Wounds & Battle Scars

I have resisted blogging lately, because frankly, I have no idea where to begin. I have realized that I wait to blog when I have some exciting news, some Piper progress to share.
Right now, I don't have any, and I've decided that's okay too.

I've been thinking a lot about our journey thus far, and the other day, while looking at Piper, I thought, "Wow, what a story she will tell about these scars." I sat there with her, and vowed to be the mom who celebrates her scars so she will wear them with honor and never be afraid to share her story with others. Battle Scars are a badge of honor, a sometimes physical testimony of what we have survived and overcome. Scars imply that the wound has healed...and you've lived to tell about it.

Me? Right now, I wish I had scars to show.   I don't.
I'd give ANYTHING for this journey to finish, heal, and scar. Currently, I am wounded. As a mom, wife, daughter & friend...wounded. My soul was cut open the day I gave birth to Piper Grace. Faith, Hope & positive progress allows my wounds to scab over and the pain to subside; but fear, reality and problems along the way tear away at my healing; and leave me raw once again.

This journey has been such a roller coaster. Piper has made such progress, and when she does we celebrate and hope! She's also had her fair share of setbacks, which hit us hard with the reality of having a medically fragile child.

With Piper trached, the journey towards home requires a seemingly short list of accomplishments:
  *Wean off Nitric Oxide
  * Full Feeds
  * Wean narcotics

We gear up to tackle this list...and realize that Piper Grace is having a terribly hard time coming off Nitric Oxide. We have actually switched to a pretty intense drug called Flolan, to treat her pulmonary hypertension and help wean her off nitric. Her recent echoes have shown great progress in her pulmonary pressures!
This progress should result in a transition to not needing the nitric gas. However, it has not, and Piper's team has no idea why. We have tried and tried and tried to get her off this nitric, and while she can handle some time without it...she cannot give it up completely.

There is no data that explains why she can have forward progress in most of her body systems, but not be able to wean off this gas. This is worrisome. So much so that a couple weeks ago, we met with Piper's team to discuss her nitric dependency. Her team worries that, if her body will not come off of nitric oxide, we are at a standstill, and any other progress with Piper is....icky word......futile. Progress with feeds, fluid management, and narcotics is pointless if her body cannot survive without nitric. It cannot come home with us. It led to the meeting's main question: Is this Piper's body telling us that her systems are not compatible with life? Dagger. Heart. Wound.

I've spent the last week in serious contemplation. Wondering, asking, begging to know if this story is our triumph of healing, or our testimony of having grace while losing this child. Did we fight this long and get this far to lose this battle? I know NONE of these answers, and I need to be okay with that.

All this time, we have looked to Piper first when making decisions about her care, and we will continue to do so. Matt and I have not felt that Piper is done fighting. She is progressing with managed PPHN, smiling, chatting, and developing. We see her. We feel her. We, as her parents, will know when her fight is finished. We are not giving up on Pipes!

One of many things I've learned from this NICU journey, is that I don't have to pick an emotion.
I can be pleased with progress...while disappointed in our nitric status.
I can hope this new med works wonders...and fear that we can still lose her.
I can love Piper through her progress and her setbacks. I choose ALL the emotions!

In summary, things are at a standstill, which is scary...but WE ARE NOT DONE FIGHTING!
One day, regardless if how this story ends, I will wear this journey's scar as a badge of honor, and share with all who will listen, the things that Piper has taught me.


Switching to the extreme present: Tallan Hope has been a silly firecracker lately! With her 3rd birthday, and CDH Night Event, she has had plenty of family time to ham it up. She has also gotten to go visit her sweet baby sister!
We can all learn a thing or two from watching Tal and Pipes interact with one another.

Tallan did not wonder why Piper's cleft lip wasn't fixed yet. She did not worry about the extra IV line. She didn't ask how long her last nitric trial off was or the predicted homecoming date. She didn't even ask what her trach was. To Tallan, Piper is her sister, just the way she is...and that is enough. Tallan doesn't care how Piper eats or breathes. Tallan loves that she has a sister that holds her hand, and sleeps when she holds her...and that is enough. To Tallan, Piper is not a diagnosis, a list of ailments to overcome...Piper is enough.

Please pray that Miss Pipes will decide to kick nitric oxide's butt soon. That alone, would change her prognosis tremendously! Pray for Matt and I as we juggle our frustration of this standstill with our pride of her other progresses. Please pray that little Pipes keeps truckin' along, smiling, and letting us know that she's still here fighting. We are all wounded...but we are not done.

Science Lessons & Life Lessons

Holy Frozen Frijoles Y'all!
It has been a month since I have blogged and I need to get you up to speed.

I've tried, in vain, to get more sleep this past month; which meant foregoing late night blogging. A whole lotta good that did me! I haven't blogged AND I have pretty under-eye circles. Glamorous.


The last time I checked in with you medically, Piper was undergoing a tummy procedure to correct a feeding problem. That procedure with Dr. Iqbal went smoothly, and Piper is now successfully being fed through her new GJ (gastric - jejunum) feeding tube. This tube goes the extra extra step in protecting her lungs from baby puke/aspirating, by taking her food straight into her small intestine, bypassing the stomach all together.

Lungs? Home? When? How much longer? - My word, these questions plague just about every conversation we have outside of the hospital, and I will do my best to clarify our home course shortly.

SCIENCE LESSON #1 - What is persistent pulmonary hypertension (PPHN) & what does this mean for Piper?

Infants with CDH also commonly have a very serious and potentially life-threatening problem called pulmonary hypertension. Pulmonary hypertension happens because the blood vessels in the lungs are not formed properly. In babies with CDH, the blood vessels often fail to relax normally. In addition, babies with CDH have an inadequate number of blood vessels to carry blood into the lungs. Therefore, the lungs receive inadequate blood flow which restricts the amount of oxygen delivered to the rest of the body. Further, because the heart has to work extra hard to pump blood through the tiny blood vessels in the lungs, it can eventually begin to fatigue.

PPHN can be treated in the NICU with multiple ways to help alleviate these pressures:

• Medications
• Proper Ventilation (TRACH in Piper's case)
• Nitric Oxide gas
• TIME for lung disease to heal = PPHN alleviating itself

Piper Grace is receiving ALL of the above, and her PPHN, which was her most life threatening symptom at birth, has slowly come down to a more manageable state. Out of all treatments, TIME with healthy lungs is pretty much the only thing Piper needs at this point (hence the decision to do her trach procedure.)

SCIENCE LESSON #2 - Pulmonary Hypertension can come into crisis when exacerbated!

On Piper's slow road to healing and home, we have ran into a couple big set backs that scared the living poo out of us! Piper getting sick in November, and again in January is enough to throw her tiny body back into a life and death fight. 

WHY? 

ANY little stress stimuli can exacerbate PPHN and shut Piper's body down for good. Game over, baby too sick, body too tired, done. Scary situation after fighting so hard for 6 months, right? 

Things like a tummy bug, respiratory virus, aspirating pneumonia, teething, & surgery can trigger PPHN crisis, and we are constantly on high alert for this stimuli. 

We are so so so fortunate to have awesome nurses and docs that are QUICK to recognize Piper's signs of stress and treat her symptoms before her body becomes too tired. PPHN is always in the background on this journey towards home...and TIME is the only treatment that will eventually take this scary term out of Piper's equation. 

WHEW! Did ya get all that? You now have your honorary doctorate from reading all that mumbo jumbo! Hopefully that answers the question of, if Piper seems completely healthy and doing well, why our team is extra careful and slow with changing things that could stimulate crisis. 

That brings me to LIFE LESSONS. 

Matt and I have been so proud of Piper's progress and, knowing the medical steps to get to home, can't help but get a bit antsy as we near the final stages of hospitalization. After months of improvement, and positive changes, Piper got a bit sick/out of sorts around mid-January with PPHN crisis. This THREW ME for a loop, and I was taken aback by my emotion.

I realized in one NICU visit, that no matter how great things are going, we are NOT out of the woods. I had let my mommy emotional guard down, I had buckled into trach care training and home going logistical talk, and then was slapped in the face by this (in the scope of things) minor setback. I lost it. God reminds me that we are on his time, Piper's time...BE STILL, woman! 

I look back to July 2014, at my words of preparation for birthing and losing Piper. We were as emotionally prepared as we could be, and told ourselves, every minute - every hour - every day that Piper lived was a gift from God to cherish Piper before she died. 

Along the way...Piper lived. Piper thrived. Piper became ours. The time we said we we'd feel blessed by, turned into months, and we began to believe she would live. She was ours. Ours to take for granted. To selfishly be frustrated at timing was taking Piper's astonishing fight for life for granted. 

January's setback reminded me of my earlier preparations, and why impatience is something I cannot afford to grovel with. Frustration at our pace of progress should not be tolerated. I was prepared to lose this child....and I didn't. I have her. She will live. I will be frickin thankful for these woods! (Cue that Taylor Swift song!)

That being said, we have had a great February with Miss Piper. She has weaned on her trach vent settings and pain meds, resumed feeds after being sick, and her echos have showed great improvement in her pulmonary pressures! If you'd like to see some more medical speak, here's what we are thinking for Piper's coming home to-do list:

• Reach full feed amount
• Get OFF Nitric Oxide (NO) (for my nurse pals: she's on 0.5ppm! Come on, Pipes! Give it up!)
• Once NO is OFF, she will do about 1 month of home vent practice before discharge
• Wean narcotics to home manageable state

That's it. Seems like a small list, right? Only Piper can set her pace on completion of these tasks, and we will gladly BE STILL and wait. Silly goose like to keep us guessing!

Along the way, plastics might decide when they're willing to do her cleft lip repair...AND cardio may decide she's stable enough to patch her heart holes. Geeze - I'll save those for another blog. 

We are happy to report that Piper is the happiest girl in the NICU, smiles at everyone, and is the D Pod Hall monitor as she sits in her swing and watches everyone walk by. She has a keen fashion sense, likes the one shoulder look, and is a whopping 20.2 lbs! She has been doing great sitting up with PT, grabbing and tracking with OT, and singing (let's face it she's an alto) with Music Therapy! Have I mentioned how awesome Children's Mercy is? Awesome!

PRAYER THIS WEEK - Get that darn Nitric Oxide weaned OFF!!!!! That would be a huge step, and is the only thing keeping Piper from switching to the vent she'll come home on. 

We love you all, and are so glad to still have your support and prayers. Y'all are our proverbial "flashlights" for this long journey through the woods. What brightness each of you bring. We are so grateful.