Thursday, April 27, 2017

Happy Birthday, Sweet Girl

Happy 3rd birthday, sweet girl. 
You are beautiful in so, so many ways. 

Words cannot describe the joy that was this past year loving on you and watching you grow and thrive beyond what any of us could have expected. 

"Now to Him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen." Ephesians 3:20-21

This Year:

You learned to roll over again.

Almost sitting up. 

Yanking EVERY cord. 

Officially off of your vent 24/7 (unless you've got a germ bug). 

You only stayed in the hospital less than 4 nights out of this entire year, and one of those was for observation after anesthesia!!! WE STAYED HOME!!!

You transitioned from Infant and Toddler home program to Head Start in home weekly therapies for PT, OT, Speech, Hearing, Special Ed, and Vision. 

You learned how to sign Mama, Daddy, up, hello, bye, more, yes, no, and please, and are working on more daily. 

You graduated out of your second infant/toddler program at Children's Mercy. In 2015 you graduated from the CHAMPS Cardiac Program and onto a Pediatric Cardiologist. This past month you graduated from the Infant / Toddler Home Vent team (also your primary docs), and are officially followed by a local pediatrician and gained a pulmonologist. These are two programs that not many believed you would ever age out of and graduate from. Well done, sweet girl!

You spend most of your day awake and up and playing instead of napping and laying down all day. The front window belongs to you and you love to watch the cars and scenes outside while you sit in your high chair or bumbo. You now sit in our lap supporting your upper torso on your own. 

You are using a stander!!

You are wearing your hearing aids!

You (mostly sometimes) sleep through the night. 

You are on the growth charts and have a beautiful curve on it. 

Your favorite things include your taggies, cuddle time, sitting in our lap, teething rings, baby wipes, books, bright twinkle lights, family time, and music. 

You continue to beat all of the odds. 

You let me hold you on my hip and snuggle you close, chest to chest. 

You're showing more and more emotion and spunk. You've learned to hit and kick if you're really mad, and to show your excitement for new things. 

Your favorite pastime is swinging on the front lawn while watching your siblings run wild. 

You're addicted to Winnie the Pooh. 

And we love you for all that you are and continue to prove to us that you're fighting to be. You tackle down stereotypes and trample limited expectations. You soar above your limits and continue to prove many wrong. And you're ornery to no end. And we love you for that. 

Happy Birthday, sweet girl. 

Wednesday, March 22, 2017

Thankful for the Unknown {An Excerpt from Finding Thanks}

//Excerpt from the book (in progress) Finding Thanks by JGerling//

Chapter 7
Thankful  for the Unknown
A diagnosis. Two amniocenteses tests later and we finally had our diagnosis, but it was so rare that there was literally no information for us to learn more about what this was or how to help our daughter. All we knew at this point was that the real name of this scary thing we were going through was called Mosaic Trisomy 22, or MT22. Essentially, Chloe’s twenty-second chromosome carried an extra chromosome, so instead of a set of two chromosomes, there was an extra, making three instead of two, but not in every cell of her body, hence the mosaic part. 

And nobody knew much more beyond that.

I was seen weekly by my local doctor, if for nothing more than to answer all our questions and listen for a heartbeat, and give my tired and weary mind rest for a few more days. Every fourth week we would travel the children’s hospital in our region for more in-depth ultrasounds and her fetal heart echo. We met with various teams from around the hospital who would be helping us, hopefully, get to full-term and delivery. Our hearts usually arrived on appointment days in Kansas City filled with hope, and left with worry. Doctors are trained to give all the sides of the story. It’s just what they’re trained to do, but it usually left us grasping for faith and remembering that our God is still good, even though that day’s ultrasound showed a club foot after all, or this week the amniotic fluid was lower. And the Lord provided so much strength when our knees were the weakest.

It was still hard to come home from each appointment and watch as my friend’s around me who were pregnant advanced with great ease and health, while mine stood still. Literally, we didn’t even know anymore what week gestation our baby was because measurements were not adding up with dates. It wasn’t until we were able to compare some early ultrasounds with later ones, and came upon the diagnosis of something called IUGR, or Intrauterine Growth Restriction. In short, our baby, who already had a slew of health issues, also was not growing well in size. 

When that diagnosis came, I sobbed and did what every hormonal pregnant mama did: I complained.

“What week am I in again? Because it feels like this is the pregnancy from eternity! I’ve been twenty-four weeks for three weeks now!” I wailed at my doctor, begging for clarity now that we had the IUGR info at hand.

“Yeah, you’re an elephant!”


“That’s not what I meant! I mean like, well, like how it takes an elephant two years for gestation!”

I started to cry, but laugh at the same time. I knew I wasn’t like an elephant, but tell a pregnant lady that her pregnancy is going to last forever and compare it to an elephant and she’ll break down. We know very well that my doctor did not mean it that way at all, but was simply making a comparison, of sorts, and thankfully this provided a much needed comic relief moment while on this path to our daughter’s delivery. (And the elephant joke has never died, and we still think it was one hundred percent hilarious that those were the words that fell out). 

The entire pregnancy was a swinging pendulum, one end hitting on every fear we could ever have as parents, and the other end on the mystery of why the Lord chose us for this child, and the uncertainty that was her trisomy. The only thing that was sure, that was certain, was that despite those along our path who advised us of getting an abortion, we knew without a doubt that this child would live until the Lord decided to stop her beating heart on His own time. Abortion was not an option for us. Life was all we would ever consider. And to be clear, we knew what our stops were with her in regards to this, but as long as her heart beat without suffering, then we chose life.

Our daughter was born exactly one week after Good Friday. The moments leading up to her birth were filled with such worry and anxiety for me. I was terrified to be her mother. I felt in no way equipped to handle the life of a special needs child. Of a heart baby. I was not a nurse; I only knew how to be a mother. I had no medical training, and yet I knew that the moment she was born I would be immersed in medical life, and it terrified me. The doctors preparing to deliver her questioned why I was so nervous and thought it was the surgery itself to deliver her, so I let them believe that because I wasn’t about to tell them that I was scared to meet my daughter. No parent admits that. But most of all, I was afraid that I wouldn’t be enough for her. That I couldn’t fix her, and so much of her was unknown.

But there was also joy. Amazing joy that she was here, she’d made it to almost full-term, and her heart was still beating and she was breathing on her own. And even through a three-chamber heart, cleft lip and cleft palate, a clubbed foot, and later what we would learn was only one kidney, we still heard her first strong cry echo over the delivery room. She was here, finally, and she was letting us know it. I could hear her tiny little cry from the room adjacent to mine where they were working to help her seconds after she was born. That cry was a rally cry that she had made it here. I was so blessed by the fact that although her future seemed so unknown and bleak at that moment as we waited to see how she would do out of the womb, that the Lord allowed that sweet cry to echo over the room so that I could hear it and know she was here and that she was alive. 

We were so thankful that the Lord had placed this tiny three pound, seven-ounce gift into our arms and into our life. We were terrified, but thankful. Neither of us had any idea what this next step would be like, or that we would end up spending the next five-plus months living out of the Ronald McDonald House as we navigated the life of the NICU, getting our daughter to grow and be strong enough for heart surgery. Our minds had no way or fore-knowledge to grasp such unknowns that her trisomy would bring into our world. All we knew at this point was that we’d found a support group online for family members whose child or relative had MT22, and let me just say, there were not many in that group. It was by the grace of God that we stumbled across that, and it became our second source of hope, next to the Lord. When we read stories and saw pictures of other children living lives full of love and laughter regardless of what an extra chromosome said about them. Sadly, some children did not survive, and that left us with a great amount of compassion for their families, and concern for our daughter’s future. But there was one main thread that was woven into this group of people with Mosaic Trisomy 22: Everything with this trisomy is rare and unknown. No two cases are a like in similarity. A few traits crisscross between different people, but overall, this abnormality is so abnormal, that all we know is that there is a chance you can survive it, so we clung to that piece of information, and we studied and held close the images of the other children living with this trisomy, and we held onto hope.

My husband loves academia, and I love to research things, so together we make a pretty powerful pair when it comes to learning about new things. It especially came in handy when we were met by the hospital’s chair of the Bio-Ethics department and he carefully considered his questions for us as he probed us to make sure we understood the depth and concern of our daughter’s trisomy. We shared our story. We showed him pictures of the other MT22 children. We explained our stance on life and on why we were making the choices we were and didn’t choose to abort before her birth. And shockingly, he agreed. Being that our daughter’s diagnosis was so rare left open the door that she was a grey-zone baby, and that we had every right to continue granting her life even when she was ornery and would do things like aspirate, code, and find other ways to freak us out. The unknown of her diagnosis became the rally cry that just because it’s rarely documented does not mean it should end. Statistics sat there, off to the side, benched, as we instead fought and advocated for our daughter, carefully balancing each decision, each consent for surgery, each procedure against her chances of survival.

Our hearts learned to trust the Lord more deeply and press into the unknown. Never had we been so thankful to hold the word unknown in our hands, carefully and delicately, and still be so thankful for the timbre of that word. It is by nature alone that humanity wants to know what is next, what’s to come, how to move forward or at least a reason to pause. But to be certain of, and thankful for, the unknown left us with only the opportunity to trust Christ with our daughter’s life. Any other word that might describe her diagnosis, and the scale that lends itself to either a white-zone baby or a black-zone baby may have tilted against our desires, and we might have trusted statistics over our instincts.

In the NICU, there’s the saying, “Look at the baby.” What it means is to look at the baby to decide if they’re blue or struggling or whatever the situation might be. Do not always trust the monitors and beeps. In our case, we were choosing to look at our God and press into this space of unknown, these waters that were consuming us, into a grey zone that we knew nothing about, and be able to thank Him for leading us instead of leaving us. God’s Word says in Isaiah chapter forty-three verse two that, “When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.” (ESV)
Tuesday, February 28, 2017

Waiting for Results

After months of scheduling and rescheduling Chloe's MRI, we were finally able to follow through and get it done this last week. Set back after set back, including MRI machine down and a urinary tract infection (UTI) being treated in October, November sickness, no room at the inn (PICU bed unavailable) in December, and finally one more push back from January to February due to yet another UTI.

We've spent the last two months, one ER trip to KC Children's ER, and various labs tracking down a consistent high fever. We've test for everything under the sun and concluded at one point that it was something viral plus teething. Another time it was an ear infection that also included MRSA.

But through it all, we've seen no distinct changes in her fontanel pressure, other than it's slightly less full when she's off her vent than when she's on it. We continue to watch closely for any signs of seizures, however her seizure activity ceased completely last fall after she started her first seizure med. We're grateful that in regards to possible pressures in her head that she's been stable all this time.

That brings us to last week. She had a crazy little episode while getting her up the morning of her first day of appointments where she dropped her heart rate rather quickly and back up again, and somehow woke with a 100.8 fever. Our concern became more real as we closely watched for any signs of sickness, or the MRI would need to be cancelled. At her regular Home Vent appointment, her doctor explained to us that continued cranial pressure over time can cause a quick heart rate drop and make it difficult to regulate body temperature, and thus even though they might appear like illness coming on, it was more important to gather the information needed by going through with the MRI.

Chloe did great with her MRI and recovery this time from anesthesia. We came home over the weekend and are waiting for results from the MRI. The only glitch was that her heart echo was showing a slightly weaker squeeze when done under anesthesia to get better pictures, than in clinic two days before. We pray that it was only due to the anesthesia and nothing else of concern.

What we're waiting to learn: The reason for the MRI was to determine why her fontanel is still full. Why her eyes show edema (swelling) on her optic nerves and still twitch at times when she's trying to focus. If there's fluid on her brain and whether that means a shunt to drain that fluid and relieve pressure. Or, if not fluid, reasons why these symptoms are still here a year out from when they were first noticed. Is the pressure in her head due to the changing pressures from her Glenn heart surgery last year, and if so, will it continue to go down the more we wean off her vent? And thus, is it a less invasive waiting game to get off the vent than an invasive shunt?

We have discussed this at length with her team of doctors and with her Palliative care doctors. We're all on board that she needed the MRI, and we're on board with a possible shunt if that is needed, if even for comfort care. The Palliative care team assured us that many families choose that for comfort measures. I can't imagine having a headache or migraine every single day due to pressures, if that's what she's experiencing but cannot communicate to us.

That brings us to this week of waiting on results and planning out future neurology appointments.

And the weirdest part is simply that we do not know how to pray through this.

We know we need to pray, that we're called to pray, that God hears our prayers. But we also know that prayer is not a list of our wishes prayed over and over in an attempt to make them come true. Too often people tend to pray for the things they want-good health, wealth, no suffering, that dream house, that car to get fixed, the paycheck to stretch, fill-in-the-need. We usually approach the Mercy Seat with our mind already fixed on what the answer is.

But what if we don't know? We truly do not know what the best outcome of results would be in our current situation. We don't know if we should be praying for a shunt, or praying for no fluid so she can wean from her vent. Both have negative consequences and poor outcomes on one hand, or good results and outcomes on the other.

We usually know how to pray for her needs. We ask the Lord to intervene on the level of knowledge that we as humans have, and then wait expectantly for Him to come through. This season of waiting for the MRI has taught us, above all else, to just pray. To pray the Lord's Prayer as taught in the Sermon on the Mount (Matthew 6:5-15//Prayer 6:9-13). Not filled with every example of outcome and result, but simply from a heart that trusts that He is good, He is for us, and He will go ahead of us in this to help our daughter.

We ask that you would pray that for us and for Chloe as well. Because His will covers the skill of the doctors and the anxiety of our hearts. Because He provides our daily bread as each need we do not even know of is met. Because He forgives us just as we have learned to forgive others. Every need and want and worry is met in that simple prayer.

"Now to Him Who is able to do far more abundantly than all that we ask or think, to Him be glory in the Church and in Christ Jesus throughout all generations, forever and ever. Amen." 
Ephesians 3:20-21