On Wednesday Sept. 4th, when Ian was 11 days old, a nurse noticed that he seemed
uncomfortable and his tummy was swollen, so they called the doctor. He
instructed the nurse to slow the feeds down, and I stayed most of the day with
Ian because he seemed so upset. It was really hard to leave him that evening
because I was sure he wasn’t feeling well.
Thursday was
Matthew’s first day back at work since the birth of our twins. Thankfully his
boss was very flexible and Matthew was told he could take as much time off as
he needed, which took away the stress of worrying about work through all this.
Since everything seemed to be going well Matthew figured he might as well go
back to work now, he had had 2 weeks off already, never mind the week he took
off for the emergency trip to Toronto earlier in the year.
When I got to
the hospital Thursday morning, the nurse filled me in on what had happened
while I was away. Ian’s stomach had been pumped and there had been about 3
feeds worth of milk in there. No wonder he was so sore! The doctor had taken
Ian off feeds and they were about to do an x-ray as I walked in the door. After
the x-ray the doctor put Ian back on feeds since he hadn’t seen much on the
x-ray. Ian cried almost right away after they started the feed pump, so the
nurse stopped it and called the doctor again. The doctor that came to check Ian
again had just arrived for the day, because they had just done a shift change.
She did another x-ray. At that point I stepped out of the NICU to meet our
minister and his wife who had arrived to see the twins. By the time I got back
in the NICU with the visitors, the doctor informed me they would be
transferring Ian to the Stollery Children’s Hospital immediately so he could be
watched closer and possibly have a surgery.
My little 2lb baby may have a surgery?! Do they survive surgery when
they are that small? After a short visit, we (the minister, his wife and
myself) stepped out of the NICU, sat down on some chairs nearby, read the Bible
and prayed. (I read later in the first operative report that Ian needed to be
resuscitated just before going to the Stollery. I assume this was just before I
came back into the room after visiting with the minister.) After the minister
and his wife left, I went back into the NICU. The transport team was there
moving Ian into the little ‘stork 2’ incubator crib used to transfer babies.
Once Ian was settled and all the tubes and pumps were placed properly, they
wheeled him out and away to the ambulance that would bring him to the Stollery.
I stayed
behind to snuggle Ryan for a while. Ryan’s monitors had been beeping often
while Ian was in pain. I think Ryan knew something was wrong with his twin.
Unfortunately, during all the busyness of trying to get Ian out of this NICU
and off to the Stollery NICU, Ryan was due for a feed, so a nurse had started
his feed pump… because it was so busy she had not double checked the milk’s ID
tag with another nurse and had accidentally started pumping into Ryan a syringe
of breast milk that wasn’t mine. Another nurse noticed it, called over the
nurse who had started Ryan’s feed, she stopped it immediately and called the
doctor. While I was with Ian I had noticed a little commotion around Ryan and
after Ian left I went over to hold Ryan. The doctor that was on, and the nurse
that had made the mistake, came and told me what had happened and apologized–
the poor nurse was so sorry she was crying. I hugged her. I was much less
worried and was just hoping that there was some super antibodies in that
mother’s milk that I may have been missing! I also hoped the poor mother whose
syringe of milk they had to throw out wasn’t having a hard time pumping enough
milk. The hospital had both mothers do a blood test just to be sure neither of us were
carrying anything that could harm Ryan. After all this I texted Matthew and
headed down to the Stollery.
Ian looked a
little better since he had been off feeds for a bit, and was on some pain meds
so he would settle. Ian weighed in at 2lbs 6oz, he couldn’t afford to lose any
more weight. The nurse told us that Ian’s tummy was still tender and distended,
and would need surgery soon. The surgeon came in to talk to us. Dr. Dicken, the
surgeon, explained that from the X-Ray’s on
Ian’s intestines it looked like he had something that many preemie babies get and
die from – Necrotizing Enterocolitis (NEC). (NEC is a scary word in the NICU.
The doctor at the Misericordia had started Ian on antibiotics in case he had a
bacteria causing NEC.) Dr. Dicken could see from the X-Ray that a part of Ian’s
bowel was dead, but he couldn’t see how much of it was dead, we would know more
after the surgery.
The next day was
Friday. The twins were 2 weeks old! Matthew and I arrived at the Stollery early
that morning. We met with Dr. Dicken
and then walked Ian down to the OR. Then we walked back upstairs and
waited in the family room. Dr. Dicken came to talk to us after the surgery. He
explained that he had taken Ian’s intestines out (Ian was so small he had to
take them out to look at them). He looked them over, they were grey and dying,
and looked ischemic (an inadequate supply of blood) He also de-rotated an
incomplete rotation (A twist in the intestines) and removed the dead part of
Ian’s bowels that had multiple perforations and ischemia, in total, about 7 cm
of intestine, so not too much. Intestines should be pink, or at least turn
pinker after taking out the perforated portion and after the de-rotation. In
Ian’s case they didn’t look any better when he was done, so as a last resort he
had closed Ian back up temporarily. Dr. Dicken said the pattern of blood
vessels going to the intestines was strange, not what you would normally see,
as if they had died off, and then quickly grown back, possibly from a lack of
oxygen at some point. He said he would take a look again on Sunday, if things
looked better he would do an ileostomy (the surgeon makes a small surgical cut
in the wall of the belly, part of the small intestine is brought up through the
cut (a stoma). The intestinal waste, then deposits into a bag that the patient
adheres to the skin over the exposed intestine (stoma) and needs to change
regularly.) I asked how likely it was that Ian’s intestines would look better
by Sunday, he said it wasn’t likely, Ian’s intestines looked pretty bad. He had
seen something similar to this before in a TTTS donor. I asked what he would do
if Ian’s intestines didn’t look better when they opened Ian up again on Sunday.
Dr. Dicken said nothing could be done, they would just close him up again and
transition Ian to palliative care. I asked “So he would die?” Dr. Dicken
nodded. Our Ian would likely not make it. The poor guy had fought so hard in
utero only to be born and fighting again. “Hope for the best, but prepare for
the worst” is what Dr. Dicken said before he left. We were devastated.
Right after
the doctor left a nurse informed us that there was someone there to see us, it
was one of my friends, Rachel. Matthew and I were crying by the time she walked
in and we didn’t say much, just introduced Ian and continued to cry, Rachel
hugged us and left. Although it was a short visit, we were so grateful she
stopped by, she was pretty much the only person I would have wanted to see
right then. Rachel was going through an extremely rough time with her baby
Maverick in the stollery with CHD (Coronary Heart Disease). Her baby wasn’t
expected to survive SO many times! She understood that this place was no easy
place to be, she knew what it felt like to be told your baby wasn’t going to
make it. After a bit we left the
Stollery and went to go see Ryan at the Misericordia Hospital. He was still
doing great, on full feeds and drinking most of it from a bottle! It felt odd
to be so devastated about Ian and yet excited about Ryan at the same time.
Saturday was spent crying and praying. I visited both hospitals in the morning and when
I got home my Mom was there. She had flown out from Manitoba to be with us, and
my Mother-in-law had picked her up from the airport and dropped her off at our
house. Later that day we headed to the church to hopefully catch the tail end
of the church picnic. We were too late, they were just about done packing
things up. We chatted with the last few people that were there. Later we
dropped Nicole and the kids off at home and headed to the Stollery with my Mom
so she could meet Ian. Mom took some pictures of us with Ian since it was
possibly the last time we would have this opportunity. After visiting with Ian
we went to visit Ryan at the other hospital and he had a little surprise for
us, he didn’t need a feeding tube anymore! All his feeds were with a bottle. So
exciting! So close to coming home. The nurses were taking great care of Ryan.
Since we weren’t there to snuggle him as much, they were snuggling him a little
extra while we were gone. We were so thankful for such caring and understanding
nurses.
Pictures my Mom took of
us with Ian before his 2nd surgery.
Sunday
morning we drove to the hospital early so we would be there before Ian went
into surgery. We walked with the nurses again to the OR and left our baby with
the medical team waiting to operate on our little 2lb miracle. We waited in the
NICU family room for what seemed like forever. Dr. Dicken practically jumped
into the room and told us the good news! Ian’s intestines looked pink and
healthy! He had taken a little more off of his intestines, created an ileostomy
and closed him up. We were so excited, relieved, thankful! We thanked and
hugged the surgeon, then we went to go see Ian. After seeing him for a short
time we headed home for lunch and had just enough time to get to church for the
second service. My hair was gross and pushed into a ponytail, I couldn’t
remember when I had last taken a shower, I hadn’t put on any makeup that
morning since I knew that if I was either happy or sad I would be crying, and
it would all mess up anyway. My face was puffy from crying and I’m sure I stank
of sour milk from pumping ‘religiously’ every 3-4 hours for 30-40 minutes since
the twins were born 2 weeks before. But I didn’t care, I was SO excited and
thankful Ian was doing so well, I didn’t care if I looked and smelt gross!
After church we went home for supper, met some visitors at the hospital who
wanted to visit Ian, and then after visiting Ian I went to go visit Ryan for
the first time that day. I snuggled and
kissed him double, then fed him, he was doing so well!
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