I’m just going to post the emails I sent out this morning to family.
Here’s the first…
“Preemie time in the NICU is a lot like a roller coaster ride. Olivia Moonpie’s
first week has been really really good, but last night her roller
coaster went down it’s first hill. She’s returning to normal now, but
it was a little scary for a few hours…at least for me and Shannon.
For the past couple of days, Olivia Moonpie has been pooping regularly and
steadily going up on the amount of breastmilk they’ve been feeding
her. Yesterday, they started adding calories to the breastmilk
(breastmilk alone has 20 calories per ounce and they increased that to
22 per ounce. She has been getting a little less than an ounce every
three hours). That was in preparation for taking her off the IVs that
are giving her additional nutrients and fats because she has been
having a hard time keeping an IV for more than 10-12 hours.
So, last night around 6pm, she had blood in her stool. This can be an
indication of a few different things. The worst case is something
called NEC or necrotizing enterocolitis. The really bad scenario with
that ends with bowel perforation and surgery. Other issues with that
symptom can be a bowel infection, or simply not tolerating the
increased calories very well.
She also started having a very difficult time breathing on her own.
Since birth, she has been doing all the breathing work herself with
the bubble CPAP just providing pressure to help keep her lungs
slightly inflated until she produced enough of the surfactant herself
to help keep the air sacs from sticking together.
They suctioned her airway and found a lot of mucus around her vocal
cords and put her on a ventilator as a precaution. The xrays of her
lungs looked really good, so it is likely that between the mucus
(which is a common thing) and the stomach troubles, she just couldnt
pull her own weight, so to speak. The ventilator lets her rest and
she was at almost room air concentrations of oxygen when we left last
night. The biggest worry with the ventilator is if she needs higher
and higher oxygen concentrations as that can contribute to problems
with the development of the retinas, so we always want her to be on
the lowest oxygen settings possible, which she has been.
The first xray of her intestines showed some worrisome inflammation,
so they stopped feeds, suctioned her stomach to remove any residual
foods and to help prevent any buildup of air. They started
prophylactic antibiotics and started a blood culture to see if she has
a blood infection. We won’t have the results of the culture for 48
hours. They also started a second IV in her scalp (the veins there
are easy to get to, and a little sturdier) to give her a blood
transfusion since her red cell count was low. Once the blood culture
comes back, they may make the decision to start a PIC line, which is a
large gauge, long-term alternative to an IV that goes into an artery
and won’t need to be replaced as often.
Her second xray at 1am was much improved. The inflammation in the
intestines was noticeably reduced and her color was much better. The
nurse practitioner said that those results significantly dropped the
fears of NEC and made it more likely that it was an intestinal
infection of one kind or another. Again, we really need the blood
culture to know for sure, but they were pleased with the improvement
from five hours earlier.
We went home after the 1am xray but called in to check on her at 4 and
7. Both times, she was doing much better. Back to her more fidgety,
feisty self. We don’t have the details, but the nurse said the 6am
xray was very good.
We’re heading up there now to get a better report on the little one
and I’ll let everyone know what we hear in a few hours. To be honest,
I think Shannon and I had a harder time of it than Olivia Moonpie did. Some
things bring too many memories back. But she looked really good when
we did finally leave her last night, sleeping soundly on the blanket
David and Shelia sent her. We really like the neonatologist who is on
this week and the nurse she has today is a favorite so we know she’s
in good hands. We’ll even try to take a couple of pictures because
with her on the ventilator you can actually see her whole face without
her nose all smooshed up to her eyes and her hair has grown a lot
since we last saw it.
Ok, gotta go. will update in a few hours.”
And the second…
“1. Her xray this morning looked really good. There is some
inflammation of her large intestine on the right side of her abdomen.
The neonatologist is classifying this as “medical NEC” but it falls on
the very mild end of the NEC spectrum. Because of the timing of the
issue, she feels that this is simply an intolerance for the supplement
that was being added to the breastmilk. That supplement uses proteins
from dairy milk and many preemies show an intolerance or allergic
reaction to it simply because their digestive system is too immature
to handle bovine protein. For the time being, all feedings are halted
and Olivia Moonpie will get her nutrients via IV for the rest of today and then,
hopefully tomorrow she can have a PICC line put in since the nutrient
mix is very acidic and tends to require frequent changes of the IV
site. She may lose a little weight (she was 3 lbs 3oz this morning),
but they will watch it carefully and adjust as much as is safe. After
about 7 days, the doctor will start reintroducing breastmilk, just
like we did from birth, so she slowly increases her reliance on the
breastmilk. When she reaches the point of requiring supplementation
of the breastmilk, Olivia Moonpie is going to get to receive a new product that
only a few babies in the country have had. The other Harris hospital
is participating in a study of a supplement that uses proteins from
human breastmilk and because Olivia Moonpie is in a sister hospital, she can
have it as well, without being part of the study. This is not an
indication of whether or not Miss Olivia Moonpie will have a dairy allergy later
on, it is just another aspect of not being closer to term and forcing
a digestive system to work before it is supposed to. As she gets
closer to term, they will try her on the regular supplement to see if
she tolerates it at that time.
2. Her breathing is fantastic and it appears that last night’s
breathing episode was a result of a normal accumulation of mucus that
she was just too tired/sick to cough and sneeze out on her own. She
is off the ventilator this morning and, even better, instead of being
put back on the CPAP she just has a small nasal canula (just like the
little plastic tube you see in patients’ noses on TV) that is
providing a bit of pressure to help with inflating her lungs but no
additional oxygen. That means she’s doing more of the work on her own
and just breathing room air which is exactly what we want. It doesn’t
make near the amount of noise and means she doesn’t have the hulking
piece of plastic squishing her nose all the time, just a tiny plastic
tube that rests in her nose. The entire time we were there this
morning, she never once set off an alarm and when we had to reseat the
canula’s prongs in her nose, she barely fussed.
3. She’s back to her nice pink color and wiggly, wriggly self. We
watched her stretch and yawn and blow spit bubbles this morning which
was a nice contrast to the way too quiet Olivia Moonpie we saw last night.
So, about 10 days of antibiotics which renders the blood culture
results we’ll get tomorrow kind of moot. About 7 days of intestinal
rest and then a slow return to normal feedings after that. Hopefully
a PICC line late tonight or tomorrow. Even more hopefully, good
oxygen stats all day so she can stay on the canula instead of getting
the CPAP back. They offered to let me hold her this morning, which
they wouldn’t do if they felt she wasn’t up to it, but we decided to
wait until tonight to let her rest a bit more. We’re back down to
Defcon 5. 🙂 May this be the only “event” for a little while.”