Maya Journey: Life with Maya

Boy do I have a lot to catch up on!  I need to write about Maya's birthday and pretty much every moment since, but right now I am going to talk a little bit about bringing Maya home.
Maya's "nursery" went through many phases throughout my pregnancy.  For me, ESPECIALLY in the first trimester, I mainly feel deathly ill, and not the cute kind.  So I try and do things to remind me that it is a baby that's making me feel awful, not just a parasite:)  The first phase was carrying up the changing table from the basement and hanging the cute canopy over it that we have used for all of our babies, as a reminder to myself that another small person to love and adore will come out of this, and of course by this I mean my glorious dry heaving emotionally unstable body.  So then we got the news that our baby had a very low chance of survival.  The second phase was putting the changing table back in the basement.  Then in the process of dealing with every stage of grief back and forwards eighty times at some point I dragged the crib down the stairs and set it up in our bedroom with a few baby girl items I courageously purchased (one outfit) and the teddy bear the doctor gave us with Maya's heart beat in it, and the blanket I learned how to crochet.  Then phase fifteen I made Nate drag the crib back up into the spare bedroom.  Phase 97 I actually set up the room like a real, no kidding nursery for Maya.  It made me feel both hopeful and despair.  This is where we will put our sweet baby girl!  This is going to need to be packed up "when this is all over."

 

So you kind of get the back and forth we went through a million times about what may or may not happen.  Really, all of our doctors appointments and medical committee meetings were all centered around how we wanted things to go at delivery.  By this I mean, how far do we want to go with resuscitation, do we want this or that done right away, do we want Maya given to me immediately, do we want them to work on her while I am holding her, do we want to have her blessing immediately, should we have NICU docs or pediatricians present...the list goes on, and really it all was built around delivery.
Once Maya was born, and ALIVE (!!!!!), well I guess we hadn't figured out much after that! On our birth plan the overall goals were that we wanted Maya to be born alive (yes, that was a documented goal), to have the boys meet her, and bring her home as soon as possible.  I honestly did not think she would come home with us.  So after a typical length stay at the hospital we brought our family of six home with us!  Maya was too small (weighing in at 3lbs 15 oz) to even ride in a normal car seat so she gets to ride in everyone's dream...a car bed!  One more thing I did not know existed.

(I'm holding Maya in the car bed).

We drove home from the hospital to be met at our house with the hospice team and a delivery of medical equipment including oxygen tanks and this other thing I can only identify as the sucky thing (not just a clever name), and various meds, all of which made available for the ever looming JUST IN CASE (I want to make a joke here, but this is actually does come with a terrible looming feeling of soul crushing grief...especially when I let fear in).  

It has now been two whole weeks with Maya home!  When we first found out about her diagnosis Nate gave me a priesthood blessing, and in that blessing he said that Maya would surprise doctors, and that blessing has proven to be true over and over again.

Maya is a scrawny little squirt but as that popular NICU quote goes, she really IS fierce.  To give you an idea of how tiny her bum is check out Maya's diaper vs. our monstrous 2 yr old's diaper.

Her diaper is still a bit on the big side for her.

I want to write about every moment since she has been home, but I can probably sum it up by saying we are snuggling her constantly, the boys are always kissing her, and she is always wrapped in about 5 different pink blankets.

We did go to the Cardiologist who confirmed (as was suspected by multiple echocardiograms while Maya was in my tummy) that Maya is facing heart failure.  This could happen in days or weeks from now and will be her ticket back home to Heavenly Father.  

We didn't think we were going to have more than moments with Maya and really we have gotten everything on that epic birth plan I mentioned, and we have seen so many miracles and tender mercies, but as is typical of me...I just want more.  So lots of prayers are being uttered and many tears shed, but when we focus on the Lord, I can feel the Holy Ghost lifting my understanding and it feels slightly less soul crushing.  That is all I may say about that for now.

My favorite time of day is the morning.  Maya sleeps on my chest, we wake up and the sun is shining.  

I change her tiny diaper as she squeaks and squirms and I dress her in teeny tiny little pink onesies and stretchy pants, oh how I love to do this.  She also wears little booties and I snap her onesies over her little pants so she looks like she is ready to mousercise...so cute.  Maya acts like the rest of our babies did, squirmy, squeaky, cries when she is hungry, and shoves her fists in her mouth looking for something to eat.  When it's time to nurse I use a pump and then Maya latches onto a 6ml syringe.  Maya has gotten so used to her syringe's that when she is hungry she forms her mouth like she is sucking on an invisible straw...again ridiculously cute.

Maya does seem more alert than our other babies, Nate and I have contemplated this as a heavenly gift.  Maya opens her eyes and responds when we speak to her.  This time is such a treasure to us.  Maya opens her eyes and her Daddy leans in and says her name and she perks up and fixes her gaze on him.  This is especially amazing considering her condition and that doctors were not sure her brain would function enough to tell her lungs to breathe.  Her father speaks and she hears.  Gosh we just love her so much.  Her hands are tiny and formed in what I guess you could call permanently clenched...nothing is more beautiful than her tiny little hands.  

We feel her strong spirit and it is such a contrast with her tiny, vulnerable body.  Frequently I think about how Maya is not her body and how amazing it will be to see her with an even more perfect resurrected body. 

"I testify of the holy Resurrection, that unspeakable cornerstone gift in the Atonement of the Lord
Jesus Christ! With the apostle Paul, I testify that that which was sown in corruption will one day be raised in incorruption and that which was sown in weakness will ultimately be raised in power. I
bear witness of that day when loved ones whom we knew to have disabilities in mortality will stand before us glorified and grand, breathtakingly perfect in body and mind. What a thrilling moment that will be! I do not know whether we will be happier for ourselves that we have witnessed such a
miracle or happier for them that they are fully perfect and finally 'free at last.'" (Elder Jeffery R Holland)

I will leave you with that.  Thank you for all of the prayers and love, we really do feel it.
Until next time...