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.  

  

Here's to Y-O-U!

WOW. You guys rock!
We set out to provide some bed change blankets for the 75 NICU bed spaces; and the results were above and beyond what we could have ever expected.

God is working through each and every one of you; and let me tell you about all the warmth you have provided this hospital!

• GRAND TOTAL of 930 blankets!
• From 119 different donors
• From 62 difference cities
• Mailed with love from 11 different states!

AMAZING!!!!!!!!
To preserve donor anonymity, but also explain the scope of your love, I'll proudly give shout outs to the fun fabulous places that sent fluff our way:

• Abilene, TX
• Amarillo, TX (2)
• Amistad, NM (2)
• Arlington, TX (2)
• Bedford, TX
• Blue Springs, MO
• Burleson, TX (2)
• Canadian, TX
• Chula Vista, CA
• Claude, TX
• Dalhart, TX (7)
• El Dorado, AR
• Fayetteville, NC
• Ft. Worth, TX (4)
• Garden City, KS
• Garrison, TX (2)
• Gladstone, MO (2)
• Grandbury, TX
• Grapevine, TX
• Harrodsburg, KY
• Hewitt, TX
• Highland Village, TX
• Irving, TX
• Katy, TX
• Kansas City, MO (15)
• Kingwood, TX
• Leawood, KS (2)
• Lee's Summit, MO (2)
• Lefores, TX
• Lenexa, KS
• Lillian, TX
• Lipan, TX
• Lubbock, TX (5)
• Mansfield, TX (14)
• McKinney, TX
• Mission, KS
• Nacogdoches, TX
• Newberry, FL
• North Richland Hills, TX
• Oceanside, CA
• Olathe, KS (2)
• Overland Park, KS (8)
• Paola, KS
• Parkville, MO
• Pearland, TX
• Prairie Village, KS (2)
• Richmond, TX
• Rockwall, TX
• San Antonio, TX
• San Augustine, TX
• Seabrook, TX
• Seagoville, TX
• Seguin, TX
• Seymour, TX
• Spring Hill, KS
• Spring, TX
• Stewartville, MN
• Weatherford, TX
• Wheeling, WV
• Wichita, KS
• Winters, TX

Again, I am in AWE of your love and kindness; and am incredibly humbled by your support. I've heard from doctors, nurses, administrators and chaplains who are so so grateful for the love sent with these blankets.

Fleece tie blankets were walked around the NICU and given to parents with small babies in isolettes.

The majority of blankets will be laundered and dispersed throughout the hospital for linen closet stocking of NICU, PICU, and patient floors.

Social Work has stocked their supply closet as well, to be able to provide a very special blanket to a child or family in a time of need.

Up at Piper's crib the other day, I ran into a chaplain, who thanked me for our blanket drive. She had had the privilege of baptizing a small baby in the NICU, and presenting her parents with one of our donated blankets, that was embroidered with the word "Blessed." BE. STILL. MY. HEART!
You just thought you were covering beds...but your donation just covered a new baby with the faith and love of baptism. Again, WOW.

Thank you seems like such a small phrase to use at a time like this...but it will have to do.

THANK YOU for taking the time, over the holidays, to buy/make & mail in blankets.
THANK YOU for thinking of others with your donations.
THANK YOU for the love sent along with prayers for these babies.
THANK YOU for proving that this world still has people who will lean in and support one another.
THANK YOU for being our prayer warriors...and allowing us to lean on you.
THANK YOU for loving, and crying, and being still with us! THANK YOU!!!!!!!

My wish is that you feel the warmth that your blankets have provided in your soul. You made a difference, and we will never forget it. So right now, as you read this, take a moment, stop what you are doing, open up your arms....and feel the love and warmth we send right back to you.
You. Are. Awesome. We love you all. Feel the warmth!

Piper's Plan

Piper Grace the fashionista!

Whew! 

What a busy busy holiday season! I feel like we've been crazy busy since Thanksgiving! Grace Blankets came in IN DROVES (more about that in my next blog), Piper's story officially aired on TV, and her and I graced the cover of our local newspaper! We are officially DIVAS! (Matt says this is not a new development...but what does he know!?)

With all the hoopla of preparing for the docu-series and getting blankets organized for delivery, Matt and I have been patiently waiting to update you guys about our next steps with Piper's hospital stay. Please bear with me below, as I will try to explain, to the best of my ability, what we are planning on to get this little star home! 

Piper was doing OK on her oxygen, and weaning down on drugs, when she kind of reached a plateau in her nose cannula settings. We, along with her NICU team, asked "Is this still her body healing from lung injury caused by CDH?" or "Is this due to her having a couple (patchable) heart holes that are ready to be fixed?" We needed to get over this hump, and we needed to confirm how we were to proceed with her care. Heart or Lungs? Fix holes or go home first? Tracheostomy?

Pipe's team decided to proceed with a heart catheter procedure to study how her body was doing with the holes in her heart (VSD & ASD: ventricular septal defect & atrial septal defect), and how her lungs were processing oxygen as they healed. (This is why she was intubated in pictures...all standard procedure for the heart cath.) The results of this study would tell us which symptoms trumped priority during this hospital stay, and guide our home course. 

The cardiology team concluded that the plateau Piper has reached in the oxygen weaning process is still due to her lung injury from her diaphragmatic hernia; and the holes in her heart can be placed on the "back burner" for repair at a later time. Lungs....that is what we will concentrate on. These results shifted our care to the NICU's CLT: Chronic Lung Team.

The Chronic Lung Team of doctors and practitioners have a few tricks up their sleeve to beef up baby's lung function and get babies HOME, stable, and on the support they need. They assessed Piper, and came up with a few options to try in order to get her lungs in shape for the journey home:

• 10 day steroid course to improve lung function
• inhalant meds added to heal lungs
• move her feeding tube (to trans-pyloric) to decrease risk of pukeyness/aspiration 
• Tracheostomy - to go home on a vent for however long it takes for lungs to heal

We have accomplished the first 3 of the list above...and this momma was going to fight that last little bullet. Why trach my baby when I have seen her breathe successful with just a nasal cannula? Nope, I'm fighting that. Nope.

Being a stubborn Texas Woman, it took me a few days, but I slowly started to process what a trach procedure would mean for Miss Piper. Earlier in the week, with her nose cannula, Piper's stats and vent support settings had been all over the place. She was turned UP on her oxygen, to our frustration, and I realized that docs were having a hard time estimating how much of her O2 & Nitric Oxide (NO) was escaping from her cleft lip/palate and not even entering the lungs! That darn cleft lip & palate was preventing her lungs from getting the gasses they needed from the machines in order to heal! Prior to her heart cath procedure, Piper was intubated, and within 20 minutes, her vent support was being TURNED DOWN! Why? - Because her face, i.e. her clefts, were taken out of the equation; and her lungs were getting what they needed without the hindrance of air escaping from lip/palate. Hmmmm.

Driving home from the hospital that night...EPIPHANY! We need to take her face out of the equation. Duh! Stop being so stubborn, Tara! (yea, I talk to myself while driving, but who doesn't?)

Placing a tracheostomy ("trach") in Piper's airway, would allow her lungs the gasses they need to heal, AND keep her vent support settings lower than when she is on a nose cannula! Weaning those settings down means going home.... so let's do it. What exactly is a trach, you ask? 

A tracheostomy is an opening surgically created through the neck into the trachea (windpipe) to allow direct access to the breathing tube and is commonly done in an operating room under general anesthesia. A tube is usually placed through this opening to provide an airway and breathing is done through the tracheostomy tube rather than through the nose and mouth. (Mayo Clinic)

This sounds invasive, and it is, but it will get Piper back to a place where the word "home" is on the horizon. Placing a trach tube will narrow our focus, get us prepared for home, and will give the lungs the opportunity to heal without risk of further injury. Time is what is needed to heal Piper's lungs...and a trach will allow us to spend that time at home, rather than the hospital.  Time she can be sitting up, playing, learning, developing and doing normal baby things without a tube in her mouth! WOW!

SO, here's what the plan is shaping into:

• Tracheostomy procedure this coming week
• Heal up from procedure
• Wean new vent settings to acceptable "going home" state
• Wean those icky hospital druggy drugs
• Train mom & dad on home trach use 
• Home

How long will the above plan take to result in a home coming? Who the heck knows, but we are well on our way and we are happy to be moving forward. When impatience starts to creep in during this process, I remember when we were just "surviving" on an hourly basis...look how far we've come. For that, I will be grateful for this long journey.

OK, my fingers are officially tired of typing medical jargon! Onto the fun stuff!

Piper Grace has been a total goofball lately. She tracks movements of her favorite silly nurses, loves to have her hands in her mouth, and thinks her momma is super funny! She has been such a doll, and tolerating this temporary intubation so well. 

Please pray for a smooth trach procedure this week, Piper's pain to be managed well, Mom & Dad to get some sleep, and for all to BE STILL and GRATEFUL for where we are. Piper is here. Piper rocks our socks off!

TV Times & Blankies!

Hey all!
While there are some things in the works for updating about Miss Piper, I thought I'd touch base about 2 other very cool things! Blanket Drive and the documentary premier event!

First off, HOW COOL IS THAT BLANKET DRIVE LOGO!?!?!?!?!?!

Our great friend, Bobby Cooley, was awesome enough to donate his time and talent to create that for our cause! We will be using it for future flyers, thank you cards, donation letters to the hospital, info cards and all sorts of other fun ways! Thank you, Bob, for making us look and feel official. You rock our chucks off! 

REMINDER: BLANKETS DUE 12/20!

About 30 fluffy blankets have trickled in thus far, with many more on their way this week! Checking the mail for blankets has become my favorite pastime, and I look like a crazy lady stalking the mail man...but I'm excited! Nurses are excited! Cannot wait to stock that NICU linen closet; and see all the fresh new blankets with these sweet babies! You guys are doing awesome, and we are so appreciative of your help in giving back. If you need a blanket drive refresher, or need to pass info along to a friend, see our Blanket Drive Blog!

You can count on me to post a fabulous photo surrounded by fluff once all the donations are in! Feel free to email me if you need anything, or have any questions at all. 

Onto the next...........

On Nov. 18th, Matt and I, along with our families, attended the VIP Children's Mercy premier event for the Inside Pediatrics docu-series. We had a great time with hospital insiders, screened the first episode, and yours truly spoke on the Q&A panel in front of a BUNCH of well dressed people. YIKES! 

1. I did not faint - yay me.
2. I was sitting next to our favorite surgeon, Corey Iqbal!
3. I got to chat about the miracle that is Piper Grace!
4. People clapped. (They MAY have been happy to hear of Piper's progress, but I'd like to think it was because I was just so darn awesome.)

The filming of the docu-series has been a crazy roller coaster ride, and we are so excited to see it come to fruition. 6 episodes will follow a number of stories and hospital staffers; and each of those episodes will touch base with OUR journey...starting with me pregnant! HUGE and pregnant. HUGE.

I will list the air dates in full below, for our local peeps, but worry not if you aren't in our viewing area! Full length episodes will be available online, after each is aired, at www.InsidePediatrics.com

So set your DVR's, grab some kleenex, and buckle up!

Airing on 

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Episode 1: Wed, Dec 17 at 7:00 PM

Episode 2: Wed, Dec 17 at 7:30 PM

Episode 3: Thu, Dec 18 at 6:30 PM

Episode 4: Fri, Dec 19 at 6:30 PM

Episode 5: Sun, Dec 21 at 12:00 AM

Episode 6: Sun, Dec 21 at 12:30 AM

Encore presentations on 

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Episode 1: Sat, Dec 20 at 7:00 PM

Episode 2: Sat, Dec 20 at 7:30 PM

Episode 3: Sat, Dec 20 at 8:00 PM

Episode 4: Sat, Dec 20 at 8:30 PM

Episode 5: Sun, Dec 21 at 8:00 PM

Episode 6: Sun, Dec 21 at 8:30 PM

 

Help Us Pay it Forward - Grace Blanket Drive

Hey ya'll!

Just a couple quick updates before I get into the meat of why I'm blogging tonight. Since our "blip" setback a couple weeks ago, Piper has been extubated, and is back on CPAP cannula. She is alert, chatty and back to her strong willed self. We are so grateful for all the staff that helped intervene, and get her back on the mend. We are back to our old routine of wean oxygen, wean drugs, add feeds....repeat. Please continue praying for her baby steps to success!

Also, we are excited to attend the premier of Children's Mercy's docu-series, "Inside Pediatrics," Tuesday night! This is a huge deal for us and I can't wait to blog pics and more info asap!

Alright. Down to business!
For a while now, it has been on my heart to give back, and acknowledge our love for the NICU staff at Children's Mercy. I've thought a lot about how we could give back...and I've come up with a plan that can involve YOU!

Matt and I have been beyond blessed to have such amazing gifts sent to us; as well as having our own money to spend on all of Piper's adorable blankets and linens. Most of the time, in the NICU, this is not the case. Our night time nurses pride themselves on the task completed at the beginning of their shift - bathing cute babies and giving them a fresh clean bed to sleep in. Our nurses are in LOVE with all of Piper's wonderful blankies, and it hit me...that's how we will give back!

There are over 75 bed spaces in the NICU, and each baby gets a nightly crib linen change. I've been up at the hospital when nurses are scrambling to find nice blankets for these babes when the patient count is at an all time high. More often than not, stark white hospital linens are used; which are great, but imagine the warmth a new special blanket would give the staff, the parents, the babies in need! A blanket with color, a blanket with pizzazz, a blanket sent with love.

We are so excited to be doing Grace Blanket Drive for the sweet babies of Children's Mercy Hospital!!! Named after our sweet Piper Grace, and made possible by her very own prayer warriors! I am asking for your help! If you'd love to pay it forward with us, consider donating blankets to our cause! I've listed extended info and ideas for ya below.

CONTACT: me, Tara, at tarajarvis13@gmail.com for the address to mail blankets to.
TIME FRAME:  Please have all blankets sent by 12.20.2014

WHAT IS NEEDED?
NEW baby blankets of all types, colors or prints! Have some fun, tell your friends, and use your creative gifts! Nurses love a fun spiffy new blankie!

• Sew your own! - About a square yard of fabric will do. (flannel & fleece hold up well to washing.)
• No Sew Fleece Tie blankets -can be made by youth groups, as a life group activity, girl's night in, etc!
• Google "Fleece Tie Blanket Instructions" for a bajillion simple how-to's
• Buy a Blankie!
• any medium sized baby blanket or throw 
• cotton or flannel receiving blankets 

Seems simple enough, right? I am so excited to get started, and I hope you are too. These nurses, and this NICU have blessed us with their unwavering love and care for Piper Grace, and we cannot wait to give back. We are counting on your help! Please do not hesitate to email me with questions! Here's to warming hearts, by blanketing babies with love.

Our Little Blip

I am in a horrible, terrible, no good, very bad mood. There, I said it, I got that out there. I feel better already.

Miss Piper Grace has had a little bit of a setback. Last week, her feeds were going well, she was down on her oxygen, and we were very close to coming home. We had trained on home equipment, started nursery decor scrambling, and had gotten quietly excited. Quietly, because we know our plans matter not to Piper Grace and her healing. Silly silly girl.

Over the weekend, a couple changes were made to prepare Piper for home:

1. Increased her feeds from 85ml to 105ml every three hours. This allows mom & dad to sleep/skip a feed overnight and get everyone rest. (MOST babies tolerate this change fine. MOST babies.)
2. Discountinued the use of PRN (as needed) morphine for her once daily meltdown. This was such a small dose, we'd trial off and see how she tolerated it. 

This is when Piper chimes in and says, "Hold up momma, I'm not MOST babies!"
The increase in milk made her tummy FULL, and the lack of morphine triggered a bit of drug withdrawal. The end results of both? - Three days of a very pukey Piper. Unlike a normal, healthy baby who pukes, Piper cannot keep her stats stable when her ONE good lung becomes compromised. A couple of days of icky pukiness resulted in her aspirating a bit of her spit up into her good right lung. Once this lung becomes compromised, Piper has NO help from the other lung, and very limited reserves to help herself stabilize and oxygenate.

Chest X-ray has confirmed a lung compromised by aspiration pneumonia. This one good lung cannot do 2 things at once for Piper. It must fight this infection; but it cannot keep her body oxygenated enough as it does so. One thing has to give. To allow Piper's body, with the help of antibiotics, fight this aspiration pneumonia, we have to get her little body help in the OXYGEN department.

When an immunocompromised babe is needing breathing/oxygenating/gas exchange help, there is a hierarchy of support a NICU can provide. You'll remember me talking about most of these in earlier posts. (I've listed from MOST invasive/serious support - - - to least invasive support.)

• ECMO - heart lung bypass to oxygenate baby while their lungs rest
• Oscillating Ventilator - intubated baby with extra vibration for lungs to remain open
• Traditional Ventilator - breathing tube in throat regulating breathing/oxygen
• High Pressure/CPAP nose cannula - no tubes in throat, getting oxygen in nose
• Traditional nose cannula - provides minumal oxygen air flow to baby to keep stats up

Last week, when discussing home coming procedures, Piper was on her traditional nose cannula at an appropriate concentration to come home on! We were so proud! After aspirating her spit up, getting right lung pneumonia, and gradually needing more help to oxygenate...Piper has gone up to the Oscillating Vent as of this evening. Stop, look back up at my list above, and sigh along with me. DARN IT!!!! We were so close! I AM FRUSTRATED! 

Piper is needing some serious support right now to keep her oxygen sats up when her body fights this infection. She had to be paralyzed, re-intubated, put multiple IV lines in, and feedings stopped. Poor thing just needs help while that lung heals. That...will just take time. This is a reminder that we are not on anyone's schedule but Pipe's. She will gradually clear that lung, prove it with x-rays, and then we will gradually remove support as slowly as she sees fit. A step back that reminds us to not take advantage of anything. She will clear this hurdle...and you better believe that her momma is holding her starting blocks! No rush Pipes, thanks for reminding us. 

This set back, or blip as I like to call it, has thrown my attitude for a loop. I feel I have remained logical and composed through these 12 weeks of NICU. The fun mom that chit chats and knows when to talk medical and when to give comic relief to nurses working their butts off. Sunday night, I lost my sparkle. I logically knew we needed to get Piper the help she needed, but I was emotionally done. Done with not being able to fix it. Done with being strong, done with being scared, done with being tired. Done. I had walked into the NICU then moment they were intubating my baby, and I found a quiet place to cry. To be done. 

Trying my hardest to regain my composure before walking to Piper's cube, I experienced the exact reason I am in love with this hospital. Sitting alone in a NICU family room, multiple nurses walk in to be my shoulder. A nurse who has watched Piper during night shift lately, a nurse who watched Piper when she had her gtube, a nurse who was in the room when Piper was born and not supposed to live. The nurse who looked over our baby when her survival was assessed hourly. Surrounded by strong women, I am overwhelmed with love and I just CRIED. These women know our story, know our Piper, know our struggle, and are pulling for a happy ending just as much as we are. To look in the face of a woman who tells me to "come here, momma, and cry" is to feel completely wrapped in God's love and care. These women let me cry, let me be frustrated, and then picked me up. I cannot put into words how grateful I am for the women of Children's Mercy. The love I feel from them in my time of need is all encompassing and I know they are being used to remind me that it will be ok. 

It will be ok. Piper might need some serious support (we're thinking a of couple weeks,) and then we will be back to our bright eyed girl working to get home. We are taking things day to day, trying our best to be patient as this ickyness dissipates, and her numbers improve again. Bright side? Been there - done that - and we know Piper can kick extubation's butt when the time comes! 

Until then, please pray for everyone's well being. I'll make an easy list of specific prayer:

• Piper's numbers stay same and DO NOT WORSEN
• That her lung clears up quickly
• That we stay away from needing ECMO (big deal prayer!)
• That she extubates and is comfortable soon
• For mom and dad's weariness and fear
• For the fabulous women of the hospital to know they're appreciated & loved
• For patience to flow from us to the staff. No hurrying Piper Grace
• For no icky flu bugs sneaking into that NICU

At times like this, I am reminded that it is easy to be grateful and faithful when things are on the up n up. When times seem dire and frustrating, I must stop and remember who got us here. Piper is alive when she wasn't supposed to be, and no set back will let me forget that. She is HERE and she will FIGHT and we strive to give God the glory for even the tiniest victory. She is here. She is fighting. Go Piper go!

Have you  not heard? The Lord is the everlasting God, the creator of the ends of the Earth. He will not grow tired and weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the week. Even youths grow tired and weary; and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not grow faint. (Isaiah 40:28-31)

Power it Up PIPES!