Being a Type 1 diabetic, my mother was no stranger to high
risk pregnancies. My older sister was born 7 weeks premature after my mother
exhibited signs of blood poisoning (preeclampsia/toxemia). She spent 3 weeks in
the Newborn Intensive Care Unit (NICU). My brother, on the other hand, was born
more or less on time, without any complications. Although the hope was that my
birth would be more similar to my brother’s, it didn't come as a total surprise
when the doctor informed my mother at one of her weekly checkups, that she
needed to deliver that afternoon, even though I would still be 5 weeks early.
He was confident that I’d developed enough to be born without any significant
lung problems. So, on September 11, 1990, I was born via C-Section at 2:03 pm
at McKay-Dee Hospital in Ogden, Utah.
Rather than try to explain my birth experience (of which I
don’t remember a thing), I've decided to provide a day-by-day account as
recorded by my father. This will hopefully provide a better understanding of
the ups and downs of the first weeks of my life. This is where my story really
begins.
September 11 – The C-Section went flawlessly and a precious 6
lb. 12 oz., 19 inch girl was born at 2:03 pm. As usual, she was whisked away by
the nurses to be cleaned up and checked out by a pediatrician. The pediatrician
was on hand because she was early. He determined quickly that her lungs were
not as developed as hoped and administered some surfactant to allow the lungs
to work better until they fully developed over time. I noticed an unusual
amount of activity around her and was concerned about all the commotion and
rushing around. It wasn't long before the pediatrician informed me that she had
a serious heart murmur that had him concerned. He had an ultrasound performed
on her heart and found that her atrium was not looking the way that it should.
He told me that Life Flight had been called to fly her to Primary Children’s
Medical Center (PCMC) in Salt Lake. He told me that McKay-Dee Hospital didn't
really have the capability to handle this type of condition. I could tell that
he was very concerned. He made it clear to me that this was very serious and
suggested that before Life Flight arrived, I should consider giving her a name
and a blessing (a common LDS ceremony performed on infants by one or more
Melchizedek Priesthood holders), because he really wasn't sure about her
long-term prognosis. This all came as a total shock. We were prepared for her
being born prematurely, but this was not at all what we were expecting. I
frantically tried to locate my father-in-law, but was unsuccessful. I was able
to locate my step-father, and he made it to the hospital in time to help me
with the blessing. She was given the name Sarah, after her maternal great grandmother.
We barely had time to finish the blessing before the flight nurse wheeled her
off to the helicopter. Mom was still in recovery, so she missed a lot of what
went on. I filled her in as best I could and suggested that I stay with her,
but she encouraged me to drive to the hospital to be with Sarah.
It was a 40 minute drive to Primary’s and I was praying the
whole time that Sarah would be okay. The hospital staff was pretty busy trying
to get her stabilized. They put her on a respirator to raise her blood oxygen
saturation which was low because of her slightly underdeveloped lungs. They
started some testing on her, but they weren’t prepared to give me any
information, just that she was stable and that I should go home and get some
rest. They’d have more for me in the morning.
September 12 – I got to the hospital early and was directed to
the NICU. I was briefed on the NICU procedures and after washing up and
gowning, I was taken to Sarah. She was in an incubator. She no longer had the
respirator attached, but the incubator was being fed with a 42% oxygen mix. Her
blood oxygen level was still on the low side, which is why she needed the extra
oxygen. The resident doctor came by to
update me on her condition. He explained that she indeed had a heart defect that
was serious, but right now, it was not life threatening. They had performed a
more extensive ultrasound and had found that she had a small hole in her
ventricular wall/septum (separates the left and right ventricles (lower part of
the heart)) and a much larger hole in her atrium (atrioventricular canal
defect or AV canal). In fact, they weren't even sure she had an atrial
septum (separates the left and right atriums (upper part of the heart)). This
means that red blood (oxygen enriched) and blue blood (oxygen depleted) would
mix, causing poorly oxygenated blood to flow throughout her body. That’s
probably why her oxygen needs to be so high right now; that and her
underdeveloped lungs. It wasn't clear yet how much the blood is mixing and
whether or not something needed to be done about it. Apparently, it is not
uncommon for holes in the heart to close up on their own. A cardiologist will
be assigned to her and will most likely do further testing over the next few
days.
September 13 – Didn't
learn anything new today. Sarah appeared to be doing pretty
good. They were able to lower her oxygen from 42% to 35%. That’s at least a
step in the right direction. I was able to touch her and stroke her through the
incubator, but I was not allowed to hold her. She needed to stay in the
incubator so she could get the oxygen she needed. It’s a pretty helpless
feeling.
September 14 - Mom was released from the hospital today. She
was still a little sore and decided to wait until tomorrow to go and visit
Sarah. They put a nasal cannula on Sarah so she could get her oxygen through
that instead of pumping it straight into her incubator. They reduced the oxygen
level to about 28%. Now that she doesn't have to stay in the incubator to get
her oxygen, I was finally able to hold Sarah for the first time. It was a
little awkward with all the tubes and wires still attached to her, but it was
wonderful to finally get to hold my little girl. She was also allowed to start
eating today. Up until now, she has been subsisting on IV fluids to keep her
hydrated and fed. They inserted a feeding tube through her nose and were
feeding her 8 cc of formula every three hours. It seems like she’s making some
good progress. No news on her heart problems.
September 15 - Mom got to visit Sarah today and hold her for
the first time. That was a pretty special moment. Except for everything she’s
attached to, you’d never guess that there was anything wrong with her. Her
feedings were increased to 17 cc per feeding. She is still being fed through
the feeding tube. We’re not hearing much from the doctors, so we’re taking that
as a good thing. Maybe Sarah will get to come home sooner than we thought. She
really seems to be making good progress.
September 16 - Sarah graduated to a bottle today. The feeding
tube was removed and she was able to take 40 cc per feeding from the bottle.
Her respiration rate has also decreased significantly, which we were told was a
good thing. The doctor is still concerned, however, because he thought she
should have been off the oxygen by now. We’re cautiously optimistic that this
is nothing major and that she’ll be off oxygen tomorrow. We need to be positive.
September 17 - Sarah’s respiration rate increased today. They
thought that the bottle feedings may be interfering with her getting enough
oxygen, so they went back to tube feeding her. They took some chest x-rays as
well as another ultrasound. The x-rays showed that her heart was enlarged,
tell-tale signs of congestive heart failure. That sounded pretty scary to us.
The doctor explained that it just meant that the heart was surrounded by too
much fluid, making it harder for the heart to pump effectively. They prescribed
diuretics to try and reduce the fluid retention around the heart and lungs. The
ultrasound showed that the ductus arteriosus or vessel that connects the aorta
and pulmonary artery was still open (patent). The ductus arteriosus is normally
open while the baby is in the womb, but closes soon after birth. When it
remains open, oxygen-rich blood from the aorta and oxygen-poor blood from the
pulmonary artery mix, causing a strain on the heart and increasing blood
pressure in the lung arteries. This is a congenital heart defect (defect
present at birth) that they call patent ductus arteriosus or PDA. Apparently,
this is a fairly common defect. They believe that this is a contributor to her
heart failure. We were disappointed with the set back, and obviously concerned.
We know that the doctors here are the best, so we’re sure they’ll get this
under control. We will just need to be patient and remain positive.
September 18 – We got to the hospital just in time for Sarah’s
feeding. She’s still on the bottle and took 35 cc of formula for us. Not quite
as much as a couple of days ago, but still a good amount. The doctor decided
that he wanted to start Sarah on some medication that would close her open or patent
ductus arteriosus. If it was going to close on its own, it should have closed
by now. The next obvious step is medication. If that doesn't work, they might
have to resort to surgery. I’m glad they aren’t jumping on the surgery
bandwagon yet. If the medication works, it should only take about 48 hours to
see the results. The only downside is that Sarah won’t get to eat while she’s
on it. That’s a long time for a hungry baby. The IV fluids will keep her
hydrated and give her the essentials she needs. It will be a long two days. She
still needs to be on oxygen, but hopefully that won’t be for too much longer.
Once this vessel closes, maybe she’ll be off.
September 19 – We had a nice surprise today. They moved Sarah out of her incubator and put her in a crib. They were also
able to remove her oxygen. We didn't think that would happen for a few days
still. Her nurse told us that she has been very fussy and hungry. I feel so bad
for her, especially because she has no idea of why she has to go without food. Only
one more day and she’ll be done with the medication. We tried to calm her with
a binky, but she’s not a big fan. She spits it right out or just won’t take it
at all. She is awfully fond of her fingers though. Once she gets those fingers
in her mouth, she calms right down. They don’t stay in for long, but they’re
convenient and she knows just how to get them in her mouth. It’s kind of cute.
My dad came to visit her today while we were there. Visitors really aren't
allowed in the NICU, but grandparents and siblings are an exception.
September 20 - Sarah finished up her last dose of medicine
today. They performed another ultrasound
to see if the medication worked. The technician thinks the vessel closed a
little, but not completely. I’m still optimistic. It may not have closed
completely yet, but maybe it will keep closing. Besides, the technician isn't
the final say. A doctor still needs to read the ultrasound before we know for
sure. After a long two days, Sarah got to eat again at 10:00 pm. Her stomach
must have shrunk a little because she only took 25 cc. Mom got the privilege of
feeding her.
September 21 - Mom got to sponge bath Sarah and then feed her.
She only ate 30 cc, but that was more than last night. Sarah was a very content and happy baby today.
I think she likes having real food in her tummy. Unfortunately, they had to put
her back on oxygen. Her nurse informed us that the radiology doctor looked over
the ultrasound and that the vessel did not close at all. That was disappointing
news. I guess that means the next step is surgery.
September 22 – I prayed throughout the day today that the
doctor’s analysis was wrong and that the vessel would still close on its own so
that surgery wouldn't be necessary. I was quite encouraged when we went to
visit and learned that Sarah’s breathing had slowed down and that her heart and
lung x-rays looked much better today. Her neonatal doctor seems to think that the
ductus may have closed. That was a prayer come true. Even better, the nurses
heard rumors that she may be discharged next week. We left the hospital tonight
quite elated. Everything is starting to look up.
