Evan's first 6 months -Pregnancy and Birth

I wanted to re-visit Evan's first 6 months- to remind myself and put it into perspective just how much of a roller coaster we've been on since we found out about Evan's condition at 18 weeks of pregnancy.

I think it's important to remember these things, although it can be painful- but we've come a LOOONG way.  And because it's been a long journey, with lots of information to impart, I'm writing this in 7 parts.  So with no further ado, we'll start at the beginning of Evan's story: Pregnancy, diagnosis of the omphalocele, and birth. 


December 31, 2010 @ 11:49 PM- I found out I was pregnant shortly before midnight on New Year's Eve.  I had been acting different, feeling odd.  Carl and I had decided to try for a baby the summer of 2010- So I took the pregnancy test, and was so shocked and excited to FINALLY see a positive sign!  Carl was watching the New Year's Eve show on TV in the living room, and I walked out and told him.
His reply: "No way!"  I showed him the test, and said (so eloquently) "Ummm. Yep."
It was the best New Year's Eve ever.

January 28, 2011- I went to the doctor, who did an ultrasound, and confirmed our pregnancy. I was 8-9 weeks pregnant.  We did standard blood work to be sent off, and I settled into my first trimester. 

March 17th, 2011- We were referred to a maternal/ fetal medicine office because my doctor felt I needed additional monitoring because I have a duplicated uterus.  So we went to the appointment and had high hopes we might find out if the baby was a boy or girl.

The ultrasound tech spent quite a lot of time getting images, which I thought was a little odd, but Carl and I were in high spirits and joking and laughing- we got to see our little man moving around for the first time, and saw his little face.
After the ultrasound was finished, the tech left the room to present her findings to the doctor.  I got a little more anxious waiting for the doctor to come in.... it seemed to take forever.
Finally, Dr. Papa entered in the room, and sat down at the ultrasound machine next to me.  She introduced herself to us, and warmed up to tell us the bad news.  I remember her being incredibly warm and caring- she said "Your baby appears to have a very rare birth defect- This affects the abdominal wall, and we're not sure if it is an omphalocele or gastroschisis... But the long and short of it is that some of the baby's organs are outside the abdominal wall."
She explained the difference of the two diagnoses, and recommended an amniocentisis to be done.  So we did and anxiously awaited the results. 





April 7, 2011- We found out the results of the amniocentisis, and all the results were normal, AND we found out Evan was a boy.  :-)  We were so happy to find out both.


May 14, 2011-

I found an online support group in the form of MOO's (Mothers of Omphaloceles)  I was so very encouraged by all their stories of babies going home soon after birth, and frightened by the stories of hardship and loss.   But I learned so very much about Evan's condition as he grew inside.  He was an active little fella, and I loved all his movement.  He started showing personality even then, which was a highlight of what was to come.















June 12,2011- Evan was going to be due on September 1st, but I started having the feeling I might not make it all the way to my due date by this point- he was growing, and we were getting very frequent ultrasounds at this point.  But he seemed to be happy and content to sit and wait until his time came....

July 23, 2011- I was feeling very large, unwieldy, and completely PREGNANT.  I was tired all the time, couldn't sleep more than 3 hours at a time without getting up to pee, and fell asleep on my recliner at the drop of a hat.

July 30, 2011- We had Evan's baby shower- I was irritable, worried about being 2 hours away from the hospital of our choice, and on the way home, I had a mini panic attack because I just had this feeling that I NEEDED TO BE HOME..  I got home, we unloaded the presents, and had dinner.  I remember I was exhausted, and ready for bed. 



July 31,2011 @ 9 AM- I slept in for once, although I vaguely remember getting up to pee.  My back kinda ached, but I had driven 4 hours total the day before, so I wasn't really worried.  But as time went by, it just got worse.  By 10:30, I had a suspicion I was in labor and began timing the pain, because it came in waves.  Over the next hour, I timed the pain to come every 4-5 minutes, and it was getting more painful.  I called my doctor's office, left a message, and the on-call doctor called me back and told me to go to the hospital- he would meet me there.


11:45- Carl and I arrive at the hospital.  He dropped me off at the emergency room entrance while he parked the car, and I waved away the offer of a wheelchair by the attendant there.  I waddled in, and the lady at the front desk asked, "You coming in for yourself?"  I smiled and said "Yep!"  She told me to come on back and get in the wheelchair, and they;ll have someone take me up to be monitored.  I sat there for about 5 minutes, then a young man wheeled me to the elevators.  As we were going up, I felt a hard contraction, and my water broke.  I said to the young man "Ooops!  Oh, crap, my water just broke."  He said "REALLY?"  I replied "Oh yeah."  as I texted the same information to Carl.  So we got off the elevator at our destination, and the young man told the nurses "Her water just broke in the elevator- we left a trail."
They rushed me downstairs to a delivery room, and asked me to get a gown on, while I was on the phone with Carl, trying to tell him where I was.  The contractions were coming hard and fast, and I couldn't get the presence of mind to tell them that Evan would be born with an omphalocele.  Luckily, Carl found us quick, and told the nurses about it all.  They checked me, and I was dilated to 6 cm.  We waited a short while, for the doctor to come.  They called the pediatric surgeon, and got everyone situated.  They prepped me for a c-section, because my doctor had previously determined it would be too complicated and too risky to chance a "natural" birth.


About 12:45 PM- They wheeled me into the operating room.  They informed all present about the situation, that we were performing a c-section, that I had a duplicated uterus, and that Evan has an omphalocele.  There must have been at least 15 people there, between the on-call doctor, the assistant, anesthesiologist, neonatologist, and the nurses.  They gave me the spinal, tested to make sure it was working well, and Carl came in once the paper barrier was put up between us and my belly.
They began the c-section, and Evan was born at 1:36 PM.


I sat there on the operating table, just hearing Carl's quiet "oh wow......wow".  No cry was heard.  I was on alert, and heard one doctor say "we've got some fluid, here."  I heard people moving, and the anesthesiologist leaned over and said, "It's okay, they're passing him onto the neonatologist." 

They began working on me again, and I was just straining to hear anything.  Anything at all.  Carl was peeking around the paper barrier.  He later told me that he couldn't even see what they were doing with Evan because of all the people working on him.
I still waited to hear any cry from Evan.
Finally, after what felt like forever, the neonatologist approached us, staring down at me- he said "We've got him stable- his omphalocele was ruptured.  He also wasn't breathing on his own, we had to intubate him.  We'll take him to the NICU to prepare him to see the surgeon.  We might be going to surgery."
I was already numb from the spinal, but I felt and cold, cold feeling come over me when he said the omphalocele was ruptured.  I knew what that meant.  I knew that because he was a month early, his lungs might not be as strong, and that with the rupture, we would have to worry about infection, twisted bowel.... any number of problems.  I remember closing my eyes tight at the doctor's words.
They wheeled Evan by in the incubator, and stopped for a few seconds so I could see him.
And the cold feeling went away.  I was still horrified to see my sweet baby boy, the way he was.  I already loved that little guy, but the love grew to encompass my entire being the moment I saw him.  I couldn't look away.  I wanted to touch him, but couldn't move my hand more than an inch.

They wheeled him away, to the NICU.  And finished working on me.  I was moved to a gurney, transported back to my room, and the next few hours are pretty much blank.  I literally, at this moment cannot really remember what happened.  I know the surgeon got ready for surgery, and they placed Evan's silo to hold his organs, because his liver, small and large intestines were exposed.
Before they took him to Cook Children's across the street for the surgery, they wheeled me out of the room to see him again, briefly.  Carl went with Evan to wait for the surgery to be done, and took pictures for me while my parents kept me company.

That's the end of this installment of Evan's story.  I will continue tomorrow, with Part 2- Month One.