N.I.C.U. – A four-letter word that changed my life !

 

N.I.C.U. – A four-letter word that changed my life !

When I was a little girl I dreamed of falling in love, having a baby and living happily ever after.  Never in my mind’s fairytale could I imagine the reality of what might actually happen when I got pregnant.  A lot of people talk about the struggle to get pregnant, but rarely does anyone talk about what happens when you are pregnant….and you and your baby are both sick.

Until that becomes you.

I don’t recall hearing about the N.I.C.U ( Neo-Natal Intensive Care Unit…)

Or the P.I.C.U. (Pediatric Intensive Care Unit.)  Who knew that getting pregnant would also open up a whole new lingo of scary words and unpredictability… or a rolodex of new doctors that would become familiar weekly visits.  But this is my story.  This is my truth.  Being a N.I.C.U. mom changed me forever.

My husband Ron and I were full of joy when we found out we were pregnant and couldn’t wait for our lives to change.  I was 33 at the time and not yet at a place where I was considered to be of advanced maternal age … that starts at 35.  Everything seemed like it was going along normally, until I went in for my 20-week ultrasound.

This is the ultrasound examination where they:

1. Confirm the fetal heart is beating. ✔
2. Detect multiple pregnancies. ✔(only one.)
3. Measure the fetal size. ✔
4. Access the position of the placenta. ✔
5. Check the volume of amniotic fluid around the baby.  (Mine was abnormally high….??) Red Flag !!
6. Look for fetal abnormalities. (Ellington’s Kidney was slightly enlarged…) another… Red Flag !!

Ron and I left the ultrasound scared out of our minds. Being an optimist, I took a deep breath and said “Everything’s gonna be fine.”  As much as I wanted to believe everything was going to be fine, in truth, I knew something was dreadfully wrong. I had gained an enormous amount of weight in a short period of time and my doctor thought it was because I was over-eating.   I definitely took liberties being pregnant – ate more than I would have normally, and didn’t always eat the healthiest foods – but something felt off.   Of course I acted like everything was fine to everyone around me so I wouldn’t break down and totally lose it!   I was trying to hold it together.  Every day felt like a hundred hours long until we went back – a week later to rescan.   And that’s when I was put on bed-rest.

My doctor immediately ordered me to go on bed rest, because my body was producing too much amniotic fluid.   (Which introduced a new word into my vocabulary… “Polyhydramnios.”)   Polyhydramnios is the name of the medical condition resulting in an excess of amniotic fluid in the amniotic sac. It is seen in about 1% of pregnancies.  Call me…. Lucky.

There are many different causes for this and I don’t want to bore you with all the medical mumbo -jumbo, but basically – my stomach looked almost full term at 21 weeks.  To give you a visual… By 27 weeks my stomach measured the size of triplets.   At 21 weeks we were praying that I wouldn’t go into labor.  The excess fluid created pressure on my uterus and was tricking my body into thinking I was going into labor.  I can’t even describe the physical pain.   Let me take it back to 21 weeks and our follow-up appointment with the…  Perinatologist.

Perinatology: A subspecialty of obstetrics concerned with the care of the fetus and complicated, high-risk pregnancies. 

Then the news came that Ellington had something called  “Hydronephrosis.” Hydronephrosis is the condition where a back-up of fluid causes the kidney to swell in utero.  Translation:  Ellington had a blockage in his kidney and it was four times larger than it should be.  They didn’t know why.  All we were told was …  “we were going to watch it…”  We were sent to an amazing pediatric urologist who did the very best he could to keep me calm. Then he said “when he is born we would most likely have to perform laparoscopic surgery.”  I was told it was because he couldn’t swallow and wasn’t peeing out the amniotic fluid…  I was told every nightmare horrible horror story that  could possibly happen… because that’s what doctors have to do. Prepare you for the worst.   I was in a state of complete shock and disbelief. Ignorance is bliss.   Just let my husband deal with the doctors.   Let him deal with the big scary words…. and I’ll just pray and stay positive.

But every week the kidney got bigger.   And every week, my already-mammoth belly got bigger.

The next six weeks consisted of doctor’s appointments and sitting on my butt.  Trying not to overthink why this happened to us and would my baby be OK… Would I be OK…??   Trying not to suppress how much pain I actually was in….  Faking happy and normal around my friends and family so they wouldn’t worry.   It actually got so bad – one time I had to be rushed to the hospital and given intra-venous Magnesium to stop the contractions so my body wouldn’t go into premature labor.   Then the steroid injections into the baby that would help ensure his lungs were fully developed… even if he came early.

I was home with the hope that I could hold this baby inside me as long as possible.   As long as he needed me to.   I was very aware of all the possibilities even if my baby survived.  But again, I focused on keeping Ellington in my belly as long as possible –  even if I couldn’t sleep and wracking with pain – no matter what.  I lived with hot compresses on my back and logging down my contractions in a diary…..and taking whatever pain medication was allowed.  I’m such a doer…  being on bed-rest was nearly impossible for me.  Thank goodness I have such an amazing family and friends who visited me , cheered me up while I did my best “strong” act.    And the clock went tick-tock tick-tock.

Funny.  My mind goes blank.   As I’m writing this, it’s starting to get blurry… remembering details – certain things… dates and names?  It’s been nine years and this is the first time I actually really sat down and wrote about this.   I couldn’t have done it sooner.   Too painful.   Too scary.

OK back to my story.

Somehow I made it to 29 1/2 weeks. This was amazing!  All of my doctors were in shock because I was so massive and my water hadn’t broken yet.

I was being a good patient.   Staying off my feet and following all the rules.

But at 30 weeks my body couldn’t take it anymore.  I was at the breaking point.  My body was in so much pain it was going into premature labor.

I was now hospitalized – under supervised bed rest.

I thought I was being admitted to have my labor stopped…but with the  Polyhydramnios – they kept me there.   My home for the next few weeks was a little room where all the sick pregnant mommies go until they give birth.

Several times I was “tapped” like a beer keg.  A spout was inserted into my tummy and the excess fluid was drained into huge Sparklett’s-like glass jar.  Yes… my amniotic fluid was drained!   I had to be sedated because the sudden change of pressure in the amniotic sac signals the body “hey… water breaking… baby coming down !”   I couldn’t bear and didn’t look..  but my husband said it looked like strawberry lemonade.  Sorry, I know that sounds gross… but that’s what he called it.  They drained a couple liters at a time… and I would get some relief… but two days later the fluid would be back.  I looked like I was wearing a fake belly with triplets.  It was as hard as a rock.  The worst part was the pain and the worry and then the worry and then the pain.  All I had was hours and hours laying in that hospital bed wondering if Ellington would be breathing , swallowing, crying.  Why did this happen?…

 I was… a mess.   Thank God I have the world’s most supportive and loving husband.   This could’ve been something that pulled us apart, but instead – it made us even stronger.  Of course, there were inevitable bumps and bruises…and we definitely did lots of therapy after Ellington was born… to deal with our emotions.   We went to war for our child.  There wasn’t anything we wouldn’t do to help Ellington thrive.  The uncertainty was the worst…  Oh my God the unknown was so scary.

Cut to week 33!

It was Sunday April 15th… I’ll never forget… I actually got to take a shower that day… it had been two weeks since I had showered or put on any make-up.   I was prescribed medicine that kept me bed-ridden.   When they finally took me off it, I had a glimmer of hope.  Ron took me to the plaza level and pushed me around in a wheelchair in the fresh air.  I never felt happier.   Fresh air and sunshine.  It’s amazing how you take those things for granted until they’re taken away…even just for two weeks.    The baby shower for my first baby was scheduled on April 15, but due to my condition it had to be canceled.   But, that afternoon, my amazing family came to the hospital with cupcakes and gifts and we celebrated, all crammed into my little room.  There was lots of laughter and tears…   I actually got to put on mascara and eyeliner.  As vain as that sounds that little thing made me feel like I hadn’t totally lost “me.”   All I kept thinking was “I made it to 33 weeks please take this baby…  I can’t take this anymore.”   My body… filling up with fluid again and again.  The non-stop pain  – just beyond.   Ellington had received all the steroid shots.    Why couldn’t they just take him now?  

 After a beautiful day with my family the night came, and the contractions came, and the fluid built up again, and it was time to drain me again for the millionth time.  The needle in my stomach yet again.  Yellowy reddish fluid flowing through the tap again as I stare at the TV watching “Sex and the City” reruns.   This was my nightly routine.    My escape from reality.   And then…  the needle in my stomach… yet again.

I started to bleed internally…. and was nearly rushed to the ER for an emergency C-section…  But after five minutes the bleeding stopped. Everyone was relieved except for me.  Why couldn’t they just take him… that’s all I thought… why couldn’t they just take him.  My doctor assured me…each day Ellington stayed in my belly… it would increase his chances of being a healthy baby.  So I wiped my tears, I smiled and said OK. 

Took a sedative.   Kissed my husband.   Finally…..fell asleep.

An hour and a half later.   I am suddenly awakened.   My water breaks.

Now get the visual…. all that fluid inside me – kaboom.

Lol.

I was in labor… It was happening.

My doctor actually asked me:  “Can you hold off until first thing Monday morning… ?”    If I could only handle the contractions…they could do a C-section first thing 6 AM.  Since I was safe in the hospital there was no need to rush at 3 AM.   I said: of course.  I called my husband.  I swear he got to the hospital in like five minutes.  He held my hand while I didn’t sleep all night and waited until I was prepped for my C-section.  He told me the origins of the “Caesarean Section” – this is how Julius Caesar was born…

He knows a lot of strange and useless things.

It felt like the longest night of my life.  The sun came up.  I was taken into the OR.    I’m not going to go into all the gory details because that’s a whole ‘nother blog… but having a C-section is no joke and I’ve had four.

The good news was born at 9:01 AM – April 16th 2007.  I held my breath until I heard him cry and then…a huge sigh of relief.  He looked beautiful to me…but now… looking back he was actually very sick.  That’s the love of a mother – all I saw was a beautiful healthy baby boy,  but he was fighting for his life and would remain in the N.I.C.U for two more months.

Everyday I flashed my N.I.C.U. badge and walked into the high-security ward.   The anxiety added a few wrinkles, a few gray hairs for sure.   But then… there were the lifetime friendships I made….. other moms – with similar stories…. All of us – bonded for life – all of us hanging by a thread with our first borns – all boys…. But the story of the N.I.C.U. moms – I’ll save it for another time.

 

Xoxo Mommies Forever

Stef