All photos in this post taken by Cheyenne Schultz of The Schultzes Photography
~ ~ ~ Links are provided to the contact-info for all of the wonderful doctors mentioned in this post. If your baby has been diagnosed with
a genetic condition and has been labeled "incompatible with life," and you live in the Charlotte, NC area, we have only wonderful things
to say about all of the doctors whose names are mentioned here and would highly recommend any of them! ~ ~ ~
After my C-section, I was held hostage in recovery for several hours. If you remember from my last post (Avonlea's birth story), you'll recall that the day before she was born, my blood pressure was high and indicative of mild preeclampsia. The only way to treat preeclampsia is to deliver the baby. However, even after delivering, my blood pressure stayed high for about 12 hours!
The time I spent in recovery was... beyond boring. They were literally trying to bore my blood-pressure back down. I was put on magnesium, and I wasn't allowed to see visitors in order to limit stimulation in hopes that this would help the high BP. The nurses made an exception for my mom and dad to pop in and see me shortly, and for Avonlea's pediatric cardiologist to come give me an update. In between, I just caught as much sleep as I could. I remember my mouth feeling excessively dry from the magnesium and not being allowed to drink anything- I was allowed to chew on some ice chips but what it didn't help much.
Avonlea was born at 12:02pm, and I was made to stay in recovery until close to 4:40pm! During that near 5-hour span of time, Brian stayed with Avonlea while she got her echocardiogram and various other little tests. Her learned how to change her diaper, feed her and burp her! I was so jealous that Brian was allowed to spend all this time with her and I was quarantined in a corner. He had a whole day with her that I basically missed out on! He reminded me, though, that during the pregnancy, I'd had lots of time with her all to myself. For the last nine months, anytime I went anywhere without him had pretty much been one-on-one time, just me and her. As jealous as I was, he was glad to have had some time to bond with his baby girl. Also during this time, family was allowed into the NICU one at a time per our birth-plan to meet Avonlea.
They gave me a soapy wash-cloth and made me scrub my swollen sausage hands the entire ride over to the NICU. Normally NICU visitors have to scrub in at the entrance for 3 minutes before entering, but I was contained to a hospital bed, which wouldn't fit through the front entrance and they were having to take me in through a back way.
I was so excited!
Holy crap. I'm a mom... I'm a mom and I'm about to see my baby! What in the world...
As they wheeled me down the long NICU hallway towards Avonlea's little cubicle, I finally caught a glimpse of Brian. He was standing in a semi-curtained-off space, holding a swaddled little bundle in his arms. He was staring at me and beaming like I'd only seen him do one other time in our 5 years together.
That moment, laying in that hospital bed and being wheeled down that hallway towards my little family? The whole thing felt surprisingly like a de ja vu back to our wedding! I was floating down somewhat of an "aisle," towards Brian, and he was smiling at me with the same look on his face he'd had as he watched me walk down the aisle. And there was also the clicking shutter of a camera going off somewhere in the background as I glided closer and closer to the love of my life. I love remembering these two irreplaceable moments in my life so similarly!
They wheeled my hospital bed into Avonlea's space and finally... FINALLY... I got to hold my Avonlea in my own arms. She was groggy- being alive for the first time outside the womb must be exhausting for a newborn! It's the first time they're encountering gravity, loud noises, light... the last 5 hours of navigating all of those transitions had worn her out. After a few moments of holding her, the nurses unwrapped her from her blanket and placed her inside my gown so she and I could have some skin to skin time. I remember thinking that no other interaction had ever felt so natural and pure in my whole life.
This was where she was meant to be.
my first thought is... wow.
Just... wow! Nothing truly compares to the moment you really get to meet your child.
I know I'd gotten to see her right after she was born for a moment, but this was just so surreal... she still didn't feel like mine. But when her tiny body was placed against my chest and I could feel her heartbeat against my skin, I was her mom.
And we were a family...
My second thought when I look back at these photos is... HOLY MOLY I WAS SWOLLEN.
Haha... I know, I know, I'd just had a baby. And the preeclampsia had taken over by this time and really done a number on me. It's amazing how quickly I had puffed up just in the 24 hours since our doctors' appointment the day before. Thank goodness my OB's say there's no reason to suspect that I'll be likely to contract preeclampsia next time.
That swelling was no joke!
I was only allowed a few minutes in the NICU since my blood pressure was refusing to cooperate. I needed sleep... as devastated as I was to leave my baby, I knew that the fact that I hadn't slept for more than 15 minutes consecutively in the past 36 hours was certainly not helping. I reluctantly (and maybe a little tearfully), let the NICU nurses take Avonlea and someone wheeled me away to the hospital room where I'd be staying until I was discharged.
I had to wait in my room, alone, until my blood pressure came down before I would be allowed back in the NICU... the night-nurse was just starting her shift as I was getting settled in the room and told me it would probably be about 12 hours! I was so disheartened... I'd spent a cumulative total of about 10 minutes with my baby over the last 5 hours since she'd been born. I felt better knowing the Brian could stay with her as long as he wanted and knew that she was in amazing hands with the neonatologists, but uuugggh. I wanted to be with her!
I slept until Brian woke me as he came into the room a few hours later, but he'd only come in to get some sleep himself. We both slept until a little after midnight (with the exception of the nurse coming in to take my blood pressure every freaking hour and waking me). It was then that the nurse finally told me my blood pressure had lowered and stabilized enough that I could go see Avonlea as soon as I felt up to it! And after about 7 straight hours of only semi-interrupted sleep, I was ready. I woke Brian and told him I could go to the NICU finally and he shot out of his hilarious excuse for a bed (really, a glorified bench), and helped me into a wheelchair and took me to see our daughter.
That time we spent together with her that night is one of the most precious memories I'll ever hold... Avonlea's nurse curtained off her little cubicle and we had a good solid hour together, just the three of us, in the dim, quite night-hours of the NICU.
I finally got a really good cry in at that point. I think up until then I'd only teared up, or shed a tear or two here and there. But when I finally got my baby in my arms and knew that I could hold her as long as I wanted, that no one was standing over my shoulder waiting to whisk either one of us away from each other, and I could really take it all in....
I lost it.
I held her in my arms and just stared at her sweet face, I held her against my chest and snuggled her so tight. She floated in and out of sleep and looked around with her little, unevenly squinted, black eyes. She was so perfect! No facial disfigurements (although at the time, her face was so swollen, I wondered if she would have a distinct "trisomy" face... she quickly grew into her features and now looks very "normal"). No missing or extra digits... just ten perfect fingers and ten perfect toes (her little feet, however, were a little clubbed around the heels and inner arches and as of the date of this post, still are). And her breathing... her soft, perfect breaths needed no "respiratory assistance" in order to function! No cleft palette to inhibit her feeding (Brian had fed her a few times already at this point, and said she had no problem latching or sucking... she did however throw absolutely every last bit of formula up and since she couldn't keep anything down, had been given a feeding tube through her nose into her stomach so she could receive nourishment and not spit everything up from the exhaustion of feeding normally).
I watched Brian hold her and saw a new vulnerability in him- she had him wrapped around her itty bitty finger and she was only half a day old. He'd already had so much time with her that I hadn't had, hours to bond with her, to fall in love with her... and he'd fallen hard. She could break his heart in a way no one or nothing else could ever be capable of.
If we lost her now, it'd be a whole different ballgame.
There were so many questions heavily spinning through my mind... She's stable now, but what happens when inevitably she's not? When will that happen? How long will we have with her until then? Will our time with her consist of commutes from Rock Hill to Charlotte to visit her in the NICU as she endures surgeries, or worse, as she starts to decline?
As the uncertainty began to cloud my mind, I realized that none of those questions were worth allowing to ruin this moment. If now was all we had, that time was too precious, and I needed to be able to remember it as perfect. I needed to just be still and soak up every bit of this baby that I could.
I silenced all of the questions and just... loved Avonlea.
Everything was so quiet. Avonlea was being kept in the "intensive care" wing of the NICU and all of the other babies around her were in incubators which beeped softly in the background... I noticed many of the little ones surrounding Avonlea's little cubicle were on feeding or breathing tubes, too fragile to move much or make any kind of noises. And then, as we sat in that still, quiet place full of sickness and brokenness, our little Avonlea would move, jerk her hands up into the air or touch her face... let out little sighs and squeaks, and then cry softly. It almost seemed as if she had no business being there- she seemed so normal, so strong.
Leaving her there in the NICU to go back to my hospital room felt like heartbreak all over again. When they took her from me in the O.R., we'd known that they only needed to get her admitted and settled into the NICU before Brian could go be with her. And when they'd let me see her for those few short moments after recovery, I was leaving her with Brian as they wheeled me away.
But as I laid my baby in her little bassinet and I felt Brian unlock the wheels on my wheelchair to walk us back to my hospital room, I felt like we were leaving her all by herself. We were leaving part of our family on a completely different side of a building and the mixed emotions stung.
I wanted to sleep, and rest up for the day ahead... I didn't have any idea what was going to happen tomorrow but I was sure I wanted to be awake for it.
I also deeply desired to stay. Moms aren't supposed to leave their newborn babies... I missed her the second her little bassinet was out of my field of vision.
The next week was an absolute blur of chaos!
The day after Avonlea's birth was probably the craziest of all. Brian and I got up a 6:30am in order to be at Avonlea's bedside for her follow-up echocardiogram and for the neonatologists' rounds. Hearing the neonatologist who had, not even 24 hours ago told me not to expect my baby to have any quality of life, tell his staff that Avonlea was "very very vigorous" was such a small but sweet moment of victory! While we were in the NICU for the echo and doctors' rounds, Dr. Clarke (our very favorite OB who we'd wanted to deliver Avonlea before I went into labor early), came and found me in the NICU to check on me! She'd been by my room, saw that we weren't there and just came looking for me, haha! It was awesome to introduce her to the baby she'd been helping us prepare to lose.
Grandparents, life-long friends who'd flown in from all over the country, kindred spirits from the wedding-industry, and loved ones from our church all came to see us and Avonlea that day. And in the midst of introducing her to over 30 people that day, different doctors came in and out to examine her and help narrow down a prognosis.
Dr. Spence, a geneticist from Levine Children's Hospital, came to examine Avonlea and make an official diagnosis (as if two positive amniocentesis results weren't enough). He shook my hand, sat in a rocking chair facing me (Brian was entertaining visitors in the waiting room), and simply asked me to tell him "everything." I laughed and told him I had no idea where to begin.
"I've read your file," he said, "but I want to hear in your words what this process has been like for you and your family."
I started at all the way back at our 12-week genetic screenings, jumped to the gender-ultrasound in October where the single-artery umbilical cord was discovered, then to the first scan at Maternal Fetal Medicine a few months later that revealed problems with Avonlea's heart, brain and kidneys that prompted the first amniocentesis. As I described our experience, at Maternal Fetal Medicine, Dr. Spence sighed and apologized for me having to deal with the perinatologist we'd had at that ultrasound (the one who'd brought up the possibility of aborting)! I had to laugh... it was nice to know I wasn't crazy in thinking that that particular perinatologist was a total douchebag.
I told him about the false-negative from the amnio, the phone-call from the genetic counselor with the correct results, the second-opinion amnio and the very little information we'd been able to ascertain as to a prognosis.
When I was done, Dr. Spence began rattling off the statistics he knew I was already familiar with. My dad came in as Dr. Spence was going over this with me and held Avonlea while I talked with the doctor. He said that according to the results of both amniocenteses, it seemed as though Avonlea had "full" Trisomy 13, and NOT "mosaic" Trisomy 13, the form we were hoping she'd have. He said, at the most, she MAY be only 3% mosaic if anything, which is not enough mosaicism to affect her diagnosis much.
He examined her thoroughly and ordered some blood-work to be taken later that day. He still wanted more confirmation of Trisomy 13... He sat back down with us after the exam and said how remarkable Avonlea was. He reminded me how amazing it is that she has no disfigurements, the correct number of digits, that she can breathe and feed on her own! He called her... surprising.
I giggled at the word "surprising." There hadn't been a single aspect of my pregnancy, labor and delivery that had not been surprising, to say the least!
Dr. Spence grew serious at my reaction, which I realize must've seemed capricious.
"Mrs. Powell, I need you to understand...your daughter is a highly unusual case."
My dad, forever the engineer, asked: "So… if there was a scale for babies with Trisomy 13, Avonlea would be in the… say… 90th percentile, health-wise?"
Dr. Spence raised his eyebrows, "Oh, more like 99th!"
When I asked Dr. Spence point-blank how much time he thought we could plan to have with her, he of course couldn't give an answer. "She's definitely one of the lucky ones… I mean, if a baby HAS to have Trisomy 13, any parent would hope for this situation. She has no disfigurements other than the low-set ears and very mild rocker-bottom feet. And no internal issues, so… I don't see ANY reason why she won't see her first birthday."
We get to plan a first birthday party…
My next question was "What would her 'starting to decline' look like?"
Dr. Spence said that, since all of Avonlea's anomalies at birth were non-life-threatening, what typically happens with children with similar cases is that they catch a cold, maybe their 1st cold ever or maybe their 10th... and this escalates into apnea or pneumonia, which can eventually become lethal. He said that hers would be a very gradual decline. We would see it coming from a long ways off and have a lot of time to prepare. The only real "sudden" fatality on the table is of course SIDS, something EVERY infant is at risk for, whether or not there is a trisomy present.
Dr. Spence said he's seen babies in much worse shape than Avonlea live several years, many with great quality of life... He gave me a list of recommended pediatricians in my area who had experience with Trismy 13 children and whom he trusted would see Avolea for the unique case that she is and really fight for her.
The plan would be to see where we are in a year, and beyond that, take it one step at a time.
Later that afternoon, in between rounds of visitors, I retreated to my hospital room with a couple of sweet friends who'd come from out of state. While we were there, the hospital-room phone rang. It was Dr. Hammill, our pediatric cardiologist who'd come to examine Avonlea shortly after birth.
He had the results from her follow-up echocardiogram from earlier that morning. He said he was very, very pleased with what he was seeing! He said the heart defect that had stayed exactly the same from 28-40 weeks in-utero, in only 24 hours had HEALED ITSELF about 30%! "I have chills looking at her scans right now," I believe were his exact words! He said he anticipated that the defect had the potential to heal itself completely. It didn't even matter, now, that Avonlea was strong enough to withstand heart-surgery... she might not even need it! He said he wanted her to have one more echo that Friday to check the defects' progress and if all looked well, Avonlea would be able to be discharged the following week!
Discharged... like, we'd be bringing our baby HOME?
TO LIVE WITH US AT OUR HOUSE?!?!
Before she was born, the genetic counselor and neonatologists had told us that the only way Avonlea would ever be able to come home would be with hospice, that is, IF she "hung on" longer than 2-3 weeks, at which point there would simply be nothing left the NICU could do for her. Up until this conversation, our expectation had been that the only reason we'd ever get to bring our baby home would be so that she could pass away peacefully at home, with us.
As days rolled over one after the other, my OB's kept finding reasons to keep me from being discharged from the hospital. At first, it was nice to get to stay so close to the NICU, but after night #3, I was about to lose it. That hospital bed was not exactly Ritz-worthy, and nurses woke me up 2-3 times every night to check my vitals and make me take my prescriptions. My blood pressure spiked a bit on night #4 and ended up keeping me there another night until I'd been stuck on that maternity floor for 5 nights!
Those days of living in the hospital were like living in a surreal dream-world. Days all ran together and beyond that phone-call with Dr. Hammill, I have a hard time remembering what happened when.
I do remember that shortly after that phone-call, Brian went to check on Avonlea in the NICU and reported that they'd moved her from intensive care down to "special care," since she was doing so well and did not appear to be high-risk enough to stay in intensive care.
The next morning (Thursday the 6th), we ran into Dr. Maramreddy just outside the NICU. She was the neonatologist who'd met with us before Avonlea was born who'd spent time going over with us all of our options for respiratory assistance for Avonlea, assuming she would need it. That first time seeing her after Avonlea's birth was so joyful. She approached us very carefully, since she had not been into work yet since Avonlea's birth and had no idea what the outcome was. When we told her Avonlea was doing well, she looked so relieved!
At some point that day, an optometrist was brought in to give her an eye exam. This revealed that Avonlea had small, partial cataracts in the outer corners of both of her eyes. Dr. Saunders, the optometrist, said that these cataracts only affect her outer peripheral vision. I really liked Dr. Saunders… he was one of the only physicians at Presbyterian who pronounced Avonlea's name correctly! Haha. He had daughters who'd loved Anne of Green Gables… He ordered a 6-week follow-up appointment at his office to check on them and see if they grew- if they grew he would want to explore the possibility of removing them surgically.
…Surgery? We're actually talking about surgeries…
A week ago, we were under the impression that no doctor would want to operate on our baby… a baby that is supposed to be incompatible with life…
"...Trisomy 13 babies are usually not viable candidates for surgery..."
That was what we'd be told… key word being: usually
At another point, there was a cranial scan and an abdominal scan. Avonlea's prenatal ultrasounds had revealed suspected issues with her brain and kidneys, in addition to her heart, so these scans were done to confirm those issues. Her abdominal scan came back completely normal! No kidney problems whatsoever.
Her cranial scan did confirm the presence of a brain defect called agenesis of the corpus callosum, where the brain-matter connecting the two hemispheres of the brain fails to develop normally. In Avonlea's case, there are a few fibers of the hemispheres crossing over between that septum of brain-matter. Signs and symptoms of the affects of agenesis of the corpus callosum vary widely between individual patients, but almost always include developmental delays as far as milestones in early development, cognitive disabilities and social difficulties (it can often misdiagnosed as social disorders like Asperger's). We had been told, when the prenatal scans picked up suspicions of agenesis of the corpus callosum, that manifestations could very well include other serious and more immediate symptoms like seizures, low muscle-tone, difficulty feeding or inability to suck/swallow, hearing and vision impairments, and head, scalp or facial abnormalities.
(I'm sort of just paraphrasing all of this from the wikipedia article linked above, as well as what I remember from what
the perinatologists told us)
However, Avonlea was not displaying any feeding difficulties, head scalp or facial abnormalities, seizures or low muscle-tone, and the optometrist had ruled out vision problems. That left one more immediate symptom to be determined: her hearing.
When Brian and I came into the NICU early one morning, one of the nurses approached us apprehensively and told us that Avonlea had failed her hearing test. She was being "referred for further testing."
My heart sunk, but only a little. I'm sure that parents of perfectly normal, healthy babies would've felt the weight of MUCH more concern, but this problem was peanuts compared to where we had expected to be at this point!
Brian and I both just smiled and said, "Okay!"
The nurse looked a little confused… that was too easy.
"Now," she tried to reassure us in her most sensitive tone, "this doesn't mean for sure that she's deaf. Lots of babies fail their hearing test in the hospital and, after more extensive testing, turn out to have just been having an off-day or maybe only have very partial hearing loss…"
"Okay," we both answered again through simple shrugs and big smiles.
That poor nurse just stared at us with the most perplexed look on her face. Her demeanor implied that she was thinking, "I don't think you guys understand… I know that I'm trying to tell you it's not the end of the world and all, but you're acting like it's nothing!"
I finally ended the awkward silence.
"Honestly," I said, "we were told that this baby wasn't going to live. She's supposed to be incompatible with life, not be able to breathe or feed on her own… Maternal Fetal Medicine told us that she'd likely only have a few weeks to live... that is, IF she made it to term and then IF she wasn't stillborn. We had her funeral planned! We've always wanted to learn sign language, so if having to learn it is the worst we're having to deal with, we will learn sign language!"
The nurse smiled. "I guess that's a unique perspective you guys get to have…"
I also remember sitting in the NICU with my friend Brittany, who'd just gotten in on a red-eye from California, on the Friday morning (March 7th) following Avonlea's birth, and having one of the neonatologists we'd not met yet come over and sit with us and introduce himself. Doctor…. something. Haha I can't remember his name.
He asked if I had any questions. Today was the day Avonlea was supposed to be getting her follow-up echocardiogram, so I asked when that was supposed to be done.
"I'm not sure, I'll have to check…." he paused. "We REALLY don't expect to see much improvement, though..." I cringed. "...Babies with Trisomy 13 typically don't thrive enough for us to see much improvement of birth defects."
I decided in that moment that I did not like this guy.
You obviously don't know Avonlea. And you CLEARLY do not know my God.
All this time, my blood-pressue was doing gymnastics. Up and down, a little up, a lot down… it was all over the place. I would have the fantastic blood-pressure of a 19-year-old olympian one morning, and by lunch-time it would be up at some semi-alarming number again. And every time it was even the tiniest bit high, the next morning's OB rounds would end in my doctor saying they wanted to keep me another night. Avonlea was born on a Tuesday (March 4th), and it was Sunday (March 9th) before I broke out of that place!
And it was… holy moly… TUESDAY (March 11th) before we heard any word on follow-up echocardiogram results.
We had been told the follow-up echo would be performed on Friday the 7th, but somehow the orders for this scan got lost in the shuffle. We kept asking the nurses over the weekend, and kept getting vague "I'll have to check on that" responses. On Monday the 10th, we began pestering the neonatologists every time a new one came on-call. I specifically approached Dr. Maramreddy about it, and she promised to get to the bottom of it! It was around 10pm that Tuesday, on Avonlea's 1-week birthday, that the neonatologist on-staff that night delivered those echo results to us.
Dr. Jesse… I remember him specifically because he was extremely tall, handsome and had worked with our favorite OB, Dr. Clarke, in Florida while they were in medical school together. As he approached us, he apologized profusely for all of the confusion surrounding the echocardiogram. He told us they'd finally had it done earlier that day and the results were, in his words, "surprisingly improved."
He said that Avonlea's heart defect had healed itself almost completely!
No surgery would be necessary!
If there were words to describe the joy that surrounded this gracious, merciful and beautiful rainbow of God's faithfulness, I would express them.
But there are none. No words. Only humble tears…
Dr. Jesse said that between the wonderful echo results and Avonlea's beautifully increased feedings, he thought she could probably come home over the weekend, maybe even Friday (March 14th).
Tuesday the 11th was also the day that the doctors had Avonlea's NG (feeding) tube taken out. She had only needed it a few times that first week of her life and was increasing her feedings almost every day!
The following morning (Wednesday the 12th), we awoke to an early phone-call from an unknown 704 number. Historically, this has only preceded us receiving bad news.
I answered my phone with a lump in my throat.
"Mrs. Powell? This is Shea calling from the NICU at Presbyterian Hospital…"
"Yes?" Brian could hear the nurses's muffled voice as well. We both shot up into a half-sitting,
"Nothing's wrong, everything is fine over here with your daughter. I'm the discharge nurse, I'm calling with GOOD news!"
...Breathe… remember? It goes: inhale. Then: exhale… Repeat as needed...
I thanked her for opening with that. Both of our hearts were pounding, recovering from worry that Avonlea had somehow started declining, or worse. The nurse told us that during the neonatologist's rounds that morning, they all agreed that Avonlea was ready to come home...
Our baby is coming home tomorrow?!?!
I teared up. Brian grinned from ear to ear! We had so much to do to prepare… we spent most of the rest of the day saying good-bye to friends who were flying back to their homes, cleaning and making sure we had everything in order to bring home a baby! We chose a pediatrician, made sure our car-seat fit in our car (it didn't… haha, there was no way for both of us to be able to ride in the front seats with the car-seat installed on either side, haha), packed a diaper bag, and picked out an outfit to change Avonlea into to come home in.
The next morning, we were interviewed by our dear friend Leslie Nease on her radio show, "Rob & Leslie" on HIS Radio 89.3 (click >here< for the interview). We did the skype-interview at around 7am, and immediately headed out to buy diapers and little here-and-there items to tide us over until our baby shower, which our family and friends were planning to throw at the end of the month. Then it was off to the hospital to sit with Avonlea and wait for the doctors to finish their rounds and write up her discharge papers! We knew it would be several hours, but we didn't care.
We hauled our hilariously old and gigantic consignment car-seat up that elevator and into the NICU proudly! The receptionist for the NICU raised an eyebrow at us this time. She'd become accustomed to Brian and I being two of the most frequently-visiting NICU parents out of the many other mommies and daddies. She also recognized us as the couple who brought the largest number of family and friends to see their baby on a regular basis ;)
"Oh, is today the day for the Powell baby?" She asked.
"It IS!" I think to describe us as "beaming" would've been an understatement.
After about 4 hours of waiting, the head neonatologist, Dr. Brady, came and gave Avonlea her final little exam! He cleared her for discharge, and the discharge nurse, Shea, who'd called the day before came and gave us all of the "duh" information they're legally obligated to tell you before you bring a baby home: "Lay the baby on her back… Always call your pediatrician if the she develops a fever… Don't shake your baby."
They disconnected all of the little wires that had been strapped to her ankles connecting her to monitors, the machines that had been precariously perched nearby throughout Avonlea's entire existence thus far to notify the nurses of heart-failue or a sudden halt in her breathing, the monitors that had never sounded.
The walk out of that long hallway exit of the NICU felt like a strange mix between a victory-walk, and a mistake.
This is really happening. Avonlea is coming home! She is coming home to LIVE… no hospice. No tubes in her neck or stomach… no morphine to "make her comfortable." No patronizing looks from the nurses on the way out. We're taking her home. To her house. To her LIFE!
This can't really be happening. Someone must have made a mistake. She's not supposed to be healthy, or compatible with life. Any second now, someone's going to realize the error and come running after us, take her out of this car-seat and put her back in her NICU basinet and strap those monitors back on her ankles.
But no one did come after us. They let us walk right out the door.
On Thursday, March 13th… on Trisomy13-Awareness Day... Avonlea got to come home from the hospital!
It was cold as we exited the hospital directly into the parking garage with Avonlea in-tow in her car-seat… We hurried to get her secured in the car and get the heat going. Our baby was looking all around in confusion. Her entire life had been spent in that NICU… and now all of a sudden, everything around her was strange and unfamiliar. She whimpered as we drove over the speed-bumps in the parking garage, but as we exited the dark structure and drove out into the sunlight, her entire world seemed to completely unfold before her eyes. The small, dimly-lit cubicle that had defined her existence up until this point had transformed into bright, colorful vastness.
Sitting in the backseat next to her and watching my daughter experience the warmth of sunlight on her face for the first time was a moment I'll never forget.
It was a moment of reflection back to that horrible phone-call received in the Kohl's parking lot. It was a moment where proof of the big, BIG power of my God was embodied and sweetly made real to me.
In this moment, I physically felt the Lord lift the last 11 weeks and 6 days of despair, worry, confusion and anxiety off of my shoulders and felt His words wrap around me, "…know this torment no longer, daughter. Have a life now with your child..."
This moment was grace.
Welcome to the world, little one. Let's go home...