Retta's 1st Christmas!

Thank God for this gift too wonderful for words!

~ 2 Corinthians 9:15

               Merry Christmas! We had a wonderful first Christmas with Retta filled with lots of family, lots of love and lots of presents! We started off our celebration at Bapcia and Jaja's house Thursday evening where we partook in the making of traditional Polish pierogi...which was later consumed at theWaclawiak Christmas Eve dinner. Yum! 

             We arrived late to the Christmas Eve festivities due to a minor hiccup. Just when we thought we were free of medical appointments we found ourselves on the phone with our pediatrician Christmas Eve morning. Thank goodness Dr. G was on-call for the practice! Retta started vomiting at 3:00 AM what appeared to be bile - complements of her upper GI and barium swallow on Wednesday. To make a long story short we got the vomiting under control with Pedialyte and were able to avoid heading back up the the hospital. We spent the most of the holiday talking about Retta's bowel habits... thanks to the delightful Barium. But in the end everything was just fine. The upper GI procedure was really pointless as we were already aware that Retta was refluxing...but after much resistance on my part...we finally went through with the procedure. Now the doctors are covered and it is medically documented that YES Retta has reflux and YES we should proceed with the preventative measures that we already have in place to reduce her reflux and risk of aspirating. Goodness!



          Miss Retta continues to be a little trooper despite all she has been through! She brought everyone lots of smiles on Christmas Eve! Here she is hanging out with Dad in the kitchen at Bapcia and Jaja's house.

         Grandpa, Grandma and Uncle Brian (Santa and his elves) arrived at our house late Christmas Eve night!  We slept in and woke up to sausage balls baking in the oven! It wouldn't be Christmas morning without sausage balls! We hung out in our PJ's past noon, slowly opening presents and indulged in a wonderful Christmas brunch of special treats we only see once a year! Retta won with the most presents under the tree...despite sleeping through the process of opening them! We actually almost lost her under all of the wrapping paper for a quick moment!



         

        Later Christmas day, Szymon's parents joined us all back at our house were we continued to eat, drink & be merry!

Matching mother-daughter Uggs!

         Dad started to have a little too much fun Christmas night and broke out his hideous plastic jacket he purchased from Buffalo Exchange on the Drag years ago. (I have personally given this jacket to Goodwill at least five times now. Somehow it always finds it way back to Szymon's closet!) We completed the look by adorning Szymon's gorgeous hat hair with one of Retta's hair bows. Like father, like daughter!

This is the start...



This is the start...







This is your heart...

...This is the day you were born!

***



This is the sun....

These are your lungs ....

This is the day you were born!

***

And I am always, always .....always yours!

A Quick Run-down!

"Hello my family and friends!"

The Lord directs the steps of the godly. He delights in every detail of their lives.

~ Psalm 37:

OK, so I really don't have a good excuse for the lack of updates over the last three weeks...other than the fact I'm providing complete care for a newborn and managing her ongoing medical care. ...Not to mention, Szymon & I both came down sick last week. I absolutely dislike being sick and now can say - I even more so dislike being sick while caring for a baby around the clock!  But we survived and thank goodness Retta has yet to display any symptoms (we were really worried!)
 
So here are the high points to catch everyone up!

We are happy to say that over the past few weeks Retta has started to significantly gain more weight thanks to a new fortifier we are using (DUOCAL) to make my breast milk a super charged, high-fat, protein shake! Within the first two weeks with the DUOCAL Retta gained 15 oz on the pediatricians scale. We have fun telling Retta she is going to the doctor's office for a "weigh in," as if she is a wrestler preparing for a match. Szymon enjoys weighing himself and then weighing himself while holding Retta & subtracting the difference before bath time to get an extremely rough estimate of her progress. (FYI...Szymon gained 4 lbs on Thanksgiving day!)  

Due to the fact that Retta is weighed on various scales at all of her doctor appointments it is hard to say exactly how much she weighs. We like to strictly go off the pediatricians scale for consistency. Our next official "weigh in" is next week...but at our last pulmonology appointment on the 12th she weighed.......

..........7lbs 8oz!

                          Big Girl!

Bath time!

With Retta's increasing appetite she has starting to take (most) of her feeds in a more timely fashion (20 to 30 minutes)....every 2 to 2 & a half hours.  We now have the "OK" to feed her pretty much whenever she is hungry with little concern for fluid overload.  So I am feeding, pumping, feeding, pumping, feeding, pumping and feeding. With the increased intake she has started to sleep 6 to 7 hour stretches at night just within the last few days! (I hope I did not just jinx myself by sharing that).

ECI (Early Childhood Intervention) also came out and completed their series of evaluations over the past few weeks. We are now receiving bi-weekly visits (at home) from an occupational therapist (OT). In the future physical therapy and then speech therapy will be added.  Retta knows when new voices are in the house and likes to perform. She has shown off her skills every visit and even taken me by surprise! ...now why she will not take a bottle in 15 min when I'm the only one home ....I have no idea...?
The surgeon who completed Retta's duodenal atresia repair gave us the "OK," to no longer follow with him as Retta has healed nicely from the procedure.  However, our Pedi decided to add a GI specialist to the mix to assist us with Retta's ongoing reflux. The surgeon explained that in addition to being premature Retta's stomach anatomy (from the surgery) is contributing to the reflux, but hopefully in time she will grow out of this.


While at home, Retta has also had the opportunity to meet several friends who have stopped by! This has been SO nice; since our only outings are strictly medical appointments...and I have started to go stir-crazy being cooped up in the house.

Meeting Cheryl, Kiera and Tanya!

Meeting Angie and Nicole....and their pregnant bellies!

EATING, SLEEPING, MEDICAL CARE and PLAY...the life of Loretta Mae!

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)

Retta's 3 weeks!

Family pic!

And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.

~ Romans 8:28

Hello All!
We are happy to share that week three has been much more eventful! We feel we are now making progress! We have never been so excited to talk about feeds and poop!

After ten days of not being able to take anything by mouth, last Friday Retta was started on 4cc's of breast milk every three hours and has been able to tolerate being titrated up to a "full feed" of 45cc's every meal. She has surprised us by how fast she has learned how to feed. Last week she struggled to take 4cc's and just today she showed us that she is able to gobble down up to 40cc's a feed! (The remainder of each feed is given to her through her NG tube).

As result, her PICC line with TPN (nourishment via IV) was discontinued today! She is now a free baby no longer attached to an IV pole and able to receive needed medications by mouth. The goal is for Retta to be able to take all of her feeds by mouth without help from the NG tube. We are told that it is common for babies with cardiac problems to tire easily when feeding which is why Retta usually drinks herself into a deep sleep. But if she continues to progress at her current rate we hope to have her home soon! This Wednesday we were able to meet with a geneticist in the NICU. By looking at Retta's chromosomal analysis he was able to tell us more about Retta's diagnosis of Trisomy 21. This was an intense and emotional meeting; however very helpful. With my age we had a 1 in 950 chance of having a child with Down Syndrome. There was nothing that we did or could have done to cause the syndrome.

If anyone is interested in reading more about Down Syndrome below are a few helpful websites we have been referred to.http://www.ds-health.com/http://www.ndss.org/ The social worker in me has always been big on using "people first" language and so I was happy to see that the NDSS has a preferred language guide.

Check it out!http://www.ndss.org/index.php?option=com_content&view=article&id=62&Itemid=84

Much Love,

Ash & Szy

Morning exercises!

Loretta Mae's 2 Week Update!

Hello family and friends!
    Week number two in the NICU has been eventfully ....uneventful as we patiently wait for Retta's stomach to heal.  We have been spoiled by having Grandma stay the week with us! She has helped us set up a routine in addition to washing  pumping parts around the clock, cooking, cleaning, doing ongoing loads of laundry, shopping, walking the dog, and providing ongoing emotional support.  All which has allowed Szymon to return to work and Ashley to continue healing.
....Next week reality sets in!

    Retta continues to receive ongoing visitors in the NICU throughout the day. Starting with Mom and Grandma in the morning. Dad at lunch. Jaja and Bapcia mid afternoon and Mom and Dad again in the evening. All week long we have been patiently watching Retta's suction tube pull less and less green gastric juice from her stomach; which means her stomach is healing and that we can resume feeds ....soon. We had high hopes to start feedings on Monday; however Friday is now the new start date!

   In addition to sleeping, sleeping and more sleeping - Retta has been busy practicing various exercises that the occupational therapist has taught us. On Wednesday we were pleasantly surprised to see that Retta graduated to a "big girl crib" as she is now able to hold her body temperature without assistance. The crib allows us to access Retta with ease which has helped us become more "hands on" parents. We have started Kangaroo Care and are also bathing Retta on our own every Tuesday, Thursday & Saturday. Retta LOVES her bath time especially washing her hair!

 

Kangarooing!

     This morning the GI surgeon officially gave orders to discontinue the NG (through the nose) suction tube in preparation to starting feeds on Friday!!!
(We hope)
    The next challenge is for Retta to learn how to feed as she was not able to practice swallowing amniotic fluid in utero due to the duadenal atresia. And then, the focus will be on gaining weight so we can bring Retta home and prepare her for her heart surgery.

Much Love,
  Ash & Szy

"My daddy makes me smile!"

                                                               

Come and see what our God has done, what awesome miracles he performs for people!

~ Psalm 66:5

  

Retta Week #1

Trust in the Lord with all your heart; do not depend on your own understanding.

~ Proverbs 3:5

Dear family and friends,

We can not thank you enough for the ongoing outreach of love and support you have showered us with this last week...yes it has been an entire week since our little Loretta was born! It is so reassuring to know we are not alone in this crazy adventure we have taken on to become a family! We could not do it without you!

Miss Loretta took us by surprise last Wednesday arriving nearly 5 weeks early at 4 lbs 15 ounces & 17 1/2 inches. Despite directions from our OB's nurse to wait until the following day for our next appointment; we headed to the ER last Thursday afternoon as we had a feeling something was not quite right. Just a few minutes after arriving at triage it was confirmed that Ashley was leaking amniotic fluid and as result; we were told that we were NOT going home. A C-section was scheduled just an hour later as Retta was positioned breach & was ready to come out!

Soon after hearing her first cry and meeting our little ("petite" as described by the doctor) bundle of joy - it was in the operating room (while under sedation) where Ashley asked over the surgical curtain if Loretta had Down Syndrome. There was a silence in the room & then our OB stated..."she may have some features." Retta was sent to the transition nursery & then transferred to the Neonatal Intensive Care Unit (NICU) for further evaluation. In route to recovery we made a swing throughout the NICU (in the hospital bed) where we were able to hold Retta one more time before heading to our room for some much needed sleep. ...Well Ashley went to sleep & Szymon headed back to the NICU where he became well known over the following nights as the milk delivery man and odd hour visitor.

The next morning a neonatologist came up to the room to meet with us and explained that chromosome tests were sent out to confirm the Down Syndrome diagnosis. Retta has several conditions common with Down Syndrome (specifically - Duodenal Atresia and a Complete Atrioventricular Canal defect CAVC). After a few days of struggling to toleratebreast milk bottle feedings, surgery was scheduled to repair the Duodenal Atresia (blockage in the upper small intestine). A PICC line was placed on 10/09/11 and surgery scheduled for morning of 10/10/11. Both sets of grandparents waited with Szymon in the waiting room during the surgery; while Ashley went back to her room (just down the hall) to rest on her left side due to elevated blood pressure. After two LONG hours the surgeon came out to share that the surgery was "wonderful" and that every thing went as well as could be expected. During the surgery a NG tube was able to be placed just past the surgical site to enable Retta to start receiving Ashley's breast milk before completely healing.

We were discharged home that evening with empty arms...it was a tearful ride home.

On Wednesday Retta was started on breast milk tube feeds at 2cc(ml)/hour and seemed to be tolerating them well until 0300 the following morning when she had a huge emesis. Feeds were put on hold and X-rays showed the following morning that the NG tube had been pulled up past the surgical site...by Retta herself! Later that day the surgeon decided to pull out the NG feeding tube all together as there was no way to put it back in place. This only means a longer recovery for Retta's stomach...& so we wait. Retta continues to receive nourishment through her PICC line and we continue to visit daily in eager anticipation of being able to start feeding her by mouth once again. We are told the healing process may take several LONG weeks. We have also been meeting with a practice of pediatric cardiac surgeons who are overseeing Rettas fragile heart condition referred to as an "AV Canal "or "CAVC" (a large hole in center of the heart affecting all four chambers where they would normally be divided). Surgery will hopefully take place between 3 to 6 months of age (when Retta is around 11 lbs). ...And so we patiently await Retta's recovery with lots of prayers. The shock of Retta's diagnosis has started to fade as we just hope for her to pull through each day so we can bring her home. All we have ever hoped for was to become a family; and that we certainly have. We have so much to look forward to and can't wait to take Retta tubing on the Frio River and hiking in the Zakopane Mountains! Retta has grown cute & cuter each day and we love her SO MUCH!

Attached are a few pictures of Miss Lorrretta Mae Waclawiak; we hope you enjoy!
Much Love,
Ashley and Szymon