Day 9: Just Gotta Run

A mixed day, which is the norm now. Ana experienced the “bilirubin rebound”, as it is known in these parts, where after a day of successful phototherapy, her levels spike back up once she’s off the lights. She’s back under the lights.

Dorothy was incredibly sleepy/lethargic today. The working thought from the team is that she did so well yesterday that she’s just simply tired. They’ll run labs again to check her bilirubin levels overnight as high levels can make kiddos sleep, though she was in the green last night.

On the plus side, they were allowed to increase their feeding and given a minimum, which they generally met. Even with the possible negatives, they’re still optimistic for discharge pretty soon. They had the majority of their pre-discharge tests, lacking the “car seat study”, when they put the kids in their carseats for 90 minutes while still on the monitors to ensure, frankly, they’ll stay alive if riding in the car (e.g. their angle within the seat doesn’t cause them too much effort to breathe or whatever else). They previously passed their hearing screen, but apparently, may need to do it again for reason I don’t know due to some of the bilirubin eradication efforts.

Beyond the medical fun, two things of note on this Sunday. First, I ran the Decker Challenge Half Marathon. Long ago, I signed up for the Austin Distance Challenge, which consists of a number of runs (a 8k, a 10-mile, this run, another half, a 30k, and finishing with the Austin Marathon) with a decent break for the holiday season. I was really banking on the kids not coming until after today!

To complete the challenge, you have to run in all of the races. No exceptions. Since they’re doing well, I took a few hours off. It was painful—not running at all since Thanksgiving and eating nothing but hospital cafeteria food and take-out in a week—but finished it!

Later today, Fr. Bill, our pastor at St. Ignatius, stopped by in the midst of his day of Masses, baptisms, and cooking dinner for his fellow priestly housemates. It was a very nice visit. Fr. Bill announced at our usual 7:30 a.m. Mass that the twins were here. When he said “their names are Dorothy…and… and…”, Olivia yelled “Ana!” from the back. We’re not that social at Mass, but we’ve naturally found a good community at that particular time and, well, we stand out a lot :-).

A special shout out to Kathryn Whitaker who gave the twins their first stuffed animals—the owls seen in the pictures above with Fr. Bill. The owls are required to live in biohazard bags to be allowed in their beds!

All in all, not a bad day. We’re much more aware of the Texas two-step of the progress in the NICU. Tomorrow, we’re going to shift the schedule to put me at home half-time so the older girls remember me and to give my in-laws a break. They’ve done an amazing job taking care of the three older girls far longer than any of us expected.

Day 7: The Day of Setbacks

Today was a hard day.

The day started with the girls having another bath and their bedding changed. The purple and pink blanket trick to tell them apart is no more.

Ana was sleeping with her arm over her face reminding me a picture we took of Olivia around the same age that is extremely slow to find on the hospital wireless.

During rounds, the neonatologist prepped us concerning Dorothy. While Ana had been eating up to her allowed amount and started ever-so-slightly gaining weight, Dorothy hadn’t been eating up nor stopped her initial weight loss. If she didn’t make some gains in the next 24 hours, they would add a feeding tube to send milk straight to her stomach.

Ugh. Damn it.

Alright, that’s fine. If it helps her bulk up and turn the corner, sure thing.

Later in the day, V and I took off for a couple of hours to swap out dirty clothes for clean ones and take a shower. After a frustrating experience between insurance and a vendor trying to get a quality breast pump that could support our needs when, in a first, the insurance company telling me they covered something when the vendor said insurance wouldn’t. I should defer all insurance conversations until after we’re out of NICU.

We head back to the hospital to find…

What? They were cleared from bilirubin checks? Labs weren’t being sent off anymore. It had only been a couple of hours since we left without jaundice being on the table to phototherapy?

Their nurse noticed their coloration was deteriorating and requested the neonatologist confirm and request labs. Sure enough, their bilirubin levels were high enough to merit intervention, including VISOR-style stickies.

The day ranged from the doctor suggesting we wouldn’t be here when he returned on Monday to our nurse telling us we’ll see him next Thursday when he’s next on duty.

We’re emotionally drained after today.

Day 6: Siblings!

Wow! What a day! It was a bit of a whirlwind.

On the medical front, slow and steady. The docs have increased the allowed intake. Dorothy has slowed her post-birth weight loss and Ana actually increased one whole gram. They’re still under the warmers, though frankly, I’m in no rush to take them out. They seem to be doing better without them trying to keep their heat up on their own, so we’re fine deferring that until they’ve bulked up a bit.

Fr. Paul with Dorothy
Fr. Paul with Dorothy

Fr. Paul from St. Ignatius stopped by to say meet and bless the girls. It was a nice visit and great to feel the presence of the community praying for all of us. Earlier in the day, Vanessa and I took a few moments in the hospital chapel just in silence.

With the whirlwind of the last few days, between the chapel and the visit from Fr. Paul, it was great to pause a bit.

In Seton’s NICU, they generally have an open visitation policy for siblings, but they’ve locked it down with this year’s flu season. The twins are allowed a weekly visit from the older sisters, which we exercised today so the girls were finally able to meet them.

Teresa had a bit of a cough a couple of days ago, so she stayed in the waiting room with Mom while I took Olivia and Catalina in. Olivia, our rule follower, was very proper and formal answering the health screening questions, taking her temperature, and scrubbing in “like a doctor!” as she said.

Catalina was so excited to meet the twins. Once meeting them, she was disappointed that she couldn’t see all of the babies in the NICU! Catalina was ready to head out after a short time; Olivia, I think, could have stayed there all day.

After a lovely dinner, we’re about to head upstairs for the first night shift. Earlier today, another set of twins and another premie were admitted into our “bay” in the NICU, so it was rather hectic. I’m looking forward to being able to hold them for a couple of hours tonight in relative quietness.

With that, more pictures!

Day 5: Snuggle Up by the Fire

A small step back today: The girls were working too hard to keep their temperatures up and not quite getting there, so they’ve been stripped down and under the infant warmer again.

Dorothy’s bilirubin levels are borderline, but the team thinks she’ll keep them under control. Another check tomorrow.

It has been a good day though. I slept a bit and V is sleeping now. I give off a good amount of body heat, so I took the girls skin-to-skin for awhile—turns out I’m more effective than the infant warmers :). It has been a nice, peaceful afternoon so far—their first “Daddy Date”, so to speak.

The NICU staff has been great at encouraging us to do the parent duties—feeding, changing diapers, etc. The first diaper of Dorothy that I changed yesterday… well, let’s say she has figured out how to wiggle out of her diaper so her first load of dirty clothes is waiting to be washed.

Thanks for everyone for their kind words, help, prayers. We haven’t been worried about anything except the girls thanks to you all.


Day 4: No More IV

A quick update in case you’re on the edge of your seats 🙂

Both girls’ lab workups were good, so they lost the IVs and are taking in all of their nutrition by mouth. With their IVs coming off, they can start wearing real clothes and being swaddled. While they’re still living in the infant warming beds, they haven’t been used since being shut off (yesterday?) and are looking like normal, in-hospital babies.

We’re happy to see what feels like quick progress, though still a bit clueless on any reasonable timeline for going home if all things continue on this track. I think a nurse or NNP said they would want to see them start gaining some weight (as all newborns lose some of their initial birth weight after birth) before being considered for discharge.

In any event, forward progress, one step at a time.

We’re now in the “nesting room”, an unused hospital room in a currently unused overflow wing that allows us to have a home base within the hospital. The window has a beautiful view of downtown.

Three topics we’ll write more about later: 1. great nurses and a small world, 2. the nesting room, 3. I already hate monitor alarms.

Time for a nap, but before we go… pictures!

Daily Status Update Report

Today, V was given her discharge orders, so we’ll be leaving the 2nd floor soon.

The twins are progressing well. They have continued to meet their feeding goals (e.g. food via mouth), so they have reduced their IV intake. Their glucose levels will be monitored the remainder of today and early morning tomorrow. If all goes well, they continue to meet their feeding goals and the glucose levels are sufficient, they could possibly lose the IVs soonish.

Once they lose their IVs, they’ll work on ensuring they can self-regulate their temperatures, meaning attempting to ditch the infant warmer bed and progressing to the “normal newborn” blanket swaddle.

In short, all good news. They’ve been pretty easy as far as NICU stays go.

Since they want Vanessa attempting to feed them or pumping every three hours (give or take) and we’re being evicted from postpartum, NICU arranged for us to keep a bed warm in an empty overflow wing as long as they’re not needed for patients. While the twins have their own challenges to meet, we’re going to figure out the balance between supporting the NICU twins and supporting the three still at home. I’ve stayed overnight with the oldest girls during O’s asthma admit and MC’s tonsillectomy; this will be V’s first stay in the hospital without the staff support of being a patient.

Yadda, yadda, where are the pictures? Here:

More Pictures!

With just shy of a day under their belts, the twins are doing great. V is on track to be released from postpartum tomorrow. The twins are still looking good, being supplied by a combo of IV and mom’s milk. Breathing, glucose, and all that jazz look good with no signs of infection or anything else negatively noteworthy.