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