Specialist Parade

Hopefully this will be a silly post in the end. The twins are now 10 months old—incredible how time has flown by. All in all, things have been pretty good.

They’re up to 16 or so pounds now. Still tiny and barely on the growth chart, but the lines are still headed up and to the right so they’re on par for their little fifth-percentile niche. Except for their head size. True to the Kraft family tradition, they have big heads.

Which apparently is a bad thing sometimes too.

Ana’s head size, relative to the rest of her and her growth, concerned the doctor so she had a cranial ultrasound the next day. Vanessa, because of our lovely twins, have had a lot of ultrasound imagery performed by techs that passed along images to the doctor for review. She knows the drill. The techs always say things like “We’re not supposed to say things like this, but everything looks great.”

For Ana’s appointment, the strict “The doctor reviews the images and will let your doctor know.” Then followed by the dreaded “I need to check with the radiologist to make sure I took all the images he needs.” which translates to “something isn’t normal”.

Long story made short, Ana’s doctor called us into the office today to tell us that she has excess fluid around her brain. The radiologist and him believe it to be benign and that it’ll self-resolve within a year or so, but he wants us to see a neurosurgeon for a second opinion.

Both girls are still missing some development milestones, so our next PT/OT evaluation is later this week.

We started this week with zero specialists. I’d really like to end this week the same.

Ride ‘Em!

I put the twins into a playpen together in the office while working and waiting for Vanessa to get back from a walk around the block with the other kids. I step out to grab some water and Vanessa walks into the office.

“No! Don’t do that!”

Asking Vanessa what was happening… “Ana was sitting on Dorothy’s back, pulling her hair.”

Dorothy Hates Chicken

We tried baby food chicken for the first time. Dorothy isn’t a fan. V has been trying to make their own food when possible, with pouches as a backup. The pouches are actually pretty decent, but I concur with Dorothy on this one. It really was pretty terrible.

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.

 

Merry Christmas!

Merry Christmas!

We opened a few presents on Christmas Eve and planned on all seven of us going on our first adventure as a whole family. Over night, Teresa started running a fever, so we sent O and MC with Grandma and Grandpa to Mass and kept everyone else back. We were borderline about taking the twins out as it was and with Teresa sick, no go.

Christmas was lovely with a nice breakfast, present opening, a nice lunch and playing outside on their new bikes (you’d think I would have a picture of their bikes…). Catalina seems to be catching whatever Teresa has. I hope it is bacterial and the amoxicillin that O is taking for an ear infection will serve double-duty on her.

After getting them all down, V, the twins, and I sang Christmas carols and prayed the Office of Readings since we all ended up missing church on Christmas.

The Internal Clock

Life moves forward toward Christmas. The twins have matured to being released from their required every-three-hour feeding schedule, allowing them to sleep in and eat-on-demand. Generally, this has been nice. Direct breastfeeding (DBF in my acquired NICU language) has replaced EBM (expressed breast milk, e.g. pumped and “nippled” to them in a bottle) as their primary source of food with V pumping to keep her supply up.

Our fridge is full of milk and we may actually use all of the space in our deep freezer for once.

The twins have also shifted their schedule a bit. Before, we’d wake them every three hours to eat and they would generally sleep between feedings. Now, they have their own schedule of being awake for a decent amount of time, which happens so far to be in the middle of the night.

V has been handling this like a champ, taking a nap from, roughly, 8 am to 11 am, to make it through the rest of the day. While I hate sleep and will fight it until the end of time, once I’m asleep, I want to stay asleep. I’ve been trying to get 4-5 hours a night, but it has been broken up by moments of everyone (seemingly, older girls included) being up multiple times in the night. The waking up for a bit every hour or so has been hard on me, personally.

Lastly, they’re on the borderline between premie clothes and diapers and newborn sizes. We’re finding some of the premie outfits are too small for them! At first, they swam inside all of them.

With the older girls, we gave them their primary present from us this weekend—tickets to Disney Live at the Frank Erwin Center. Grandpa and I took Olivia, Catalina, and Teresa to see Sophia, Jake and the Never Land Pirates, and the rest of the Disney gang this weekend.

For the first time since the twins were born, I joined Grandma and Grandpa with the girls at Kerbey Lane, our usual after Mass breakfast stop. Prior, I’d take the girls to Mass to help keep the peace and let the in-laws take the girls since they’d do anything to get those pancakes.

We haven’t taken the twins out of the house, save a doctor’s appointment and lab tests yet. As much as Vanessa would like to have them make Christmas Mass, we’re hesitant to have them around the expected larger crowd. Perhaps the Sunday following for the Feast of the Holy Family.

Until next time, thanks as always for your continued prayers and support. It really does take a village and we live in a great one.