A Birthday

There was a birthday today. 
My baby's birthday was today. 
It was quiet and solemn around the Jarvis house today; not because festivities were limited due to COVID distancing or protests, but because my baby is not here.  He died - and I'm still pissed. 
I've discussed with Matt recently that I have not blogged a lot about Jett Matthew.  There wasn't the months and months of updates, of pictures, of warning...to write about and get off my chest. No - this time, there was a warning, his birth...and then he was gone. 
I haven't known what to share about Jett; because his loss  feels so much different than Piper's.  What I can share is real & raw (duh - have we met?)...and angry. I've realized I have been afraid to share my anger with you. I am so proud of the fun and love and giving that we choose to share with Grace Blankets and our family. I try so very hard to keep things positive; but for now, love me through my anger, please. 
I remember this 1 year birthday mark with Piper. The outside world has turned for 365 days, the distant friends may assume that time has softened the blow of infant loss; but NO, my momma heart is screaming in pain:  "STOP TURNING - STOP MOVING ON - THIS. JUST. HAPPENED. WE ARE NOT OK - ACKNOWLEDGE THIS HUMAN BEING....IT HAS NOT BEEN A YEAR OF HEALING! STOP WORLD....Stop and remember him. Please. Remember he was here and lived."
Time is a shitty shitty thing.  I speak from experience when I say, yes, eventually time makes pain less acute.  I feel we are in that space of time since Piper died.  That first year though - time stands still for the Jarvis family. Why the fuck do I have to know this from experience? I am so angry at the repetitiveness of this! Ya'll! 
My deepest worry when preparing for Jett's arrival, was that his short time on Earth would make him less significant for others, than Piper. (I know any mom that's experienced a miscarriage, a late term loss, stillbirth...understands where I am coming from.) I SEE YOU, mommas. Your babies are significant - regardless of their time here. 
Jett would have been 1 year old today; and I am still struggling with the lack of closure and redemption for our family. I am beyond grateful to be a part of a special needs, NICU mom, KC, CMH mom, loss mom community...and I watch other families walk their own journeys of hardship with their babies - BUT there always comes the redemption stories. The rainbow babies. The full term babies. The babies that enter these families lives and heal old wounds. I am so happy for these stories...but I am still so sad that they are not mine. We had no such redemption story. No baby that came without fear and pain. No baby to snuggle without counting the minutes until they were gone. I am still pissed. 
Yes - we know the countless outside the box options of continuing our family.  For now, try to not fix this - and just hold space for Jett right now; and pray for our family. We continue daily, with the goal of being open minded, pure in heart, and led by God for our next steps...BUT also with the notion of being perfectly content and ok with our family as is. 
We have loved the support and outpouring of love this year, and I have had countless conversations with others offering advice and help with family planning. I have realized we are all just trying our best to fix each other's pain, to make it sting less, to offer solutions that can help solve a problem.  I urge you to step outside your comfort zone the next time you are around someone in pain. Do not offer well intended advice to make yourself feel better in the silent moment. It's awkward  - but allow someone to be in pain. Hold reverence and respect, and sit with them in pain. No solution necessary.  It's hard...but YOU will be the support they remember. 
If you have read this far and haven't chalked me up to being a bitter asshole - THANK YOU.  Again, I am so proud of our little family, our little cause, and the positivity we try to spread out in the world....but I needed to be real for a sec. It's still hard to see happy families. To watch siblings play. To witness redemption stories....and not crave them with every cell in my being.  This is loss. This is grief. 
I am a mother of 3, I viscerally felt that there was someone missing today. Someone important. His name is Jett Mathew - and he would be 1 year old.  There was a birthday today.    

                          (all photos cred: Andy Pollard)

Nose tubes, IV's & Pain Meds - Oh My!

Howdy!

First of all, HAPPY 6 WEEKS to Miss Piper Grace!
Time has been flying by as we watch this super girl thrive!

These past 2 weeks have been pretty chill with Miss Piper, but we've made quite a few steps forward in that time! For a couple weeks, docs have been weaning down the pressure settings in her CPAP nose cannula. The less force in pressure = the more Piper is doing on her own. This process also coincided with her neonatologists deciding to remove her pain med/sedation IV drips and switch to medicine by mouth (i.e.her nose feeding tube.)

With the above changes happening, staff took things slowly, as to not upset our little lady with lung changes as well as drug withdrawal. Slow moving is fine with us...we'd rather not have our little junkie out of sorts!

Removing the IV pain med/sedation drips means NO IV's! Not a single one! No ouchie in her arm, no ouchie in her leg, no ouchie on her noggin! NO IV's! Wow! This has allowed for better snuggles and movement while mom and dad hold Pipes. (For my nursing friends - Piper's meds for the last week have been morphine and ativan alternating every 3 hours by NG tube.)
*Side note: with this ativan making her sleeeeepy, I really haven't gotten a chance to try non-nutritive breast feeding. All in good time. *

Piper has increased her feedings to 72mL of breastmilk every 3 hours as well! Bigger feedings, along with some drug withdrawal as her med dosage changed, created a bit of a pukey situation for a couple of days...but Piper quickly adjusted and has been doing well not spitting up her meals & meds since. This was to be expected, and nurses have made sure she is keeping her weight up (or increasing!) One point for mommy - they have not had to fortify my breast milk with any formula for extra calories! (I must be a big boobin' deal!)

Over the weekend, Piper proved comfortable enough to not even need her CPAP nose cannula anymore. She has moved down to an even smaller nose cannula, with no positive pressure needed! This nose tube allows us even MORE movement freedom, as well as getting to see more of her face! (Less taping!) Her heart rate and oxygen saturations have held strong even down on this smallest cannula. YAY PIPES!

Plastics, aka the Cleft Team, consulted during rounds last week. They've tentatively made a plan to meet with us at 3mo to discuss cleft lip repair after we've already gone home. (This gives me a tiny assumption that we will be home before 3 mo???? Whhhhhaaaaat? Fingers crossed.) After lip repair, surgeons generally wait until 1yr of age to repair palate. That's all we know for now, and we'll know more when we meet up with them in an outpatient setting.

Remember when I said after weaning to smallest nose cannula, Piper would try eating by mouth?
Well, Occupational Therapy met with her today, and will continue daily, to train her on a special cleft palate bottle. This is a very patient, slow process, but she took in 8mL of bottled milk today by mouth, and that's a great start! This is the next big step in our coming home process. Staff must be confident that she can get her feedings in by breast or bottle before considering a home coming. Big big prayers about this, please! Physical therapy also came by and stretched with goober girl (she's a yogi already!) She was pretty worn out by the time we saw her at 5pm. It's hard work being awesome.

This week we will continue with bottle training and thriving on her new small nose tube. Also, docs have officially set a weaning schedule for pain meds and sedation that will start tomorrow, and continue until she is off those meds completely. Pray for her comfort during this time, and that she kicks drug withdrawals butt! You will already notice in pictures posted, that her alertness is much more apparent now that her sedation drips have been removed. Her big baby blues are sure loving watching her mobile, and checking out what mom and dad are doing!

That's about it for now! We'd love your prayers for continued comfort, great oxygen numbers, bottle feed success and for no icky germs sneaking into the NICU during this cold & flu season! Still can't believe I'm writing about Piper not having a breathing tube. Those lungies amaze me every day! Praise the Lord for all the successes we've celebrated thus far!

Piper's new nose cannula! Less tape pulling our eyeballs down!

Snuggle bunny

**Photos below courtesy of Children's Mercy Marketing/PR - THANK YOU STACIE!**