once again increased (this time to 60cc's.) Retta had to provethat she could take all of her feeds without help from her NG tube...which was very frustrating and exhausting just to watch. This meant even longer hours spent up at the NICU for Szymon & I as we wanted to be present to practice each feed and encourage Retta along the way. Finally, thanks to a miracle working - drill sergeant nurse named "Trish" the NG tube was finally able to be pulled. Just a few days later our neonatologist was talking about discharge! And actually, the word "discharge" completely took us by surprise. We felt unprepared to actually have Retta come home since we had been living at the hospital for over a month.

Before discharge we were seen by the developmental specialist in town whom we will be also following with on an out-patient basis. The specialist spoke highly of Retta's abilities and mentioned that she was "a very social girl," wanting to be involved in all that was going on around her. With help from family we made the celebratory transition with loads of excitement...and maybe a little fear. On Wednesday, 11/02/11 Retta "busted out" of the NICU and was able to breath fresh air for the first time! She waived "goodbye" to all of the NICU staff on her way out (see picture).

The first night home was very long. We were concerned with Retta's ability to breath being disconnected from several monitors for the first time.I think we averaged an hour of sleep each. Thank goodness Grandma Johnson walked through the door the following morning! Once again, she came to our rescue and has been helping us get organized and into (some form) of routine.

Due to several ongoing medical conditions Retta will average 2 to 3 medical appointments a week...the calender is booked! We have already ventured out to see our Pediatrician, an ENT specialist and back to the hospital for a sonogram of Retta's hips. (All appointments went well!) In addition to appointments, keeping up with Retta's medications and feeds has turned into more than a full time job! In order to help Retta gain weight with her heart condition we are having to fortify my breast milk. This means twice the work every three hours...pumping, fortifying the milk, feeding Retta, cleaning the pumping parts and repeat! Full circle the process takes about an hour and a half...and then it is time to start again.

Next week Grandma will be heading back home to Houston and I will be on my own while Szymon is at work (SCARY!!!) However, I'm sure in time the new routine will become our norm.

We appreciate your ongoing prayers!

Much Love,
      Ash & Szy

Thank goodness for nurse Trish!

We're Home!!!

Off to our first doctors appointment! (Buzi wanted to come along too)