Hope Beyond the Walls of the NICU

In 1994, my husband Dave and I married.  I was 22 and he was 21.  We

had hopes and dreams just as any young couple does.  We had planned on waiting 3 years before starting our family, but God had other plans for us.  In February of 1995, we discovered we were going to be having our first child.  We were both shocked and thrilled.  My pregnancy was normal and we looked forward to the day we’d meet our child.  In August, we discovered we were having a little boy and couldn’t have been happier.  My due date was October 25^th, 1995 and on September 25^th, 1995 I went in for my routine 8-month check up.  At that appointment, I mentioned to my doctor the discharge I had been experiencing for the last week or so.  She decided to do an internal exam and found my amniotic sack to be bulging, the baby’s head engaged and I was dilated anywhere from 3.5 to 5 cm with my cervix about 70-80% effaced.  She couldn’t be certain on the dilation because the sac was in the way.  She then felt my stomach and told me she felt I was having contractions.  I had no idea since I couldn’t feel a thing, so she put my hands on my stomach and showed me what to watch for. For the rest of the day, I carefully watched myself and counted contractions.  By that night, Dave and I were counting them together.  When they became 10 minutes apart I called the hospital and told L+D just as I had been instructed to do.  They told me to take a warm bath, relax and call them back in 45 minutes.  Forty-five minutes passed and my contractions had jumped from 10 minutes apart to 4 minutes apart.  We were finally told to come in.  When we got there I was admitted, and they called my doctor. 

I had been under the impression that since I was 36 weeks, I’d be allowed to labor and have my baby.  My doctor told L+D that she hoped I wouldn’t go into labor for another week, so she told them to try and delay my labor.  Because I was already effaced to 80% and dilated close to 5 centimeters, all they did was flood my body with fluids intravenously. They told me if they stopped my labor, I’d be there for up to a week depending on how long they could hold me off.  That wasn’t meant to be.  They were able to slow my labor down, but not stop it all together.  Finally, in the morning I was able to labor.  I still didn’t feel the contractions and they later broke my water….OUCH!  I could feel them now! 5 hours later, at 7:20 pm on September 26^th, 1995, Kyler Mark was born weighing 6 pounds 5 ounces and 19 inches long. We had planned on Dave cutting his umbilical cord, but Kyler was born blue and needed assistance.  Suddenly, there was a swarm of people around him and my husband, Aunt and I stood and watched as our firstborn son struggled to breathe.  His first apgar was a 2 and his second was an 8.  Whew!  I was crying and the doctor kept saying, “He’s getting pinker!”.  After a minute (it sure seemed like forever), our baby was safe in our arms.  Other than a few minor things like bilirubin levels and some mild feeding problems, Kyler did great!  He did need phototherapy for 2 days, but that was pretty much it.  He is now a healthy 4, almost 5-year-old, child.

After Kyler was born, I was sure I didn’t want any more children.  I was terrified about what might happen if we tried again and it took me a while before I wanted another baby.  In November of 1997, Dave and I decided to try for another baby.  Christmas Eve 1997, I came down with the most horrible flu I had ever experienced.  Because I was so worried about being pregnant and so sick, I had Dave go buy a pregnancy test Christmas morning.  Sure enough, it came out positive!!  We were thrilled! 

In late January, I went in for my intake appointment and in February, I went in for my first OB appointment.  I voiced ALL of my concerns and worries about having a baby earlier than my son was born.  My twin nephews had been born 11 months prior at 33.5 weeks.  Both babies were vented for a short time and we saw them in the NICU.  That terrified me beyond words!  I asked about my chances of delivering a baby earlier than 36 weeks and was told I was at a “slightly” higher risk than someone who had never delivered a baby early.

My pregnancy progressed and I was working part-time at a pizza place.  I was on my feet a lot while at work and worked about 15-20 hours a week.  At 16 weeks, I was taking a nap before work and woke up to this weird tightening.  It wasn’t painful, just consistent and tight.  I thought it was a bit early for Braxton-Hicks so I stood up and decided I’d change positions.  I had read and been told that Braxton-Hicks contractions stop when your position changes.  I decided to take a shower.  All the while my stomach was STILL contracting.  Scared, I stayed home from work.  I called my OB’s office and was told that it wasn’t unusual for women in their second pregnancies to have Braxton-Hicks contractions but that I had had too many.  If they progressed, I was to call.  As far as I knew, I never had them again.  Right around the same time, we were shopping and I suddenly felt this intense pressure in my cervix.  It was enough to stop me dead in my tracks.  I thought to myself, “That’s weird.”  I had an OB appointment not long after that and I asked about that pressure in addition to the contractions I thought I had.  Both were dismissed as no big deal.  After that, other than urinary tract infections, my pregnancy continued normally.  That is until I had my ultrasound at 22 weeks.  There, we discovered we were having TWINS!  A baby boy and a baby girl!  I then decided to ask the nurse if this made me high risk.  I was told “Not necessarily.”

The babies looked healthy, other than the fact that my little girl was about a week behind in size, so they sent me to a Perinatologist for a Level 2 ultrasound.  I decided while I was there, I would ask the Perinatologist what they thought about my working and if I was at higher risk now that we knew I was having twins.  The Perinatologist wouldn’t comment and directed me back to my own doctor.  I was there for one purpose and that was to measure my babies.  My babies were measuring about 18% in size difference, which I was told was not worrisome until the difference started nearing 20-25%.  I was to have monthly scans to monitor the babies’ sizes.  My next scheduled appointment was May 27^th, 1998. 

May 21^st, 1998, I was at work.  I was feeling some kind of strange pains all night long so I asked to leave early.  At my husband’s request, I called L+D.  Because I was having twins and was at an increased risk for pre-term labor, they had me come in.  I got off the phone and was in tears!  I was 25 weeks.  They hooked me up to fetal monitors as well as monitors to record any contractions I might be having.  They had me drink tons of water and did a urine culture.  Since the urine culture came back saying I had a urinary tract infection and I wasn’t having contractions, they decided not to check my cervix.  After 2-3 hours of monitoring, I was sent home with instructions to return if I felt contractions that didn’t go away without changing position or were painful.

The next day I took it easy and had my grandparents help me with my 2-year old son.  I basically rested all day and Saturday, May 23^rd, 1998, I was back home with my son.  My husband was working extra hours and I was still trying to take it easy.  Kyler did something that 2-year olds do and I stood up way too fast.  I felt a sharp pain followed by a contraction.  I laid down and waited for more.  Since after I changed positions they stopped, I thought nothing of it.  Noon came and I put Kyler down for a nap.  I went to the bathroom, looked in the mirror and thought the babies had dropped, but I brushed it off and thought they must have changed positions.  I went to the bathroom, had a bowel movement, stood up and one of the babies’ sacks fell through my cervix.  I called my grandparents and told them to come right away and I called 911.  I was terrified and knew something was terribly wrong.  I couldn’t tell if I was having contractions or not, but I felt like I was.  I couldn’t feel the babies moving which scared me.  When the medics arrived, they put me on a gurney and off we went.  My grandparents had Kyler and called Dave, and my sister-in-law came with me in the ambulance to the hospital, where we arrived at around 1:30. 

The events that followed are all a blur.  I remember the nurses and doctors asking me if I felt contractions.  I wasn’t sure, but thought I was.  I was more concerned about whether my babies had heartbeats, and they did.  One was in the 120’s and the other was in the 140’s.  Whew.  Since my sac was protruding about 6 inches, we decided to have an emergency crash c-section.  I was completely under, never saw my husband but was told he was there. I awoke in recovery and was told both babies were alive and in the NICU.

If you have never been in a NICU, it is a very terrifying site.  When they wheeled me in to see my babies, I had only been out of surgery a little while.  I saw these very immature and tiny babies hooked up to machines and struggling to survive.  I actually couldn’t see much of them -- there were tubes and wires everywhere!  I ended up asking Dave for some Polaroids of the babies so I could get a closer look at them.

The next morning I went down to see them and they looked so helpless. I had terms thrown at me that I didn’t think I‘d never hear.  Dave and I quickly learned to read and ask questions.  We had a crash course in Neonatology.  I was released when the babies were 3 days old, which was also the day we received some of the most devastating news we’d ever receive.  I knew something was seriously wrong when the Neonatologist took us aside in a room and closed the door.  I started to cry.  He said he had good and bad news.  The good news was that even though Janae had had a bleed, it was on one side and was a Grade 2 on a scale of 1-4.  He said if it resolved, there would probably be little if any permanent damage.  Isak, however, had a Grade 2-3 on one side and a grade 4+ on the other side.  He said if there were a grade 5, Isak’s one bleed would be it.  Blood was spilling out of his ventricles and causing swelling and spinal fluid was beginning to build up. 

We were told there would be massive damage among many other things I can't even remember.  We were told he should have

died when the bleed happened because he lost over half of the blood in his head.  Then we were asked if we wanted to terminate life support or order a DNR (Do Not Resuscitate). Our immediate answer was, “NO!”  We felt Isak was fighting and wanted to live and were, by no means, ready to take an action such as that.  We scheduled a meeting with another doctor to discuss the long-term effects of Isak’s injury.  There were a lot of things thrown at us.  Still, we felt we made the right choice.  At 3 weeks of age, Isak had a shunt placed.  He had developed Hydrocephalus because of the bleeds and this helped drain some of his excess fluid.  This was the first of many surgeries for Isak.  

He also had seizures because of his bleeds and underwent a double

hernia surgery.  The seizures were controlled pretty well by Phenobarbital for most of his life, other than a few separate occasions.  He also developed severe Retinopathy of Prematurity and underwent laser eye surgery, which saved his vision.  When he was 6 weeks, he came off the vent.  He was off and on O2, but only went back on the vent for surgeries.  He finally came home after 148 days on only iron and Phenobarbital for his seizures.  He had a rough course and his troubles didn’t stop after the NICU.  He had many problems.   

We eventually lost Isak when he was 10 months and 5 days old. That was 15 months ago.  Still, I feel to this day, that we made the right choice.  My son had a hard life but was also VERY loved.  He had a lot of good days too.  He was the sweetest baby I have known and only complained when he needed something.  To us, he was simply amazing.  He taught us the value of life and now, through his twin sister Janae, he lives on.  Isak fought hard to be here, but he also knew when it was time to move on and go home to his Heavenly Father.  We feel blessed to have had him in our lives.  Isak touched many people in his short time on earth. 

Janae also had her fair share of troubles.  Janae weighed a whopping 1

pound 7 ounces and was 12 inches in length at birth.  She struggled to breathe even on a regular vent so they put her on a vent called an oscillator, which allowed for quick, constant breaths.  She also had PDA (patent ductus arteriosis), which affects a valve in the heart that generally closes after birth.  In preemies, this valve often needs help doing so and, when medication doesn’t work, surgery is the next option.  When Janae was nearly a month old and weighed 1 pound 11 ounces, she had heart surgery to close the valve.  It was very successful and after that procedure, she sailed through her NICU stay.  Janae’s grade 2 IVH began to resolve and, even though she too had ROP, it was very mild.  She came off her vent much to our surprise at 6 weeks (just like Isak) and by August, both babies were in the Intermediate Nursery.  On August 24^th, 1998 at 91 days old, weighing 5 pounds 11 ounces and measuring 18 inches long, Janae Kristine was discharged.  She was healthy and needed only an iron supplement.  Today, Janae is 2 years old, weighs a healthy 20 pounds 1 ounce and stands 32 inches tall.  To look at her, no one would know of her early struggles.  She has I.V. scars that are fading, and a PDA scar on her back that will remain forever.  She is small, but is developmentally like any other 2-year-old.  She runs, screams and plays.  She is a miracle, and I believe that Isak is with her always.  I am also pleased to announce that she will become a big sister in January of 2001 (providing this baby stays put that long!).  

For those of you who have been there, my heart goes out to you. To those of you who are now enduring this trial, hang in there…it can get better and there is hope beyond the walls of the NICU.