A month of growth!

              7 months old               

       ...just home from the hospital

May 6th, 2012

"I'm a cutie and I know it!"

"Come read with me!"

***

8 months old!

June 6th, 2012

Definately more rolls!

And even more personality!



The big cut!

       As soon as Retta was born it was clear that her head was a little misshapen  (AKA plagiocephaly) due to her breech presentation. Over the last six months, with help from OT, we have consistently worked to keep Retta positioned OFF the back of head in hopes of reshaping her noggin.  We saw some results from our efforts; but I wondered if there was anything else that could be done since Retta had several factors working against her head reshaping itself with time alone (hypotonia associated with DS, delayed physical development prior to surgery due to mere exhaustion and NO "tummy time for six weeks post surgery).  Our pedi recommended The Cranial Institute in Austin and we were able to go for a consultation prior to Retta's heart surgery.

      Come to find out - Retta was a good candidate for "helmet therapy."  We decided to get started soon after surgery (when her noggin growth would really take off and before her fontanel would close.)  In preparation of Retta's new accessory, "the DOC Band," we had to cut that precious piggy hair.  But really "a bob" is just what Retta needed. Something new, something fresh for summer and something out of the way of all that spit up!

     So for the last three weeks we have been making weekly trips to Austin to have the DOC band adjusted. We should graduate to adjustments every two weeks very soon, but in the mean time we are taking full advantage of being able to meet up with Aunt Angie and Miss Reese!

     Here are a few pics from the haircut experience at Crewcuts and Pigtails. Dad met us on his lunch break!

Before....

"Be very careful...just a little trim!"

"Dad, enough with the pictures, you're embarrassing me!"

....& After!

"OK, I approve."

 

      Retta has taken well to her tiara and for the most part doesn't even seem to noice she is wearing it.  She keeps it on for 23 hours a day (off just long enough for bath time and poodle fluffing).  She will most likely have to wear the band for 12 weeks.

      BUT DO NOT FEAR! The DOC band is open on top. So Retta can still sport the piggies! 

                     Or lately, a side pony!  ....Very hip!

Hearts all better!

"My hearts all better!"

       We have come full circle!  Retta was discharged home a full eight days after undergoing open heart surgery!  IT IS BEHIND HER!  Our little fighter pulled through once again - this time involved kicking and screaming (literally), but all for a good reason!  Retta was transferred to an intermediate care floor just after three days in the PICU.  For a while we felt we were never going to go home. Retta's oxygen sats waivered for days on end in the upper 80's - lower 90's.  Everyday the nurses and physicians attempted to ween Retta off the oxygen with little success.  Finally after days of watching the monitor and cheering Retta on in exhaustion - the cardiologist came in and said,"she looks so comfortable," and just like that - gave us the OK to take her home contingent that (1) we would call and/or bring her directly to the ER with any concerns and (2) we would follow up with him in the office that Friday.
     ...Little did the cardiologist know - we had already dressed Retta in her going home outfit after her bath that morning. WE WERE GOING HOME!

     Here is Retta back at the hospital for Post-Op lab work the following Friday. Cheeks still healing from the tape that held her nasal cannula in place for eight days straight.

     And one week later, back at the office - the cardiologist was thrilled (as so were we) to see Retta's heart transformation via echo.  No longer was there a frantic tornado of swirling blue and red on the monitor.  Now a clear picture of a little heart (that even I could recognize was a heart) with four distinct chambers comfortably pumping away!  Dr. Milhoan pointed out a few very, very small leaks in the repair (which was expected).  However, he was surprised to see how insignificant they were compared to how things looked at the end of surgery.  He described the leaks to be "smaller than a human hair."  Which means that at this point, the odds are against Retta needing an additional repair later in life. Thank goodness!  We followed with the cardiologist closely and recently graduated out to three month follow up visits!  And the best part is - we have discontinued ALL of Retta's cardiac medications!

***

     As soon as Retta got off the pain medication. She hit the ground running! (not literally - but at this rate...it will be very soon!). OT, PT & Speech therapy all resumed 1x week. Her endurance rapidly increased upon coming home while her strength followed a bit more slowly.  She is now gaining strength in her core and is getting better at sitting with a little support.  She also was able to resume solids and seems to actually be swallowing some of her food now.  So far her solid diet consists of rice cereal, oatmeal, sweet potatoes, butternut squash, peas, carrots, apples, pears, bananas and mangos.  I'm making my own baby food and having a lot of fun with it. (Szymon wanted to make sure i didn't put any breastmilk in the mango...so he could throw a cube or two into a margarita! Go figure).  And weight gain is no longer a problem!  Retta has averaged a 1/2 pound weight gain per week after surgery. Which means we are pushing 14 pounds and already wearing 6 to 9 month clothing! BIG GIRL!

"Are you serious Mom..that bowl is huge!"

RRRRrrrrrr!

Laughing while eating can be dangerous!

Snacking before bed.

***

Retta's social life has also picked up! We are no longer forced to be home bodies. Retta now goes to the grocery store, out to eat, to happy hour, to lunch, to get a pedicure (me not her), out on shopping trips, to graduation parties and baby showers just to name a few...all in addition to her ongoing doctors appointments!

Happy hour with the girls.

 "Are you my Momma?" No, it's Aunt Nicole!

Peeking out from the car seat cover at HEB.

Breakfast at Twin Sisters Cafe with Dad.

Crashed out at Central Market.

& Lunch with Aunt Angie and Miss Reese in Austin!

 (Yes that is spit up flying out of Retta's mouth)

     And speaking of spit-up...it returned with revenge as soon as feeds were resumed at the hospital.  After numerous appointments to address this ongoing issue; the best theory anyone can come up with is that Retta's body is having to adjust to her new eating abilities. She is now taking in 2 to 3x more milk a day at a much faster pace and with increased force. The girl likes to eat! There seems to be nothing we can do to cure her from this plague until she grows out of it. So in the mean time, BIBS, BIBS, BIBS! We have invested in bibs that are super absorbent and easily go through a dozen a day!

***

Trying to catch up on my posts... more to come on moving and Retta's new accessory!

Day five and counting...

Retta has come a long way since last Wednesday...

We've gone from this wild woman (Day 2) ....

(Some may find the video below disturbing...and note - I sound completely invalidating).

 (Believe me when I say - you don't want to see Day 1)

....to this little sweety (Day 4)!

"I'm ready for my ice cream and Nintendo!"

        Now we are just waiting to get Retta off the Oxygen and to have her two drains pulled so we can GO HOME!  (No pressure Retta).  The drain output has significantly decreased over the last 12 hours however she is still requiring an 1/8th liter of Oxygen (a wisp) as result of remaining fluid on her lungs. The cardiologist is hopeful to pull the drains if not by this afternoon, by Monday morning.  ...Most likely Monday morning!  Then they will want to wait a good 24 hours and re-X-ray Retta's lungs to make sure it is safe to be discharged.

Little body in a big bed.

Retta's Heart Day

     It was a surprise Wednesday morning when Dr. Milhoan (Retta's cardiologist) stepped into the waiting room (an hour into surgery) and plopped himself down in the chair next to me - whipped out his cell phone and asked if we wanted to see pictures of the surgery.  My first response was "No!" but he assured us that he wasn't going to show us anything gruesome. These were a few of the pictures he shared with us of the operating room and surgery under process!

Lots of equipment!

Dr. Kupferschmid (surgeon) is on the right with the green mask. Loretta's little head is peaking out under the curtain and resting on blue egg crate.

Dr. Milhoan said he was able to put his hand on Retta's head and pray for her before the surgery began! He also shared scripture with us as and a prayer before they whisked her back to the operating room. (All which now is a blur to me.)  I couldn't believe how fast it all happened.

Good Morning!

       I envisioned myself sitting next to Retta's bed days following the surgery - reading books and magazines, browsing the Internet and leisurely blogging on Retta's progress to warn off the boredom that comes from being stuck up at the hospital. However that has not been the reality. We have been up on out feet at the bedside around the clock, assisting a constant flow of medical staff, attempting to pacify, comfort and feed an extremely fussy baby - without the ability to hold, rock or utilize measures that typically sooth Miss Retta.  From what we are told by the cardiologists and surgeon - the surgery went really well. We have witnessed several "valleys" which we are told are all to be expected following bi-pass.  It has been emotionally draining to stand helpless over Retta when she is kicking, pulling on tubing and moaning out in misery. We were told the first day is the worst....then we were told the second day is the worst...we are now at day three and I have no idea what we are walking in to. I only hope she will have more and more moments of rest and less and less bouts of uncontrollable pain.

     This morning the internist told us that she was going to write orders to transition Retta to the intermediate care floor after the removal of her central line!  This is exciting and also scary as we will no longer have a 1:1 nurse around the clock. We haven't been able to take many pictures nor have we wanted to capture this trying time, but hopefully there will be more to come!

  

Ready or not...here we come!

Miss Mae Pre-Op Trooper...

s

...only cried briefly for the lab work.

She must have liked the nurse...since her name was Loretta too!

Attempt at mother daughter portraits to pass time waiting for radiology...

"Mo-ther. Please - lets go home!"