Sunday, April 24, 2022 started out as a beautiful day.
It was sunny and unseasonably warm.
All week long, I had been suffering from what I thought was a severe
sinus infection. I had a terrible cough and heavy sinus pressure and pain.
I would later find out it was actually a case of Flu.
But on this day, I was finally feeling better. My cough was subsiding
and my energy was back.
I was supposed to meet a friend around 11am for a few hours to enjoy
a foodie festival in town
and later on I planned to take my two boys, 3 and 1 at the time, to the pool
with the help of my husband.
I was 23 weeks pregnant exactly on this day.
I got up and went about doing my usual morning routine of
straightening beds and couch pillows, making coffee,
putting on makeup and getting dressed among other things.
That's when I realized that my shorts were wet.
Some fluid had leaked out when I coughed,
even though it wasn't as harsh of a cough now.
Had my bladder leaked? I was grossed out with myself,
but changed my clothes and shrugged it off.
Then more fluid leaked, without a cough this time.
I changed again.
It happened a third time.
I mentioned it to my husband, who was up now with our boys.
He was right away concerned.
I knew I should be too, but I was in denial.
The day after Christmas, 2021, I went to the ER.
I was only six weeks pregnant then,
and I experienced a little bleeding.
I had never had even a hint of blood with my first two babies,
so I was almost positive that I was in the early stages of a miscarriage.
Shaken and crying, I went in to see what could be done.
All they could do was take an ultrasound but it was too early to see anything.
They took blood and looked at my HCG (pregnancy hormone) levels.
They were within the range they should be, but progesterone was low.
Two more follow up tests in the week between Christmas and New Years
were somewhat inconclusive. Levels were rising, but not correctly.
I was put on progesterone.
I was too scared to go to my ultrasound the first week of January,
and nearly cancelled it.
For some reason, I was so sure I would find an empty womb
and I just couldn't handle that. I don't know why.
To my relief, there was a seven week fetus with a tiny flickering heart.
But I never forgot the long, emotional nights of thinking I was going through
my first ever loss.
I had had quite a bit of thyroid trouble this pregnancy.
It was a new problem that I didn't suffer from in my past two.
Other than that, things were going fine.
There hadn't been any more bleeding, baby was growing as expected.
I didn't have contractions.
Yet here I was, on the morning of 23 weeks and 0 days,
and I somehow knew it was my water that had broken,
but didn't want to face it.
My husband took no risks and wasted no time leaving me at the door
of the labor and delivery ward of our local hospital that day.
He couldn't stay because they wouldn't allow our boys in.
I sat, alone, on a bed in a room with an incubated bassinet in the corner,
and awaited test results.
I wasn't supposed to be here.
Not for another three months.
I was supposed to be here at 37 weeks or better,
a huge belly, in natural labor, excited to meet my little one
not in terror for his future because he was so tiny.
I didn't belong here.
It was wrong, like when the groom walks in on the bride
in her dress, before the vows
or when you find yourself at the manager's desk
in the middle of a workday,
because you are about to be fired with no warning.
I was a teary mess as the nurse looked at the baby's measurements on an ultrasound.
He was only one pound.
A nurse came in and confirmed my worst fear- my water had, indeed, broken.
I didn't know what the protocol was when this sort of thing happened.
I honestly thought that maybe they would wheel me back to surgery
and sew something up down there,
then send me on my way the next morning
with strict instructions to rest as much as possible.
That was not the case.
There is only one choice when an expectant mother faces possible
extremely preterm birth:
go to the inner city hospitals of Jacksonville to be held for observation.
I would have to be transferred to Shands because their NICU
was high level and one of only a few equipped to save a 23 week baby.
I called my husband, and within an hour he was there at our local hospital
to say a tearful goodbye and let me hug our boys,
whom they allowed in for just a moment.
Then, I was loaded on a stretcher and moved to an ambulance to be transported
efficiently but without sirens
more than 40 minutes away.
I wasn't in labor.
I didn't have even a twinge of contraction pain.
But they didn't know what was going on.
I sat in a tiny triage room in this very worn-down inner city labor and delivery ward.
The bed was hard and painful.
The window was very small like a prison window.
The room was dingy.
I tried to scroll through my phone and not worry,
but I was hungry and not allowed to eat.
I had a full bladder but was told not to get up to go to the bathroom.
I was terrified.
And I was still coughing some, but with no medicine or Tylenol it was causing
a major headache and some aching in other places too.
I was kept in that little triage room for at least few hours
before being moved to a standard labor and delivery room-
another one of the birthing rooms with an incubator in the corner.
I was hooked up to machines to monitor myself and the baby
and given a catheter so my bladder wouldn't be an issue.
I still was not fed.
Finally, at 10pm that night,
I was moved to an antepartum room.
It was also fairly worn and dingy and reminded me somewhat of a motel 6.
The windows had a view of the roof of the adjacent building and some air conditioner parts.
It was bleak.
I was exhausted and sad and scared.
I ate a plain chicken salad sandwich in the dark and went to "sleep".
It was a difficult, restless sleep.
When your water breaks so early,
It's clinically called "PPROM" or premature partial rupture of membranes.
If this happens, labor and dilation of your cervix will likely follow within a few days
if the person isn't kept on bedrest and given IV fluids and monitored carefully.
Since the baby is so tiny, it can happen quickly and there have been cases where
the woman was up walking around and suddenly gave birth in an elevator or hallway.
So I was not allowed to leave my room.
I was allowed to go to the bathroom, or get up and get something from my bags but that was all.
When PPROM happens to an expectant mother,
the hospital's goal is to keep the woman on bedrest until 34 weeks or better.
In some cases, if she sits tight on her bed, she gets all the way to full term.
I didn't expect to get that far, but I did think I could try to hold out until 34 weeks.
That was 11 weeks away.
It was late April.
11 weeks was early July.
I would miss most of the summer with our three and one year old.
I would miss our wedding anniversary.
I would not be there to keep up with our apartment and
my husband didn't really know how
to clean it the way I did.
He wouldn't be able to work.
He wouldn't ever get a break from the boys,
as every human parent with small children needs from time to time.
Everything would screech to a halt.
And I would possibly lose my sanity spending nearly three months
not ever going outside or even out of my room,
just playing on my phone and watching TV All day.
But I would do it to save our little unborn third son.
I didn't ever make it that far.
On Friday, just five days after I was brought to this hospital,
I started to experience sharp pains that radiated around my hips and lower abdomen.
They were just here and there at lunchtime.
By bed time, however, they had picked up and gotten much more painful and frequent.
They also included my back.
I was given Tylenol, muscle relaxers and IV fluids.
Nurses thought maybe I was just a little dehydrated.
By midnight, I couldn't go to sleep.
I called for help.
I was taken to triage again,
and left on a hard little bed, hooked up to a few monitors,
while nurses attended to other women who were in much more dire straits.
Every two minutes or so, there was the pain.
I cried out.
I wanted someone to come and give me pain medicine or do something
but they were busy in other rooms.
My husband was asleep back at home with our boys.
My parents were at home in their town.
My friends were all asleep.
I was alone.
A nurse finally came and gave me some kind of treatment plus more fluids.
At 5am, the contractions seemed to stop.
I was moved back to the room in labor and delivery with the incubator.
I was left nude from the waist down, strapped to many devices,
catheterized and kept there all day for observation.
I dozed off and on.
I was only given jello and broth and water.
I was still coughing some, now more from stress,
and that made me sick at one point.
But the pain was gone.
At 4pm, I was finally moved back to antepartum.
I called my husband, crying.
I had spent nearly a week making peace with God and in my soul
about staying here all summer to give my baby the best odds,
but I never considered that I might go through spells of contractions and pain like this.
What if it was going to come back in a few days?
What if this whole ordeal of being moved to uncomfortable triage for hours
was going to be repeated on a weekly or even three times weekly basis?
I didn't think I could cope with the pain.
How would I?
How did other people with chronic illnesses or pain do it?
Oh right.
Meds.
I wasn't allowed to have morphine or oxycodone, nor could I tolerate it.
I would just have to suffer.
I felt like I completely broke down that night.
I still had random pains in just my lower back.
A nurse said it most likely was a combination of the beds and my stress.
Exhausted, I eventually fell asleep despite it.
That is, until about three in the morning.
I was woken up from a dream by an intense cramp in my back.
"Here we go again" I thought.
I didn't want to call anyone.
I didn't want to go back to labor and delivery and go through this again.
The pain was ONLY in my back, not my abdomen this time.
I prayed that it truly was just a symptom of stress, and tried to sleep.
It kept stabbing me here and there, but I still tried to rest.
Finally, I got up at about 6:00 am to use the bathroom.
That was when I realized something was very wrong.
Sitting in the bathroom, I felt pressure.
Something was there, down below.
Something was causing pressure in the "canal".
I panicked.
A nurse was in the room getting her computer set up to do vitals.
I called out to her and asked what to do.
She went to get a doctor.
I went back to my bed,
and the doctor came to examine my cervix.
"The cervix is fully open and the baby is trying to descend.
The pressure you felt is his head. We will move you to the OR
right away" She said, matter of factly.
I didn't have time to think, plan, even cry about it.
I called my husband and asked him to get here as soon as he could,
even though I knew that was still hours from now.
Within minutes, I was in the OR.
I was being told to push.
I didn't get an epidural, but I didn't need it.
This baby only weighed a little over a pound.
After only three pushes, he was out.
At 6:44 am on May 1, 2022, an OR surgeon lifted up my tiny baby boy.
His skin was translucent and red. His eyes were fused shut.
His mouth opened and chin quivered to cry, but no sound came out.
They cut his cord and whisked him away, before I could ever touch or hold him.
He was exactly 24 weeks along that morning.
Still laying on the OR table under the lights as doctors rushed around cleaning up blood,
I called my husband.
His first question was "Is he alive?"-
A very valid and logical question but somehow it kind of hurt my soul.
Yes, he was alive. I saw him move.
But for how long?
How long did he have?
On my second day in that hospital, a NICU doctor came to my room
and explained to me how they decide if a micro preemie was viable or not.
It all had to do with the size of their little mouths and if a tiny breathing tube
could successfully be snaked down into their minuscule lungs or not.
He said that in some cases, a 22 or 23 week baby was big enough.
In other cases, a 25 week baby wasn't,
and all they can do is keep them comfortable
until they stop breathing.
If I could just get him to 24 weeks,
my chances of him being viable were better.
It was like getting a barely passing grade on an exam.
And here we were... on the morning of 24 weeks and 0 days.
After what was probably only 15 or 20 minutes, but seemed like hours,
a doctor came back into the OR to my bedside with a rolling incubator.
my tiny newborn had been resuscitated and successfully intubated.
He had been bundled up in several blankets and a little knit cap placed
on his head.
All I could see of him was the oxygen tube emerging from the bundle
and his teeny tiny little nose twitching intermittently.
A monitor screen showed his heart rate and oxygen levels.
I couldn't touch him.
I could only look at him through the panels and say my praises that he was alive
but solemnly apologize to him for all that he had just been through.
It would be nearly noon before my husband found childcare
and could make his way to downtown Jacksonville to see his baby.
He got to meet him in the NICU first.
I should have been there all along,
but after I was taken from the OR,
I was kept in the same labor and delivery room again
to deliver the placenta and then be monitored for a few hours
for signs of hemorrhaging.
Once taken back to my antepartum room,
I was told that I couldn't go to the NICU due to having a positive test for flu.
That test had been administered when I arrived the Sunday prior.
I demanded another test.
Thankfully, after a few hours, I got that test and it was indeed negative.
Sometime between 4 and 5 pm that day,
which was nearly ten hours after my baby was whisked away from me
without my ever getting to hold him,
I finally was able to sit next to his isolette.
I was wearing a plastic gown like a rain poncho,
but it was nothing compared to the host of tubes and wires going in and out
of seemingly every orifice of my precious tiny son.
He had chest tubes, IV lines, his breathing tube, his pulse ox and more.
Screens and monitors blared.
Every time his oxygen or heart rate dipped below a certain number,
all kinds of alarm bells went off.
This NICU was also one of the ones with every baby in one large center
instead of having private rooms,
and the cacophony of alarms going off everywhere reminded me
of a casino I went to in New Orleans once.
Minus the jingle of coins.
Nurses and doctors hustled around from isolette to isolette running tests,
giving reports,
talking to parents.
Occasionally too many alarms would go off for my baby
or someone else's,
and seemingly every nurse on shift at that time would gather around that baby.
This would become my son's "home" for seven weeks.
I would report here every day, usually between the hours of 10am and 5pm,
Monday to Sunday,
for that entire seven weeks.
My husband would only get to join me a few times.
On Monday, the second day of my son's life,
I was still a patient at that hospital and had not been released yet.
I went up to the NICU several times
but the last visit of the evening went differently.
Something was going on, I believe x-rays were being done to him,
and they weren't ready for me when I arrived.
They asked me to sit in a little room off to the side of the lobby to the NICU.
They said I would only have to wait ten or fifteen minutes,
but it was more than half an hour.
I believe the doctor who came to the room to find me
told me that my son had a bradycardia,
or steep drop in his heart rate, and they were working on steadying him.
He was okay in the moment,
but his doctor sat down with me in that little side-room
before I could go in to see the baby,
and wanted to go over some statistics with me.
He showed me a chart with lists of complications that preemies can have.
He told me about the low-grade brain bleed that was found,
the PDA or extra ventricle in my son's heart,
an issue that normally rectifies itself when a baby is full term
but sometimes requires surgery when they are born so soon.
The chart he was showing me started out with listing small complications,
such as the baby needing glasses for eye issues that are common in preemies
and going all the way down a gradually worsening collection of scenarios
to where the baby is blind, deaf and wheelchair bound with severe cerebral palsy.
The only worse outcome would be losing the baby
all together at some point on this treacherous NICU journey,
a victim of a condition such as NEC,
which is basically the death of the intestines.
I felt very lost, like I was falling infinitely through a void.
What quality of life did I just doom him to, having him so early?
It wasn't as if I had tried to go into labor and give birth
only half-way through my pregnancy,
but at the same time, could I have stopped it if I tried harder?
There was no way to know.
I was released the next day, Tuesday, and my husband came to bring me home.
Leaving without my son felt just as wrong as having him taken away
to a back room before I could hold him when he was born.
This was not just because of having empty arms,
It was also because I knew he was struggling away, fighting to live
back in that NICU and I wasn't there for him
like I was for my two full-term sons.
I couldn't stay because I needed to go home
and help my husband parent them.
After seven weeks,
the baby had grown and advanced some to looking more like a regular newborn
his eyes were open,
his skin was more like a normal baby's skin,
he was more than two pounds
but his boy-parts swelled up to three times their normal size overnight.
I pointed it out to a nurse.
They had noticed something, but it wasn't until I called attention to it
that they started looking into the cause.
Later that evening, at home, the NICU called me to inform me
that it was discovered that my son had a hernia.
It was actually a fairly common occurrence in preemies.
Unfortunately, they didn't have a surgeon on staff who was trained
to repair the issue in babies so small.
They were going to begin the process of transferring my son to Wolfson's.
It was a nerve-wracking night for me,
I tossed and turned knowing he was getting loaded into an ambulance
and moved to a different NICU,
but it turned out to be a huge blessing.
Wolfson's had just had a new state-of-the-art NICU built.
It had private rooms.
My son was now in his own serene, quiet little space
with a fold-out couch and bathroom included.
If I needed to, I could stay there, shower there, sleep there.
I wouldn't actually need to until the very end of the journey,
when it was time to train for feeding him during the night
before discharge.
From the end of June until the beginning of November,
my son would bounce from the third floor NICU,
which was the higher intervention level,
to the fourth floor, to the fifth floor.
The fifth floor was for babies who needed little intervention and could soon leave.
He would then suffer a few setbacks and return to the fourth floor again.
I would continue to drive downtown by the river in the city
every single day, rain or shine.
I was there on July 4, my birthday, our four-year-old's birthday, Labor Day, Halloween.
My son would eventually reach "feeder and grower" status.
His PDA healed up, he was not having bradycardia events much anymore,
and he was mostly out of the woods.
But he struggled with feeding.
He would make progress, then have bad days where he couldn't take a bottle.
Attempting to breastfeed made him too tired and winded to take bottles
which set him back.
Ultimately, the decision was made to give him a G-tube.
My baby would go home with a hole in his stomach that had a device
protruding from it that looked sort of like
the part of the beach-ball you blow into to inflate it.
I didn't want my baby to have a surgically created hole,
but I didn't want him to spend Thanksgiving, Christmas and probably
six more holidays after that
still in the NICU.
On October 20, 2022, his surgery was conducted.
After they gave him the g-tube, they went in and sewed up the hernia
so that his very swollen manhood could finally be a normal size again.
It had been causing him pain and even some gastric distress.
After the surgery, he only needed a few weeks for observation
a window long enough for them to see if anything was going to go wrong
with either surgery.
I stayed overnight to learn how to feed him.
My husband stayed overnight the next night and I stayed home
with our two boys.
I stayed all day to keep practicing.
And then finally,
the Friday after I took our boys trick-or-treating for Halloween,
our little one came home.
His discharge was quick and actually a little anticlimactic.
He was rolled in a red wagon down a quiet hallway by a nurse.
He was six months old and at least 12 pounds.
Just like that, a terrifying chapter was over.
He was finally home.
We could actually live as a family of five,
instead of a family of five living as a family of four.
He was there for Thanksgiving, Christmas and New Year's,
but he did make four ER visits and three overnight trips
to Wolfson's Children's Hospital
for respiratory illnesses.
We finally figured out how to prevent the illnesses from getting out of hand
with nebulizers and medicine at home
and then we championed through the rest of the winter,
Valentine's Day, my husband's birthday, my two-year-old's birthday, Easter
and then finally we came full circle to May 1, 2023.
He had done it.
He had pulled through all of the odds and survived his first year.
Not just survived,
Thrived.
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