Piper Grace - Birth Update

Ok, I've struggled to find the time to post an update in between...you know, having a baby, pumping, and navigating NICU as a new mom. I have so much to say, and had no idea where to begin.

Then, this Sunday, I received an email from my Dad. He has put words to our experience as a family that paint a great perspective I know will touch you as it did me. His point of view gives an outside look at the emotion, love, praise, worry and hope we've felt this past week. Read his story of love for his family, and I will make some further Piper status clarifications afterwards.
For reference: KC Crew refers to Matt and I, NC Crew refers to my brother and girlfriend.

From Ray Tyler Email, Sunday, August 10th, 2014

Sunday - the grass is mowed and I am treated to something Mom and have had very few of since you were born.  A house all to myself.  Its kinda cool with the quiet and all but I think you know where I'd rather be.

As I cool down from the yard work I can't help but reflect on the last 14 Days.  Monday before last brought our NC Crew in to Texas and we did get to play, but the closer we got to the 4th, the more trouble I had in any focus on anything but our KC Crew. We kept up the normal routine, but everyone, whether talking to the KC Crew, or the combined Texas/NC bunch, were really starting to lock in on the needs of our impending Monday induction. (Especially when it got quiet.)

Last Friday, 8/1 was brutal for me. I knew Mimi was on the ground safe at KC, and  I planned on shooting you guys a note before work required attention. What got the day off great was a Blog-Update posted by SuperPreggo at 3am.  By the time I read through Tara's words and dried my eyes I felt unusually calm and instantly remembered one of the last comments Mom shared with me before walking toward the airline counter.  "God's Got This" - her words are ringing in my ears as I type this.  I sucked-it-up and got my note posted to you and the 4 hours of work I needed to get through just flew by "PTL!" 

Reflection Fast Forward to Saturday, Aug.2 - and we are all together at the Jarvis Hacienda.  I really have tried to track back through the time from Saturday morning to closing the car door after kissing Tara on the head as she headed for the hospital Sunday night.  It's quite a blurrrrr and luckily there are pictures of a fat guy in a kiddie pool that help me remember we did keep pretty normal in that time frame. Bottom line was we managed to soak the old people, eat too much and finish Sunday's breakfast with Tara's favorite KC beignets. The whole time I was completely amazed by the grace and composure of our KC Crew.  As Matty pulled out of the driveway Sunday evening  (Aug. 3rd) I remember thinking DoDo would need a straight jacket.

Fast forward to the 4th about 2;30pm - the Doc just said we were going to take a break and let Miss Piper run her own labor schedule for a while.  A little rest was good for her mom, but Piper's prognosis hung over our waiting family like a "Tornado Cloud." 

Again I saw our KC Pair: scared beyond comprehension but with Grace and Resolve I can honestly say was inspiring.  There was my baby girl hand in hand with her soul-mate ready to do anything necessary to give Piper her best shot of life past a 6 minute prediction.

Then, it was 5:24pm.  Tara and Matt did exactly what they had set their minds to.  Piper Grace, after just a few moments of a rest on the outside of her Mommy's tummy, was ushered into my sight.  Actually, it was 5:24.34 when she was laid on the bed which was surrounded by 11 doctors and nurses who would rival any NASCAR Pit Crew.  As they got her airway established and oxygen flowed, our new young lady turned the prettiest shade of PINK any eye has ever seen. Step One - Airway...check!  Less than 30 minutes later, we heard a report from her Cardio Team that would confirm what we have been praying for - Miss Piper's heart was operating as any normal 1-Hour old Baby would be operating. Not perfect, but her missing aortic arch - WAS THERE!

There was our KC pair, now battling emotions of being derailed by the last three months of prognosis, thinking of what to do after the 1st 6 minutes.  Again, Composure and Grace took over their thought process.  As we chattered of a Miracle (which I will now stand on) Matt and Tara focused on what Piper's next step would be.

Over the next few hours, we witnessed the train of equipment and caregivers as Piper was relocated to the NICU, and a plan was established to expand and strengthen the little lungs our girl would need to operate at max-efficiency to get her to whatever the next step is.

All the time, our KC pair took in a calm steady stride.  As I look back on it now, I can't remember seeing Matt or Tara surprised by any of what we were seeing. I guess all I can say is GOD is good!  I know the days will grow very long before anyone can state Piper is out of the woods but, I know what we saw.

In reflection, like we said before the 4th of August.  I can't imagine walking this path with anyone but you.  As for Piper, The KC Crew did everything humanly possible to give her the best shot at life.  Then I believe our LORD made sure she would have a good heart in which to fight this battle.  As Matt & Tara gear their life to meet the needs of our newest family member, Prayer will be as much or more important.  LETS ROLL!!!!!!!

I love you all,

Dad, Grumpy, Dodo 

***

I couldn't have explained my feelings the day of Piper's birth any better than above. What I can do, is give you a bit more clarity of where we are right now:

• Upon ECHO after delivery - it was discovered that Piper's aorta was in fact in tact, and not too small to function. (This was our bomb diagnosis....and praise God the little aortic arch was smushed and hiding behind some anatomy shifted by her diaphragmatic hernia.) Her heart is able to sustain her body as everything else needs to heal.
•  Piper will now deal with, for an undetermined time, trying to stabilize her oxygen/CO2 saturation in her blood on only one "semi-good" lung. The other will not function for a while due to non-development/being smushed due to hernia. She has done a great job remaining stable thus far...and we will be watching these numbers until surgeons agree upon an acceptable oxygenation to take her to surgery. Knowing most babies get a tad bit sicker after having a major surgery, like repairing a diaphragm, they want her to be on as LEAST amounts of lung assistance before making this decision.
• Repairing her diaphragm is step 1. Even after this repair, her lung function will be the same...until it's not. Only she will be able to tell us when her lungs are ready for no ventilator assistance. Repairing her diaphragm fixes her body and helps her strengthen her fight, but we will be watching these lungs in the NICU for quite a while.
• Future steps, like step 2, 3, and home? Off the table for discussion right now. Living day to day being thankful our little Pip Squeak is alive is where we are right now. Are we "out of the woods?" NO. We have just sent Piper Grace, with the best medical team, prayer warriors, and baby heart, into the scariest part of the woods. There is no telling how long this journey will be.

For now, Matt and I are establishing a NICU visit routine with ourselves and with family, enjoying resting at home with Tallan, and taking every day as it comes. If Piper's oxygen has looked good all day, we call it a success. That's it. This will be our lives until a surgeon calls to say it's go time for step 1. And we are totally ok with that. We are in no hurry. God has this, and little miss fighting Piper will tell us when she is ready. 

Thank you all so much for your love and support. We clung to your prayers as we cried, terrified when it came time to push Piper into this big world of unknown. We still cling to our faith and hope that Piper is teaching us all something. "Be still...and watch me mom." Let's all be still, and watch God work through this 7lb 15oz, 21in baby girl.    

Mom's 1st Look 

Tallan meeting her little sis 

Mon, Aug 11th - 1 week old!