All photos in this post taken by Cheyenne Schultz of The Schultzes Photography
I cannot even believe that as I write this, sitting on our bed with my macbook, I have my baby snuggled against my chest.
Oh if I had a nickel for every time either of us have cried from joy over the last 2 weeks...
I apologize to those of you who've come to the blog for updates on Baby Avonlea and have found only outdated posts of frustration and despair. So much has happened in the last week and a half, we've barely had time to eat and sleep, much less blog.
I suppose I should start from the beginning...
On Monday, March 3rd, we had an OB appointment. I was 38 weeks and 6 days! We'd made it to March 1st, praise the Lord, and were already tired of waiting for Avonlea to decide she was ready to try and be born.
The nurse escorted us into the room and proceeded with the normal routine: test for protein in my system with a litmus strip, ask me if i've felt the baby moving, if I've felt dizzy, short of breath, or if I'd been vomiting, take my blood pressure, and finally listen to the baby's heartbeat before the OB came in.
As the nurse washed her hands after testing for protein I noticed she stared at the litmus paper just a little TOO long...
Protein in my system is symptomatic of preeclampsia. We knew that with Avonlea's diagnosis, my risk for contracting preeclampsia was elevated, but I'd made it this far with no signs or symptoms of it.
Then she asked the usual questions... I'd thrown up twice in the last week. I thought I'd just been eating too much greasy comfort food, but I'd called the OB's head-nurse and talked with her about it. She had agreed it sounded like it was just something I'd eaten, so I hadn't been concerned... until now.
The nurse asked me if I'd been feeling the baby move okay... I said yes, but that was a half-truth. I hadn't felt her move since about 5am that morning, and it was about 1pm. I'd mentioned this to Brian only moments before we'd been called back from the OB's waiting room so we were both a little tense with wonder.
She took my blood pressure. Her face told us the number wasn't good. She took it again... still not good.
She got out the fetal doppler. As soon as that probe hit my abdomen, there it was. Our baby's heartbeat. Thriving waves of life. She was still alive, thank God!
The nurse had me lay down on the exam table on my side and tested my blood pressure a third time about 10 minutes later. It was better, but still high.
She told us the OB would be right in and left the room. Brian hopped up and found the key for measuring the results of the litmus test under the counter. He raised his eyebrows... "It's a little high, Melissa."
We heard whispers, doctor and nurse consulting just outside... then we heard our OB's voice clearly through the door. He was calling someone on the phone.
"Hey man, what's happenin'?" It was as if the doctor was there in the room with us- it was that clear! "Do you have any room over there for an induction for mild preeclampsia?"
Brian's and my eyes locked. WHAT! Is this happening right now?
Our OB entered the exam room and gave us to run-down. My blood-pressure was up. There was more protein than they like to see in the litmus test. Since we were basically at 39 weeks, the baby's development was far enough along that there was no point in waiting another week to see if she would come on her own. There was a higher risk to me in postponing an induction than there would be to Avonlea in inducing now. The doctor checked my cervix- I was only 1/2cm dilated and 50% effaced. He doubted, based on this, that I would go into labor naturally before my preeclampsia symptoms progressed to a dangerous level.
He recommended we be admitted to the hospital that evening (Mon. March 3rd) to prep for induction, begin a pitocin at 7am the following morning (Tues. March 4th), and depending on how long it took the pitocin to take affect, deliver Avonlea sometime the afternoon or evening of Tues. March 4th.
We asked if we could talk about it privately and the doctor gave us the room. Brian looked at me, "Is March 4th a good day for Avonlea to be born?"
March 4th is our niece, Isabella's birthday. She'd be turning 4 years old... With Avonlea only standing a 20% chance of surviving birth, and after that, even slimmer chances of making it longer than a few hours (maybe days), we talked about how this would affect sweet Bella. If Avonlea died on Bella's birthday, her special day would forever be plagued with heartache for our family. Also, Brian and I would be especially reminded every year on our own daughter's birthday, possibly also the anniversary of her passing, that we would not be throwing our baby a birthday party... that we would never be throwing our baby a birthday party.
In addition, our OB had told us which doctors were on-call at the hospital over the next couple of days. One of our favorites, Dr. Clarke, was on-call for delivery on Wednesday, March 5th!
We asked what the potential risk would be in postponing the induction by 24 hours. The doctor said that my symptoms were mild enough that this might be possible, but he ordered some blood-work to make sure my liver was not affected enough by the preeclampsia symptoms that we'd need to induce immediately. The blood-work came back a couple of hours later, showing a healthy liver which let us know it'd be okay to wait to go into the hospital until the following evening and induce early the morning of Wednesday, March 5th.
Well, this was not in the birth plan!
But FINALLY, some certainty. Between spending the entire third trimester wondering if Avonlea would pass away in-utero, spending all of February hoping she would wait until March for insurance purposes, wondering what was going to happen to our baby during labor & delivery and then after birth if she survived... we'd been internalizing so many unanswerable questions. So many possibilities had been laid before us and none of them were what we'd expected or wanted for this pregnancy or for our baby. But finally... we had a plan. A deadline. Whatever was going to happen to Avonlea, it was going to happen in about 36 hours.
We made phone-calls the rest of the day. Friends from out of town bought last-minute plane tickets, packed for a potential funeral, and made arrangements with their jobs in order to be here for the birth. Family members began preparing to drive home. We came home and did all our laundry, all of our dishes. We picked up the house and polished off our birth-plan and sent it to the wonderful ladies at an support-organization called Be Not Afraid who'd been helping us think through our desires for our birth and for Avonlea's neonatal care should she survive birth. They sent our birth-plan to the nursing-staff, the NICU and neonatology staff, and chaplain at Presbyterian Hospital so that everyone would be on the same page as us. We finally crawled into bed in the wee hours of Tuesday morning and prayed together through tears of anticipation and fear.
I laid awake in bed for hours. Around 4am, I knew something was wrong. I was feeling a cramping in my abdomen, or was it just that I had to go to the bathroom? When I went to the bathroom I saw something I'd been dreading and praying against for 9 whole months: bright red.
I'm bleeding. This is it... this is the "fetal demise" they've been warning me about. She's gone.
I woke Brian up and told him something was wrong- that I was bleeding. We both began to panic. I sat back down in bed and picked up my phone to call the emergency after-hours number for our OB's office.
As I began to dial the phone, I felt a gush of fluid!
I started crying uncontrollably, probably ugly-crying, unable to breathe normally, thinking that I was hemorrhaging. My wonderful, cool-headed husband wrapped his arms around me and started laughing.
"Melissa, you're not bleeding, your water just broke!"
"NO!" I argued with him. I was in full-on panic mode. I hadn't been dilated or effaced enough just hours ago to be going into labor right now. And I'd just seen a drop of blood! This was not my water breaking... it couldn't be... could it?
By the time I got through to the after-hours nurse about 10 minutes later, I was already in the car, sitting on a towel, being driven to the hospital by a speeding, entirely-too calm and collected Brian.
When we arrived on the labor & delivery floor at Presbyterian, and tried to check in, the nurse at the desk began typing my name and then paused. "Um, Mrs. Powell, you're early. You're not supposed to be admitted for your induction until 7pm this evening..."
"Well, my WATER BROKE. So... what're ya gonna do...?"
Ha. The nurses didn't believe me. They made me do a litmus swab to see if it was really my water that'd broken."
I was admitted immediately and ushered into a beautiful "delivery suite." Presbyterian Main has some pretty luxurious birthing accommodations, in case that's the deciding factor on anyone's pro/con list between Presby and CMC. I got changed out of my clothes into the super-flattering hospital gown and got settled into my hospital bed, preparing myself mentally for hours and hours of pain ahead. Both physical, and emotional.
My contractions felt like heavy menstrual cramps. My instinct was to hold my breath. We'd elected to skip our child-birth classes, so everything was new and confusing. I had no idea what to expect, what was normal to feel or how to best deal with the discomfort. All I remembered that anyone had ever told me about labor was to fight the instance to hold my breath and just... breathe.
Our pastor, Phud, arrived after a couple of hours. Yesterday, we'd thought we would have a whole extra day to get our birth plan printed (it was a color-coded flow-chart, and our office-printer only prints in black and white), so we'd asked him to print out a couple of copies for us and bring them with him when he came. A nurse entered as Phud was arranging the pages of the very long and painfully detailed birth plan, and we handed a copy off to her.
Phud had also been helping us think about arrangements we'd want made for Avonlea's funeral. Throughout those last few months of pregnancy after receiving her diagnosis, we couldn't really bare to do the necessary research or make phone calls and Phud had graciously been doing that leg-work for us. Up until those final hours before her birth, we had most of the decisions made and her memorial service was basically already planned. We had a church, cemetery and gravestone picked out... all that was left was to decide on a funeral home and make sure we had a funeral director who would be comfortable coming to the hospital to pick up her body "at bedside," (from our hospital room, so that we wouldn't have to send her body to the morgue). Phud told us while he was there that he'd finalized arrangements with a funeral director before he came who had agreed to do this in the even that Avonlea did not make it through birth or only lived a short time after delivery.
The nurse who took the birth plan was in the room while we discussed all of this. My guess is this was not the usual type of conversation she was used to overhearing at her job.
At some point a little later that morning, a neonatologist from the NICU came in to introduce himself, consult with us and make sure his staff was clear on what our wishes were for Avonlea's care should she survive birth. We knew that Trisomy 13 babies who are born alive have a very high probability of needing respiratory assistance once the cord is cut; their brain-stems are often not developed enough for their lungs to breathe properly. We had decided that we wanted Avonlea to be given as much respiratory assistance as she needed WITHOUT putting her on a ventilator, a machine akin to life-support that we'd eventually have to make a decision on as to when to "pull the plug." Trisomy 13 babies who are put on ventilators have almost no chance of ever being able to improve enough to come off of the ventilator, since they generally fail to thrive. We didn't want to play God and put her on a machine that was essentially living FOR her, prolonging suffering, that we'd eventually have to make a decision to take her off of and end her life.
We reiterated this to the neonatologist. His response and tone were somber... he told us to prepare ourselves for things not to go well, for our baby to need a ventilator in order to survive and that we needed to understand that without the ventilator, we would probably not have much time with Avonlea. He told us, also that there was still a possibility that she could have facial disfigurements, even after I showed him her 3D ultrasound photo. He said 3d ultrasound images didn't REALLY prove anything.
The last thing I remember the neonatologist telling us was to prepare for our baby not to have any quality of life. I stared at him blankly and nodded, holding back tears until he patted my arm and left.
...I have Jesus. Therefore, I have hope. He is bigger...
I labored for about 8 hours total, with mild contractions. It was the fastest 8 hours of my life! Literally. I cannot recall any other period of time that seemed to pass so quickly. Brian and I both commented to each other how fast those hours seemed to fly. It was weird. You'd think with the pain of labor, it would be the opposite!
I had an epidural at about 10am, about 6 hours into that 8-hour labor.
BEST DECISION EVER.
Hands down, no questions about it.
I probably could've postponed the drugs a little longer than I did, my contractions at that point were still so mild. But I was only 2.5cm dilated after 6 hours, so I knew we had a long ways to go. Plus, my contractions had only been about 4-5 minutes apart since my water broke, and even though they were mild now, knowing it would be such a long time before I was dilated enough to push meant that I had a LOT of time left for the contractions to worsen. Drugs please!
Once the epidural took effect, Brian and I both were able to catch about an hour and a half of much-needed sleep. As soon as we'd gotten settled into the delivery room upon admission , I'd told Brian to sleep as much as he could- I knew I was going to need him more than ever once my labor progressed, and I wanted him to be as rested as possible. He even tried wearing ear-plugs, but between the nurses and doctors coming in several times every hour, his efforts were to no avail. That hour and a half that we actually got to sleep was precious, vital.
The OB from our practice who was on-call and would be delivering Avonlea was Dr. Heron-Davis. I had only seen her once throughout my entire pregnancy! Out of all 7 OB's, we'd assumed she was probably one of doctors who was LEAST familiar with me, Brian or our case since we hadn't seen her more than once. I had been nervous about this until now, but after 8 hours of several different complete strangers walking into my room as they please, sticking me with needles in all kinds of places and after having 3 different doctors checking my cervix throughout the past 24 hours, I was kind of over it.
Whoever's present and qualified: do what you need to do to get this show on the road!
Around 11:30ish, Dr. Heron-Davis checked to see how far i was dilated for the last time. Brian was still sleeping in the pull-out bed in the corner. This was the first time my dilation had been checked since the epidural, and it was the first time having my dilation checked hadn't been THEE most painful thing about my labor experience.
"Maybe 4cm dilated? And probably 80% effaced?" Her face showed concern.
I hear her heart beating on the fetal monitor... What could be wrong?
"I'm not feeling her head... Let's do an ultrasound."
I had the nurse wake Brian up. His hair was an utter disaster. While I was functioning mildly on nothing but adrenaline, his cool head was heavy from lack of sleep.
When the nurse pulled the blanket off of me for the ultrasound, I don't believe anyone in the room had a doubt in their mind that this baby had turned breech. The right side of my belly was protruding noticeably higher than the flattened left side! The ultrasound confirmed it...
"We're gonna need to do a C-section."
From then on, everything is a giant blur... nurses came in and out, hooking and unhooking things. I remember lots of voices in the background, and a lot of rushing around me. I remember looking at Brian, turning to look at the anesthesiologist as he pressed the button several times to increase the amount of pain meds being administered via the epidural... then looking back at Brian again to find him already dressed in scrubs with a little cap over his messy hair. He looked kinda like an astronaut. The cutest astronaut ever, I might add.
I asked one of the nurses, "Is this an emergency C-section?" Why else would everyone be rushing around like this?
She said no... but with the baby being breech, I would not be able to deliver normally. There was no longer enough fluid for the baby to turn back head-down on her own, and attempting to turn her manually would be dangerous to her. Since a C-section would be our only option at this point, and the O.R. was available, there was no reason not to move forward now.
They rushed Brian out of the room, telling him he needed to wait in a separate room until the O.R. was ready. Someone said something about the operation starting in about 15 minutes. One by one, the faceless bodies that had been causing so much background noise filed out of the room and suddenly, I was alone.
I felt my lower-body going more and more numb as the drugs continued to take effect. It felt like there was a 2-ton boulder pinching me down onto the bed, cutting off my circulation and making my head spin.
I looked up at the ceiling and it hit me. These are my last few moments to be pregnant with Avonlea...
20%. She has a 20% chance of surviving outside of my womb. These could be her last few moments without a breathing tube intubated through her neck... These could be her last few moments of LIFE, before her life had really even begun.
I started to cry. I prayed out loud...
"Lord, I want this baby. We want her so bad... But if your will is to take her, I'm willing. I'm willing to give her back to you."
I said this over and over. And I finally meant it.
I remember feeling like they wheeled me through the door of my delivery room and straight into the O.R., like the hallway disappeared and I was teleported across the labor and delivery floor.
I remember Dr. Heron-Davis standing next to me, holding her freshly-scrubbed hands in the air as she read the surgical team in on the details: patient is Melissa Powell... 39 weeks gestation... fetus has Trisomy 13...
Suddenly Brian was at my side, in his adorable astronaut scrubs, wearing a surgical mask. All I could see were his eyes, but I've never seen more emotion in those eyes in our 5 years together. He was afraid... I was afraid too, but somehow I was also very much at peace. I knew our baby's diagnosis. I knew all of the statistics. I knew all of Avonlea's anomalies. I had a bunch of numbers, percentages and stories that up until this moment, led to nowhere. The possibilities were all over the spectrum. No amount of information, counseling or education could have realistically prepared me or Brian for what was ACTUALLY going to happen to OUR baby.
This was it.
Brian held my hand. He tried to watch the beginning of the surgery, but sat back down once they cut me open. I asked him if he was horrified and he nodded. On the other side of a thin curtain, doctors were slicing into his wife...
We both teared up... this was really happening.
We heard Dr. Heron-Davis's voice say "We're about 15 seconds away from the baby." Brian finally stood to see over the curtain. I watched his face as I distinguished faint pressure of the surgery in my core. Tears were flowing down Brian's face and his eyes were sinking deeper and deeper behind a veil of anticipation as I felt them pull my baby out of me.
The doctor: "The baby's out now..."
There was total silence in the operating room, besides the beep of a machine somewhere faintly chirping away in the background. It was probably only about 3-5 seconds of that silence, but it was the longest 3-5 seconds of our lives. It was the 3-5 seconds that was going to determine our baby's fate: her life-span, her quality of life, whether or not she was even ALIVE at all... it all came down to those few seconds.
Brian saw her Avonlea's tiny body move. "She's alive..." he told me, but he didn't take his eyes off of her.
Lord Jesus, let her breathe!
Then, the most beautiful sound in the world!
...a BABY crying. Screaming, really...
Brian finally looked at me through the tears. "GO!" I told him, "Go be with her..."
Thank heavens. That man is gorgeous.
It felt like several minutes until another nurse appeared from around the curtain separating me from my surgery and all of a sudden... there was a baby.
My daughter, Avonlea
Right there in front of me, looking at me!
She laid Avonlea's head on my chest and Brian sat next to me and held her as I feebly tried to prop her lower half. I could only see one side of her sweet little face... her balled-up fist was raised and covering her right eye as the other eye squinted from the bright lights in the O.R.
But that one eye was looking right at me, piercing me with recognition, acknowledging me as her tiny body heaved bigger and smaller from the exhausting new obligation of breathing... breaths she was not even supposed to be able to take!
Oh God, she is breathing! She is beautiful.
Do you have any idea how many times we were told that we'd probably never have this moment with you?
I wanted to say to her.
But I was speechless.
All I could utter through my overwhelmed and humbled mix of emotions was "Hi, baby."
I just met my daughter...
Everything after that was a blur as well... they finished stitching me up and wheeled me into a recovery area. Brian came into my recovery "cubicle" and sat with me until a nurse came in and told him Avonlea was all settled into a space in the NICU and that he could go be with her. The anesthesiologist came in to check how I was doing now that the epidural was out. He was shocked that I could, at that point, not only wiggle my toes but also bend my knees and move my legs around. The nurses in the recovery room told me my blood pressure was very high, and that I'd need to wait to go see Avonlea until it came down. They put me on a magnesium drip to speed that process along... which they apologized for since apparently magnesium makes you feel very sick? I never did feel those side-affects, thankfully.
While I waited in recovery, I slept on and off for a few minutes at a time in between the nurses taking my blood-pressure over and over, my parents coming in to see me and the neonatologist and pediatric cardiologist stopping in to update me on how Avonlea was doing.
The neonatologist came in, essentially to eat crow and tell me that Avonlea was continuing to BREATHE ALL ON HER OWN! They'd put her on a little oxygen at first, and waited to see if she would develop trouble breathing and need to be intubated... She didn't! She kicked butt and continued breathing all on her own well enough that she didn't need the oxygen at all and, to use the medical terminology, was "on room-air." He told me this is quite uncommon for Trisomy 13 babies.
Then, my favorite of all of the post-op doctors' visits: Dr. Hammill, the pediatric cardiologist came in! He'd been the first doctor to advocate for the possibility of performing major surgery on Avonlea after we found out her diagnosis. The perinatologists had told us that doctors don't like to perform surgeries on Trsiomy 13 babies, because they are already considered "terminal," and putting them through major surgeries puts them potentially through more suffering when, ultimately, there's usually little that can be done to extend the baby's life long enough to make the surgery worthwhile.
But Dr. Hammill thought differently. He told us at our final ultrasound with him, "You know? All life is terminal... Your daughter is special with this mild heart defect being her only anomaly of concern. She may very well be able to handle the surgery necessary to repair it and be able to live for years..." It was the first time anyone had given us more than a grim prognosis... the first time someone had given us an assessment based on AVONLEA... not just the statistics. Of course, he said, we'd have to see how the birth went, and if she survived, see if there were any other anomalies that the ultrasounds hadn't picked up on (which was likely), and let HER tell us what she was capable of.
By the time Dr. Hammill came in to see me in recovery just a few short hours after the C-section, he'd already seen Avonlea and Brian in the NICU and done an echocardiogram. He said her heart looked the same as it had at both the 28-week and the 34-week scans. No better, but no worse. He also said he believed it was possible that now that she was born, for the defect to improve or worsen over the next couple of days, which would affect his recommendation for surgery. He wanted to watch it closely and do another scan the next morning, as well as another follow-up scan later in the week, to watch the heart defect's progress. Then Dr. Hammill asked if he could pray with me!
So, for now, this is where I will have to leave you all... this has been a long post, that took much longer for me to write than I'm guessing it took you to read! As I work on UPDATE PART II, know that much joy is to come as I tell the story of what came next for our little family in the hospital...
Thank you all for your faithfulness in praying for Avonlea! The Lord has heard our cries and has answered Brian & my biggest prayer: that He would use Avonlea to display his power and authority over life!
Stay tuned for PART II over the next couple of days!
“I know that you can do all things,
and that no purpose of yours can be thwarted.
‘Who is this that hides counsel without knowledge?’
Therefore I have uttered what I did not understand,
things too wonderful for me, which I did not know.
‘Hear, and I will speak;
I will question you, and you make it known to me.’
I had heard of you by the hearing of the ear,
but now my eye sees you"
~Job 42: 2-5