A note from Mom:
"I had two beautiful baby boys
at 24 weeks, 1 day. Chase weighed 1 lb. 10 oz. and Evan weighed 1 lb. 7 oz.
They were born on April 23, 2013. They were transferred to Cardinal Glennon's
NICU. It started out as a rough battle and unfortunately; we lost our Chase
baby on May 23 due to surgical complications. Evan fought and fought and proved
to be extremely exceptional. He was discharged from the NICU when he was 36
weeks and 2 days. He spent 84 days there. He came home on oxygen. Three weeks
after he came home, he had to go back to the hospital to have surgery on his
eyes for his stage 3 ROP. Fortunately, that surgery seems to have worked and
the day after the surgery, he came off the oxygen. He's amazing and beautiful
and the only reason we were able to go on after losing our son. We owe him
everything.
I went to the emergency room when I was 23
weeks, 5 days. I was experiencing some mild squeezes on my bladder - it felt
like I had to pee. I honestly believed it was braxton hicks and I was
overreacting. So when the doctor finally examined me 2 hours later and I hear
him say, "she's fully dilated," my world, my life, my heart, my
everything changed right then and there. I believed I was going to lose my two
baby boys that night. Fortunately, they were able to stop the contractions and
transfer me to a hospital that specialized in premature birth. I spent four
days in Trendelenburg with my feet above my head and a clamped foley,
desperately trying to keep my water from breaking and the babies from coming. I
was having contractions the evening of April 23. They kept coming - even though
they weren't all picking up on the monitor. They brought in the ultrasound and
said everything looked the same. Still, they wouldn't go away, despite the
extra medicine (mag) I was on. Finally, around 9pm, they brought in the
ultrasound again and discovered that the baby's sack that was in my cervix now
contained a part of the baby's umbilical cord - which meant emergency
c-section. Both of my boys were born at 10:22 PM on April 23. They were
stabilized and transferred to Cardinal Glennon.
Despite the fact that they are twins, their
NICU stories were quite different. Chase started off as the talk of the NICU
because he was a 1 lb., 7 oz. 24 weeker that wasn’t intubated, just CPAP. He
was doing amazingly well. Evan, however, had a much rougher start. He dipped to
1 lb. 1 oz. and as I woke up on my last day in the hospital, we got a call
from the doctors saying he self-extubated and had a pulmonary hemorrhage and
they were significantly concerned that he wasn’t going to make it. We rushed to
get me discharged from the hospital so we could go be with him. We cried and
cried. When we got to the hospital, he was on the oscillator – a very scary
sight for a mother who had only really seen her sons once before. Pastoral
services stopped by and we asked about baptism for the boys. They said they
would get it set up and we had them baptized later that day. After everything
they did for Ev, he remained stable.
A few days later, Chase could no longer
sustain breathing without a tube, so he was intubated. He had the equipment to
breath well but his brain wasn’t developed enough not to experience severe
apneic episodes.
PDAs were a big topic of conversation in the
early weeks. Both boys had PDAs so they decided to start a round of ibuprofen to
try to close them. Evan’s went from moderate to small and Chase’s went from
large to moderate. We were hoping to avoid surgery for Chase by going through
another round, but we were unable to close his PDA. The doctors believed that
he would benefit significantly from having his PDA ligated, so he underwent the
surgery in early May. He handled it like a champ.
Meanwhile, they had started Ev on steroids to
help him get off the ventilation. After his first round of dex, he was
extubated and did very well. Chase was extubated after recovering from surgery,
but it was relatively short lived because of his inconsistency in breathing.
Then, on Tuesday, May 21, we got a call saying
Chase had an infection, but the doctor said his prognosis to recover was pretty
good. The next day, though, the doctor called in the surgery team because
x-rays showed air in his bowels. Surgery was in and out that day. Finally,
after another x-ray at 6pm, they came in and said they were going to do
exploratory surgery on Chase to see if they could find the problem.
Needless to say, we were devastated. Surgery
on a two pound baby is scary enough. We were worried that is bowel would be
necrotic, that he wouldn’t make it through the surgery, that they would find
something debilitating. There are a million things to fear.
Chase went into surgery around 6:30. Around
8:00, we got a call saying that they found a small perforation, they removed
one inch of bowel and that none was necrotic. They left a portion of his bowel
outside of his body (stoma) and would go back in a couple months to reconnect
it. Honestly, it felt like the best possible news. They found the problem, it
was small, he made it through the surgery and everything would be OK. It would
be a tough road with the colostomy bag, but we would make it.
We got back to the room and he looked so much
better. His tummy was flatter…it had swollen pretty badly before the surgery.
His color was great. They showed us the stoma and told us it looked wonderful.
We hugged and were relieved. Then everything went wrong.
His tummy started to swell. His stoma looked
bad. Something was wrong. And he started to go downhill fast. They called a
code and he was being worked on by doctors and nurses. We were hysterical so
they told us we should leave and go somewhere else and not watch what was
happening. We went to the chapel and cried. They finally came to get us and
brought us back. He was on the oscillator. The surgeon said that they didn’t
see anything going on inside him from the x-ray and if they opened him up
again, he would die on the table. They asked us to leave while they continued
working on him. They got us a room that is usually reserved for parents that
live far away. We went there to try to get some sleep. At about 3:30 am, we got
a call telling us to come up to the room.
The doctor told us there was nothing they
could do and that he wasn’t going to make it. They told us to take all the time
we needed. We held him and kissed him. We had our parents come in and hold him.
Finally, we were ready to say good bye. Actually, no. We weren’t ready. We
decided it was time for him to go to heaven so he wouldn’t be in any more pain.
They unplugged him and I held him while my husband sat next to me. And we
talked to him until he left us to be with Jesus.
We left not knowing when we would be able to
come back to the hospital to be with Evan because it was just too hard. We went
home and slept and cried and slept and cried. At around 5 pm, my husband
mentioned going to the hospital to be with Ev. I had been thinking about it
too, so we decided to go back. We lost our other son, so the weight of our
worlds rested on the little two-pounder’s shoulders.
The next few days were so difficult. The only
time we were able to find some peace was when we were at the hospital with
Evan. He was light in the darkness. Still extubated, Evan started to go
downhill really fast. We got a call the morning of the funeral that he had to
be intubated again because he kept having really bad episodes. I truly believe
he knew that something was wrong and was reacting to losing his brother. Even
though they hadn’t been side by side in a month, he still knew.
When we arrived at the hospital Tuesday after
the funeral, I was convinced that he was going to die. He was having really bad
episodes with his breathing and heart rate. I didn’t think he would make it.
Then, Wednesday, our new doctor came in and spent time with Evan. He told us
that it was the ventilator that was causing this, not Ev’s insufficiencies. He
spent time looking at Ev, the machine, the monitors – at least 45 minutes.
Then, miraculously, everything changed. From the moment he did that, within 1 ½
hours, Evan was on the right track and he never looked back.
He was extubated 1 ½ days later. He went
straight to the bubble CPAP and was doing wonderfully. He spent a month on the
bubble getting weaned every five or so days.
At 32 weeks, 6 days, he took his first bottle
ever! Four mls for my rockstar! Then, on his third bottle attempt ever, he took
all 47 ml!!! He was making such great progress; the doctor said he predicted he
would go home well before his due date.
The suck, swallow, breathe thing was still
quite a task for him, but he kept plugging away. Still lingering was his
bilateral hernia that he would have to have surgery to repair. Surgery and our
family didn’t have the best track record, so it was pretty scary.
When he was moved to nasal cannula, they
started discussing the surgery. He went in on July 6. He came out hernia free.
The extubation experience wasn’t great, but he made it through and back on a
smidge of oxygen.
Everything went really quickly after that.
They got him off the heat and into a crib, removed his NG tube and gave him all
his bottles by mouth. And then, they decided that he would go home on July 17,
exactly four weeks from the day the doctor said it would be four weeks. He is
exceptional.
Ev graduated the NICU when he was 36 weeks, 2
days adjusted and 12 weeks old from his birthday. Evan left as the talk of the
NICU because of this exceptional feat for a 24 weeker.
After coming home, we did find out that he had
a bad enough case of retinopathy of prematurity to require laser surgery. So we
were back to Cardinal Glennon two weeks after he was released for an overnight
stay. He made it through the surgery wonderfully and the day after, we decided
to try him without oxygen. He’s been off ever since.
He’s 8 lbs. as of August 20th.
