Almost 4 weeks

Miss Paige will be 4 weeks old tomorrow and here's the scoop.

Saturday Paige got to start nursing and also had her PICC line (like an IV) removed.  She is no longer on any medication or supplemental fluids. WooHoo!!

The only thing that stands between Paige and going home at this point is weight gain.  She has been teetering around the same weight or losing a little in the last few days and if she doesn't start gaining they will put the NG tube in her nose again to get more calories to her tummy.  Her current problem is that she is burning more calories than she is consuming so she needs to increase her efficiency and intake.  She's as cute as ever and we just can't wait to get her home so if you need a purpose for prayer you can keep praying for this sweet miracle.  It's such a joy to be with her and I feel so blessed that I have had so much time alone to snuggle Paige in the NICU but I miss my kids and I miss being home.  I'm grateful for competent care and a safe place for Paige to learn to thrive but I also miss home and family.  Her recovery has been amazing and much faster than anticipated by me or any medical professional and as a family we are tremendously grateful.  We are so grateful for her health and growth and speedy recovery... now we're just hoping her appetite and efficiency will improve. We're so proud of Paige and what a trooper she is!

3 Weeks

 Paige is 3 weeks old today and boy has she grown, changed, and done some amazing work! 

I am so behind so here is the update timeline... (mostly for my record)

Fri Sept 28 - X ray of belly shows she isn't quite ready for "food"

Mon Oct 1 - Re X ray of belly, still not quite ready

     (we're looking for air bubbles through the entire coarse of intestines)

W Oct 3 - Re re x ray of belly shows enough air that Dr decides to start Paige on 15 mls (1/2 ounce) of 

      Pedialyte every 3 hours to see if her tummy can process it - with the intent to move to half Pedialyte, half 

      breastmilk Friday

Th Oct 4 - Tummy is bloated so she continues on Pedialyte with no milk

F Oct 5 - Tummy looks better so she gets the go ahead for half and half (still 15 mls)- does great all day

Sat Oct 6 - Gets the go ahead for full strength breastmilk- does well most the day but then has a choking 

       incident so she gets demoted to half and half again

Sun Oct 7 - Half and half - does great

Mon Oct 8 - Full strength breastmilk and because she's been doing so well with her previous feeds and 

       taking over 95% by mouth they remove the NG tube!!

Tues Oct 9 - She tolerates so well they up her feeding to 20 mls of milk every 3 hours

Wed Oct 10 - Up to 25 mls

Our goal is 45 mls so she is making amazing progress.  There are still hurdles, but she is doing really, really well.  We are so proud of her and truly recognize her recovery as a miracle in our lives.

We love her!!!

Open Crib for Paige

Friday, Peanut weighed 4 pounds exactly so she got the bed upgrade.

We played a little dress up because she is so much more accessible.

We enjoyed some sister time today and Madi even got to help with Paige's bath.  She is such a sweet, loving sister and wants to help with everything.  Today she said, "I think I better watch so I know how to do it when I have my own babies."  She's mother hearted and will be an amazing mother in MANY, many years.

 

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)