March 7, 2001

So, throughout Evan's entire NICU stay, all we wanted was for him to be discharged so we could start out our life together as a family.  So, when I entered the NICU on Wednesday March 7th, 2001, I thought we'd have a couple more weeks there based on what we were told by the medical team 1-2 days prior to that.  When I left the NICU that night, I left with the news that our baby would be coming home less than 48 hours later.  Was I happy?  No.  I was leaving the pumping room and was met by two staff members.  Keep in mind this was about 4:30 p.m. They greeted me with the words that Evan was going home on Friday! I guess I was supposed to be excited but trust me, I was not.  We had just had our trach training the night before, we had NO medical equipment nor training on it and mentally, I just wasn't ready.  I was just starting to wrap my brain around the trach which had just been placed 10 days prior. We had been told we could stay overnight prior to his discharge and we weren't even going to have time to that.  The nursery wasn't totally ready for this baby who needed equipment that would turn his room into a hospital room.  I remember going out to the lobby and calling Mike, crying hysterically over this news. I was supposed to feel excited and ready for his homecoming, not sick to my stomach and unprepared. So, on Thursday, we waited for the durable medical equipment company to come bring us all of our supplies and equipment and receive what I felt like was the Cliff Notes version of how to use the feeding pump, air compressor, suction machine, oxygen and apnea monitor.  Thank God Mike was a little more calm than I was because when that guy left our house, I had no idea of what I was suppose to do with everything and more importantly, where were all the supplies even suppose to go??  Friday morning was spent at the phone store buying a cellphone for use in the car when he was with us, learning how to administer all his meds and getting instructions on his feeds.  Did we have any training on the g-tube and how to change it?  Uh, no, we did not.  We were sent home with the kit and that was it.  By 12:30 he was in the car, going home with us-his scared, somewhat sad and unprepared parents. What kind of homecoming was that?? 

Tears

15 years ago today, I cried until I couldn't cry anymore.  We said goodbye to our 6 week old yet again as they wheeled him back in the OR.  We prayed that his ENT would be able to do the surgical procedure she had hoped she could do but when she came back to the waiting room 20 minutes later we knew the news wasn't good. A tracheotomy was his only option so later that day we saw our baby with a tube in his neck.  At that time, at least to me, his future looked so bleak since we knew nothing about his future at that time.  Nothing.  The doctor couldn't tell us anything because she didn't know either. All they could tell us is that they would look at his airway again in 6 months.  

Today I cried tears of joy.  Today Evan showed his history project video to the judges during the school's history competition.  I was already proud of the work he had put into it but then while I stood back and watched him interact with the judges, I was blown away.  I spoke with his Humanities teachers and they told me how well received his video was by his class and how they could tell this project has made him so much more confident.  One of the peer judges came to me and told me how good it was.  Never in my wildest dreams could I imagine this back on February 26th, 2001.  

https://youtu.be/S148SwtbwOU

Getting rid of plans

I cut this out of Oprah's magazine shortly after Evan was born because it was so true at that time. It was hard to get rid of those plans, but the life that was waiting was more than I could have ever imagined. 

On January 17th, 2001, I knew nothing about esophageal atresia, laryngeal webs,trachs, GJ tubes, laryngotracheal reconstuction, slide tracheoplasty, reflux, voice clinic, bronchoscopies, endoscopies and the NICU.  As of 11:41 a.m. on January 18th, 2001, my world became nothing but all those things. Without all those things, Evan would not be here with us today.  Do I wish he had been born in March as planned as a healthy, typical baby? Absolutely not.  Because he would not be the young man that he is today. He is quiet, smart, funny, and he's confident in who he is, something that I struggled with all through high school and probably something I still struggle with today.  He's also very brave.  He's been through so much yet he takes it all in stride.  Would he be the same young man if he hadn't gone through all these hardships?  I don't think so.  Not only would he not be the same person he is today, I wouldn't be either.  As a result of all those medical things I listed above, I have met some extraordinary parents, people that I am proud to call friends. People that held me up and helped me through the hard times.  People that get it.  I've seen God perform miracles over and over again with my work in the NICU. How many people get to witness that day after day?  I'm so lucky.

15 years ago.......

15 years ago today, our journey into the world of prematurity, birth defects and the NICU was beginning, even though we didn't know it yet.  I had been on home bed rest since Dec. 27th and that morning Mike and I went to my ob/gyn's office for a stress test and to turn in my 24 hr protein test. Stress test was fine, BP was somewhat under control (this is why I was off work and at home) and they said they'd let me know about the test results.  They needed to check the protein in my urine as it's an indicator of the severity of pre-eclampsia.   

Once I was back home, my parents came and picked me up to take me to their house so I could get a change of scenery.  I couldn't drive and was going crazy at home.  I mean crazy.  I had watched every single episode of  "A Baby Story"  on TLC and of course while watching, thought Evan's birth would be just like on TV. Ha!!  I have to say, while it was boring to be at home, it was stressful.  I had to take my blood pressure 2-3 times a day as well as lay on my left side once a day and count Evan's movements.  I prayed every time I did it that I would feel him move.  We went to eat at Dutch Kitchen in Plain City before heading to their house in London-I can tell you exactly where we sat.  I hit the couch when I got to their house and took a little nap.   I woke up feeling really weird and off.  I took my blood pressure and it was 160/110, the highest it had ever been.  I was scared and immediately called Mike who then called my doctor.  Mike called me back right away with the news that I was to go to the OSU ER right away-Mike would meet us there.  I felt so bad that my parents had to drive back into Columbus!  It turns out I did elevated protein levels in my urine and my doctor had planned to call ME to tell me to go to the hospital.  Obviously my body was starting to let us all know that I needed to deliver the baby.

By the time we got to the ER, my BP was 180/120 which of course is dangerous and they immediately took me up to L & D.  Just like that, I was in a gown and they started an IV of magnesium sulfate, something I would be on for the next 5 days.  This is something that is used to help control seizures.  I'll never forget the resident telling me that I'll feel like I have a bad case of the flu.  To this day, I would LOVE to hook him up to this stuff and have him discover that it does NOT make you feel like you have the flu.  It makes you feel as though you are paralyzed and that you are on fire from the inside out.  And with the flu, you are able to drink and eat if you want to.  On this stuff, I could not.  Once I was in a room, they catheterized me and  I was in that bed for the next 96 hours.  To be honest with you, I don't remember much after that.  The next two days were a blur.  I couldn't watch TV, I couldn't read.  I was so miserable.  I do remember my mom making the decision to cancel my baby shower which was going to be on the 20th but I figured we'd just have it a couple weeks later.  I still didn't really understand that I was going to be delivering my baby prior to his due date in March.  It finally hit me when my doctor came in and said my BP wasn't coming down and they had to take the baby.  I remember that I started crying and all I could say was that it wasn't time to take the baby. It turned out that we weren't going to meet our baby in March after all.  We were going to meet him on January 18th.  The doctor kept assuring me that the baby would be fine because I had received steroids shots that would help his lungs and his weight was good.  Other than probably a few weeks in the hospital, the baby would be fine.  Little did we know.