Quick Trip

Back at the house. Just a quick visit. RSV has a typical course where it peaks at 3-4 days, then hangs out for awhile afterwards. With premies, the schedule can be extended some and the team thinks we probably endured the majority of the spike at home. Trust me, we have the lack of sleep to prove that 🙂

They kept their vitals up off of oxygen, were low maintenance throughout the day, and we felt good about continuing supportive care at home. RSV in a little one is one of those things if you read too much on WebMD about it, you’d want to stay in the hospital until they seem perfect, or at least buy a few monitors and install a wall suction unit.

Thanks for all of the love and support. It means a lot to us.

For today’s pictures, once they were off oxygen and proved they could keep their vitals up, they let them unofficially move in together. It’s cute to see them squirm to get closer to each other, then fall asleep cuddled together. The bonus picture is of the view from Dorothy’s room, complete with the Tower. Different hospitals but we always seem to get rooms with a view of campus.

Back To The Land Of Monitors

Starting on Christmas, Dorothy, and then Ana, started showing signs of a cold. Stuffy head, coughing, sneezing, and the like. The other girls had something, so we figured they must have passed it on. We took the older three into the doctor. They all had some virus and two of them had secondary infections from that. In asking about the twins, basically, unless they had a fever or wheezing, there wasn’t anything to really check out.

Fast-forward a week, the twins are still under the weather and starting to get worse. The cough changed. There was a little wheezing on occasion. They weren’t eating the same way as before. Even though we have an appointment on the books already for Tuesday, we squeezed them into the doctor’s office today.

The doctor wasn’t happy hearing them, and then was doubleplusunpleased seeing their sats. Oxygen saturation in your blood should be pretty high, 97%-100%, that ballpark. Both girls were in the 80% range. Along with a positive RSV test result, not only did this mean a return to the hospital for both girls, protocol dictated that they needed to be medically transported to be monitored in case levels dropped further.

An ambulance came to the clinic, slid both girls in a transport incubator, and headed off with V riding in the jump seat while I failed to maintain a 500-foot distance following in our van.

Instead of returning to their hospital of birth, we’re at Dell Children’s Hospital now—the same one Olivia stayed at during her major asthma attack and where Catalina had her tonsils removed. It’s literally in our neighborhood.

RSV, or respiratory syncytial virus, is one of those standard viruses that most people wouldn’t care about. For healthy folks, basically, it causes a cold that lasts a week. For vulnerable groups—such as infants in generals and premies moreso—it can be gnarly. Per the CDC, it is the most common cause of bronchiolitis and pneumonia in kids under 1 years old in the U.S. Just yesterday, one of Austin’s TV stations reported on a spike in infant hospitalizations due to RSV.

We were initially taken to the ER to be “stabilized”. Protocol, again, dictated that we make a pitstop in the ER for everything to be checked out in an environment where if they made a sudden turn for the worse, everyone would be ready. Fate would have it that the resident physician that the girls had while in the NICU was working in the ER tonight and assigned to us, so we were able to catch up a bit.

Of course, this is the one day we dressed them alike. Their matching Christmas onesies are the warmest clothes they own which are also perfect to confuse the medical staffs treating both girls at the same time!

We’re in the unit now—regular hospital rooms, not the NICU—with each of the girls in their own room and settled. The plan is to monitor, wean them off of needing oxygen, and get them past the worst of it before back to home care.

 

Day 11: Eviction

Home.

Plenty I could say, none of it matters at this exact moment. We’re home and beginning the second half of the marathon, as Marion put it, tackling premies at home without a NICU nurse bedside all night and able to take care of the 2 am feedings.

Day 10: Normalcy

Medically, Ana’s bilirubin is back within the expected levels so no one is under the lights again. Dorothy’s crept up a little, but thinking she’ll be able to self-regulate. At this point, we’re looking at a couple of days to ensure stability and then, perhaps, home.

I relieved my in-laws at the house to put some normalcy. It’s truly amazing and humbling that they swung into action, took care of everything at the house with the three older girls with little direction from us, allowing us to fully focus on the twins and Vanessa.

I confess, it is odd to be in a quiet house without any heart rate monitors, pages over the intercom, and the rest of the random noises of being at the hospital virtually 24 hours a day for over a week.

I have the feeling the house won’t be quiet for long.

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 8: Roller Coaster & Gratitude

Quick update for tonight: The roller coaster continues.

After yesterday’s emotional setback, today was good. Labs came back good. Girls’ weights are doing well. Temperature regulation is going well.

It’s almost as if yesterday didn’t happen and we’re cautiously optimistic that we’re playing the short game again.

Thank you all for your support and prayers.

We’re lucky—the girls have been easy patients for the NICU and, quite frankly, we’ve never had a reason to seriously worry regarding their outcome. A lot of NICU experiences aren’t so pleasant. I’ve had a niece born at 2 pounds, 13 ounces 17 years ago and a nephew who stopped breathing extremely young—both earned them helicopter rides. One is doing great in high school, the other graduates from college next weekend—both were in danger of never coming home. We’ve had friends lose their little ones or their day of setbacks included learning that an emergency surgery with a handful of follow-up operations was the only chance of maybe saving them.

We’re blessed by the community that we’re in. All of you all sharing your experiences, prayers, time, food has been amazing. I truly feel for the parents here whose spouses can’t take the paternity leave I’m able to take, who are relatively new to the city, don’t know many/any people and don’t have the steady flow of text messages of support, offering of food and/or babysitting, the first time parents having their little ones in the NICU and freaking out over the extraordinary aspects of the NICU and the ordinary aspects of new parenthood, those who don’t have grandparents who are able to drop everything to become mom and dad to older siblings for a week and have to juggle everything themselves.

I owe a number of y’all return text messages and, don’t worry, we’ll ask for more help soon. 🙂 The idea of having seven of us at home, aiming to maintain a 90-minute feeding routine every three hours to ensure their weight, keep three meals in the other five, getting everyone to school on time in clean clothes with the hair attempted to be fixed is, well, in some ways, more intimidating than the NICU (now that we know we’re not in serious danger).

In short, today was a good day. Thank you for helping make it so.

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.

Pictures!

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!