Easter at Canyon Lake!

 

Retta fit in her basket this year!

 

Jaja encouraging Retta to eat.

Retta thinking about it...

and finally eating!

Cousin Noah (AKA The Playboy Bunny) eyeing the food.

 

 

Retta discovering her toes!

Dad and Retta!

Easter 2012

Retta wanting nothing to do but play with her toes...

Attempted cousin picture; Retta wasn't excited about the opportunity.

Noah hit the pool for the first time. He loved the water and wiggled his body around like a little merman!

Retta wanting to lounge in her new mesh lawn chair.

We'll try on the bikini after surgery!

Half Birthday!

            A 10 pound 7 ounce baby....
                                                            "...WHAT?"

                                
       That is what I enthusiastically shouted at Retta's last cardiology appointment soon after placing her up on the scale. The nurse stated..."10 pounds 7 ounces!"  And I began to argue that there must be a mistake. She couldn't have possibly gained a whole pound in little over a week.  I begged the nurse to let us weigh Retta in the nude (to get a true weight) and she looked at me like I was crazy.  So I insisted that we at least take off her diaper (which was wet).  The scale only went down an ounce (10 lb 6oz).  The nurse then replied, "I don't think her dress weighs that much...10lbs 6 oz it is."

      Little did the nurse know that Retta had been saving up her poop for the big day - which I swear gave her at least another 2 ounces. (She promptly relieved herself as soon as we got home). But we'll take the weight however we can get it!

      So Last Thursday we met with Dr. Kupferschmid, the pediatric heart surgeon who will be performing Retta's surgery. It was a lengthy visit which enabled us to spend a good amount of time asking questions. Surgery is scheduled for Wednesday, April 18th at 7:30 am. I will take Retta up to the hospital the Monday prior for pre-op lab work and to familiarize ourselves with where we are  to arrive at 5:00 am morning of the surgery. The actual procedure will take around 6 hours, including anesthesia. We hope Retta's stay in the PICU will only have to be a couple of days as only one parent is allowed to accompany her there at night.  As soon as she is transitioned to an intermediate care floor both Szymon & I will be able stay overnight...in one foldout chair.

     We received specific instructions for how to bathe, feed, prep, etc Retta leading up to the surgery. But other than that - everything is a go...unless she should catch a bug! We'll see Dr. Tardy (Pediatrician) this coming Tuesday for Retta's 6 month check up. He has been in touch with us by phone over the last two months (since he saw Retta at her 4 month check-up).  How many doctors do know do that?  The surgeon asked that we hold off on Retta's 6 month immunizations this appointment (which was fine.with.me) as it is so close to the surgery and could interfere with base line lab work.

     Dr. Melhoan (Retta's cardiologist) told us that if we are praying people (WHICH WE ARE)...start praying! And if we need specifics to pray for...pray that Dr. Kupferschmid is having a really good day - day of surgery!

    Retta continues to surprose us each day! Just when I think she is not going to do anything new until after her surgery..she does something new.  Just within the past few days she has started grabbing at her feet (something we have been practicing in therapy). She turns into a PARTY ANIMAL around 10:30 every night and wants to stay up dancing until 1:00 am. She is all smiles when at home in her own environment and a bit more reserved when with a large group of people. We have started feeding Retta rice cereal a few times a day just for exposure. She will track the spoon and open her mouth like a little bird; then spits most of it out . We will really start solids after the surgery.

    So here is Miss Retta on April 6th
(6 months old and 10+ pounds)
all ready for FIESTA!

"Little Stinker"

Baptism Day!

Holy Spirit Catholic Church

San Antonio, TX

March 10th, 2012

Lord,

Protect this little girl

Who's loved so very much,

Show her everything there is

to see and hear and touch.

Thank You for Your presence

on this Holy Christening Day...

May you lead this precious child

forever in your way.

 

 

 

 

 

 

 

 

 

 

 

"Let the children come to me; do not prevent them,

for the kingdom of God belongs to such as these."

Mark 10:14

A measly 4 ounces...

God bless those whose hearts are pure, for they will see God. Matthew 5:8

       A measly four ounces is all Retta was able to gain over the past 5 weeks...a measly.four.ounces.

       This means she went from 9 lbs 4oz on the pulmonologist's scale to 9 lbs 8 oz at 5 and 1/2 months.  I was already planning the celebration for hitting 10lbs...but instead drove home from the clinic in tears.

      This small weight gain really has nothing to do with anything as the cardiologist is still calling the shots and feels Retta looks fine for surgery (late April...still no specific date...Rrrrr).  This is nothing but my own personal haste.  But if a team of physicians and specialist repetitively tell you that your daughter will need to have surgery before 6 months of life "whenever she hits 11 pounds,"  and time is falling short; it is hard to not feel defeated.  It is hard to not take it personally as if I have failed my child.  If we are lucky Retta will be around 10 and 1/2 pounds at time of surgery....if we are lucky. 

     When Retta doesn't want to eat - there is nothing you can do to force her to eat. I have tried everything when she refuses to finish her bottle - including holding her meds until the end of a feed so she will be more inclined to take a few more sips to wash the icky taste out of her mouth - to taking a syringe full of fortified breast milk and actually squirting a into her mouth bypassing the bottle all together.  Retta however is much too smart for these tactics and promptly pushes the milk out with her tongue forcing it to run out the sides of her mouth.

"No, that's not going to work mom!"

(Routine EKG)

      And so we are told that this is all to be expected and all just fine. Eight ounces is not going to drastically change the size of Retta's heart.  However, it still continues to be our focus and ongoing concern....with.every.bottle.  Maybe if this surgery was on another organ in Retta's body I wouldn't be so hard on myself.

     When I review what all Retta's heart is having to do to pump oxygenated blood throughout her body...I cut her some slack and I am reminded exactly how hard she is working day in and day out.

Here is a good review!

All smiles for Dad!

       The cardiologst explained that the surgery to repair Retta's heart is just as much art as it is science.  Every defect is a bit different and there is no telling exactly what he will have to work with until he gets in there.  He said the procedure was "as intricate as sewing two wet pieces of toilet paper into a hat."
                                 (...because we all need a hat made out of toilet paper!)

Patiently waiting...

February Foto Dump!

             

          Due to my own negligence...or better stated; lack of time over the last month or so - I just decided to DUMP a few of my favorite clips to capture February!

                                       A bit random; but here goes.....

Retta makes it very clear when she is not feeling photogenic. She has a way of slouching her body to where she can slide down anything when she is the least bit interested in something.

...Finally she fell asleep here and we snapped a few!

***

 A rain storm caused our power to go out for a few hours in the middle of the day; so I bundled Retta up in the warmest items of clothing we could find and had a photo shoot! It got chilly in the house, but Retta was all smiles!

***

 

 

 

We practice "tummy time" ALL DAY LONG! Our OT, Barbara thinks Retta is more in the workout zone when she wears a headband - what ever helps! Retta is slowly gaining better muscle tone, but she still remains pretty hypotonic. This is just a part of Down Syndrome. We are currently working on rolling over. Retta still needs some help with this, but she is persistent and such a hard worker! It's way too early for the Bumpo...but we had to give it a try...don't tell our OT - she is not fond of Bumpos!

***

 

& the best of the piggies! We finally figured out what to do with all that hair! Now we need TWO bows in every color!

\Retta's weight gain has slowed down a bit during the month of February. She roughly gained only a half pound...most likely due to her increased activity level and intense workouts! (She hit 9lbs 3oz!)  However, the cardiologist is still happy with how she is progressing. Retta will be presented at conference today (Thursday) so we'll let you know when the big day will be as soon as we hear!

 

***

Little steps in the right direction!

One Month Old....just home from the NICU!

(5lbs 8oz)

Two Months Old...and a much happier baby at home!

Three Months Old! Fitting into 0-3 month clothing...kind of.

Four Months Old!

(8lbs 15oz.)

...Sport'n the piggies...

& practicing head control!

                                      ....there she goes!

5 months old will be here in a few days!

If I can pull it together; there will be more to come - complete with an update on surgery plans.