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.