One Week Old

It is past midnight as I write this so she is officially a week and one day, but this is the 1 week old report from Wednesday...

Today Paige graduated from the repogle tube in her mouth to a smaller, less intrusive NG tube in her nose.  Her sweet nurse knew I would want pictures from the moments between tubes when her face was clean and tubeless so she waited for me to get there.  Here's cute Paige's face... all of it, finally revealed :o) 

Her new tube marks good progress, so I can be happy about it.  The new tube is in preparation for (hopefully) getting her first tiny feeds.  In the coming days she will get pedialyte through her NG tube to see how her body responds.  If she can tolerate it they will move to half breastmilk/half pedialyte and then eventually breastmilk.  Feeding is a huge deal so we are really excited to see how she does and we are hoping she can put on a few ounces with the "feeding" so that she can graduate out of an isolette and into a bassinet.  She has to get back to 4 pounds before she can do that and she is currently about 3 lbs 13oz.  I can't wait to stare at her directly instead of through the plastic isolette... and have a few more pictures turn out because they won't be through the plastic.  Okay, silly reasons, but it also is just because it means progress.  Temperature regulation and moving to a bassinet are more tiny steps towards coming home.  I just can't wait to get this sweet bundle all healthy and HOME.  I miss her every minute I am away.

Today was such a sweet day.  I loved seeing her face and helping clean her little mouth and cheeks.  She's just so precious, I can't get enough of her.  She had her 2 longest alert periods today and all through the tube switching and the time I held her afterward she was alert and looking around.  Then she drifted into the sweetest light sleep and kept having those dreamy little baby smiles.  I don't care if they are involuntary... those smiles melt my heart.  She is so much cuter than pictures capture and I just love staring into her eyes or watching her sleep.  This time is so special and while I do wish she were healthy and home, I also recognize how precious this time is that I get to enjoy this infant in the quiet solitude of the NICU.  I just feel blessed.  No other words describe it.

Amazing Day!

 My heart is so full today! This morning we got the news that the surgeon had visited Paige in the night and decided she was ready to be taken off the ventilator in the morning.  So we all headed to the hospital in the morning to see our sweet girl breathe on her own once again.  She handled the transition so well that the nurse gave us permission to hold her so we got to have her in our arms for the first time.  There is something so precious and indescribable about holding an infant for the first time.
 

 

We are so in love with this girl! Its hard to be at home without her, but it is also hard to be at the hospital without Madi and Shayne so we will keep working on finding a healthy balance.  Its amazing how this precious little bundle can fuel your soul though.  It is quiet and peaceful in the NICU and always hard to leave but I walk out energized and invigorated (well, sometimes physically exhausted but my soul is charged.)  I'm so grateful everyday when I am there and my heart feels like it is overflowing all the way home.  We truly have been so blessed.

Paige is really exceeding expectations.  Babies with gastroschisis have their list of goals and the order they will happen, but the timeline is always up to the baby.  Paige is amazing everyone as she has already started working down her checklist.  Today she checked off the ventilator! Wahoo! And the other huge one... She pooped!  Most people don't celebrate that, but for a baby with gastro, that is HUGE.  That means that her bowel is (at least partially) functioning.  This is really early for her to already have a bowel movement, so we aren't out of the woods for bowel function, but that is really encouraging.  It often takes 3 weeks for a first bowel movement, so this really is incredible.  Again, we just feel so blessed.  I see the Lord's hand in orchestrating the time of her arrival and I think her coming at 33 weeks instead of the previously planned 36 or 35 has made a huge difference.  Heavenly Father knew the exact window for her when she would be developmentally mature enough, but before damage began to occur on her bowel.  There were many adhesions on her bowel but they were just getting tight, not quite constricting yet.  The timing was inspired and I am so grateful to have had doctors I could trust and have great confidence in.  Heavenly Father hears and answers prayers. 

Thanks for following our story and continuing to think of us.  Hopefully we can keep the good news coming :o)

Introducing...

Introducing...

Paige 
 Elizabeth
Miller



Born Wednesday, September 19th, 12:14pm
4 pounds 2 ounces and 16 inches long

She has a journey to travel before she will be in full health,
but we are confident that with the enthusiastic help of Doctor Shayne

 

  and the tender, loving care of Madison

(Oh, and some more love from these guys)

she will be home with us when she is ready.  She is truly and angel and bringing even greater sweetness, tenderness and love into our family. We love her dearly and feel so blessed to have her in our lives.
 

She is here, she is safe, and I need sleep

Our sweet baby arrived at 12:14 today weighing 4 pounds 2 ounces.  She soon had surgery and did really well.  The doctor was able to get all the bowel in with a primary closure (meaning no silo and less risk for infection).  We feel so blessed and grateful. 

The day has been exhausting, but we have been filled with peace and calmness through what could have been tremendously stressful.  We are amazed at how well she is handling everything and we know she will continue to thrive and improve her condition.  She has a long way to go but she is doing great.  There is no official timeline for milestones with a baby with gastroschisis, so we kind of just work in a one goal at a time.  Already she is improving her blood sugar regulation and temperature regulation.  Our next major goal will be for her to be able to breathe independently and not need the ventilator.  After she was born she was breathing 95 -100% on her own which is incredible. As expected, they intubate for surgery and will remain intubated due to pressure on her diaphram from the new addition to her abdomen and also the sedation.  Hopefully within the next few days she will get back to breathing on her own at which time we will get to hold her for the first time.  The anticipation of that moment is very tender to me now.

I really need to get to bed, but I thought I would fill everyone in.  Thank you again and again for your thoughts and prayers.  We know He hears! 

Here we go...

All right, there are at least 7 of you who read this, so these updates are for you...

Well, it is after midnight, so today is the day.  I'll be in the hospital in less than 6 hours where they will get me all hooked up to my IV and start that lovely Pitocin flowin through my veins.  I think anxious would be the appropriate word.  I am excited, but there is certainly some anxiety too (hence I am awake again).

It seems I have still failed to fill some people in on the situation so here is the I-need-to-get-back-to-bed-summary and you can fill in the holes with your own research or just wait for updates.  (Please don't pay any attention to my grammar, I should be sleeping and so this is a mind spill not a refined document.)

At my 18 week ultrasound the doctor found that our sweet baby has a condition called gastroschisis.  That means that in her development something went wrong with the formation of her abdominal wall and there is a defect site where it is not closed and some of her bowel is outside of her body.  We are fortunate in that it is only small intestine out, but it seems that the quantity is increasing.  To prevent damage to the bowel (resulting in loss of bowel and long term complications) I will be induced at 33 weeks.  This little lady will have her first surgery within a couple of hours of birth and we will learn a lot more about the condition of her intestines after birth and that first surgery.  Many babies have only that first surgery, but we are choosing to be prepared for more because I prefer pleasant surprises.  She will head straight to the NICU after birth and then to surgery but hopefully we'll get a glimpse of her sweet face somewhere in the chaos before surgery...if not, we will have MANY hours in the NICU to come with ample opportunity to stare helplessly as we hope she progresses, grows and knows we love her.  There is no timeframe for how long she will be in the NICU (so stop asking :o) it could be weeks or months and only time and progress will tell.  We'll keep you posted with stats and hopefully you won't get sick of this one topic blog that will exist for a while. 

So tomorrow is a big day.  We are so grateful for prayer and knowing that we have a loving Heavenly Father who cares for us and our baby.  We know she is in His hands and that that is the safest place to be.  Thank you for all the prayers you have and will yet say in our behalf, we truly feel the power and peace that comes from those prayers and your great faith.