Beth, Steve and Family!: Racing the clock

I’m not sure if we’ve ever walked everyone through our daily routine. Bethany mentioned “Groundhog Day” a couple days ago – the parallels are unbelievable. Today, I tried switching something around and thought to myself “…I’ll see how it works and if it bombs, I get to start over tomorrow…”.

So here’s what happens:

Bethany wakes up at 6am to pump – I sleep through this some days (she’d tell you it’s more like most days)
At 6:30, it’s back to sleep until usually 8:30 (or 9:30 on an especially leisurely morning). She pumps again and I start getting ready…
We try to grab something small for breakfast (today, Bethany made me bacon and eggs and oranges for breakfast – wasn’t that nice of her?!), take care of some small chores around the house, clean up the bedroom, keep the cats company, and try to get ourselves into an appropriate frame of mind for our day ahead.
At about 10:45, we leave the house for the hospital. In true Groundhog Day fashion, we seem to stop at the same traffic lights as we drive the exact same route in to the hospital. We don’t get the same parking space every day, but we can appreciate the variety that introduces. We make the same walk from the parking lot in to the main entrance. Each day, we have to wave our folded pink cardstock “Visitor’s Passes” (though the only people in the entire building who care about them are the front desk staff). Today, I unintentionally held up the pink Valentine’s Day cards that the night-shift nurses made for us on behalf of Lilly and Josiah. Pointless institutional policies are not just a separate blog post, that content could easily be its own blog.
One of the two main elevators at the hospital has been out of service for the last few weeks. As hospital veterans, we’ve learned why the staff take the stairs:
- A couple flights of stairs shouldn’t be that difficult for young people in good health
- Waiting around for 5 minutes for an elevator several times a day adds up too quickly
- Visitors are afraid of the stairs and would rather put 15 people in an 8 person elevator to go up one floor than wait for the next one (My brother and I have first-hand experience with this - squishing extra people into an elevator because you're in a hurry turns out to be a bad idea after the elevator gets stuck)
We get up the stairs to the security doors where we get to call and identify ourselves to the NICU receptionist. They buzz us through and we get into the NICU unit where we’ll spend our day. Coats and sweatshirts go on the hooks, bags go on the floor, and we get to scrub at the sink. This scrubbing, while understandable, is brutal after 5 and a half weeks (6 weeks on Wednesday, wow!), my knuckles and other spots on my hands are so sore from being scrubbed that I have to put lotion on them several times a day.
After scrubbing, we put on our fashionable yellow gowns (the yellow you’ve seen in all the pictures), pick up our bags, and head in to see the kids. The nurses check our wrist band numbers to make sure they match (to avoid a Jim/Pam wrong-baby issue for those who watch The Office) as we’re setting down our stuff.
[Are you exhausted yet?]
A few minutes before 11:30, we get to take Josiah’s temperature, change him (and hopefully not have to change his blankets/clothes), and wrap him back up (which has helped me develop my swaddling skills). Josiah then gets fed and at 12:30, we do the same with Lilly.
At about 1:15pm, we escape downstairs (actually down the stairs) to the cafeteria for lunch. The cafeteria staff are extremely friendly - we have several friends there who we’re always glad to see and talk with for a bit. We get a sandwich from the deli most days (though I enjoy their salads - it’s about 50/50) and take a few minutes to talk about something other than babies and the hospital.
Before we know it, it’s 2:15 and we head up the stairs, wash our hands, don a new gown, and head back in to take Josiah’s temperature, change him, et cetera. At 3:30, Lilly gets her turn, and at about 4:30, we put them both back in their cribs to stretch our legs. This is the most awkward part of our day at the hospital – sometimes we go down to the cafeteria for an ice cream snack (talk about something bad to introduce to a daily routine), other times we just grab a drink, other times, we’ve sat in the hospital’s main lobby and read magazines.
At 5:15, it’s the same changing/feeding routine. At 6:30, the NICU closes for an hour while they do their shift change. We try to start Lilly’s changing/feeding early so that she’s finished when they chase us out at 6:40 or so.
At this point, we come to a fork – much like a “Choose Your Own Adventure” book… Some days, we run out for errands and a quick dinner before returning to the hospital at 8:00 for Josiah’s 8:30pm (and Lilly’s 9:30pm) feeding/changing. Other days, we take off for the day and head home.
When we get home (7:30pm when we come right home, 10:30-11pm when we go back after dinner), we have some things to take care of around the house (including usually one or two loads of wash that we need to clean and take back to the hospital), try to relax for a short bit, and then get to sleep. Our ambitions of getting to bed early are completely impractical, but we try anyway.

I can’t believe that we’ve repeated that cycle (or some variation)36 consecutive times (I’m glad to have not included the hour and a half each morning and evening it took to dress my burns!).

Today’s Progress

I can’t believe you’re still reading…

Today, we talked with the doctor taking care of Josiah about his caffeine and his bradycardia. After talking to a doctor last weekend, we expected Josiah to come off of his caffeine sometime this week. Since he hadn’t (and we were getting the sense that he wouldn’t be for a while), we wanted to check in and fill in the gaps.

The doctor was kind and took time to help us identify what we misunderstood from our previous conversation with the other doctor. In a way I was especially thankful for, she allowed us to be sad and helped us by providing more details and information. At one point, it sounded like Josiah might be in the hospital another six weeks – after thinking he would likely be home in more like two, that was a huge blow. She let me be upset and then explained the situation further (where we were then able to understand that six weeks is extremely unlikely).

[I’ll ask forgiveness from any medical professionals ahead of time if I get this wrong – I’m a bit too tired to fact-check this all at the moment] Josiah’s caffeine is to address his apnea (see KidsHealth for more details). His caffeine dose had been increased this past week when we expected it to be stopped after his transfusion last weekend. Today, we found out that the blood transfusion would address any apnea caused by anemia, but the caffeine is to address the other causes of apnea.

The NICU staff have very often told us that “oxygen is a drug” when Josiah and Lilly were getting supplemental oxygen. They explained that their goal was to get them to breathing room air instead of oxygen-enriched air as quickly as possible. Bethany and I have been, in turn, concerned about what the impact of daily doses of caffeine are for poor weeks-old Josiah who has been getting them for the last 4 and a half weeks.

About an hour ago, the doctor called to tell us that after reviewing Josiah’s chart, she was going to try stopping his caffeine. After her review, she felt that the majority of his apnea/bradycardia episodes were feeding-related (coordination problems, not apnea caused by his prematurity) that aren’t reduced by the caffeine.

Without caffeine, the hope is that Josiah continues to make progress and doesn’t start having more apnea/bradycardia episodes (which would indicate he needs the caffeine to keep them under control). After the next five days, as the caffeine gets out of his system, we’ll have a good sense of how he is doing. I don’t believe he’ll be home six days from now (Beth and I still get the sense we’re looking at more like two weeks), but getting off of the caffeine is a huge milestone – no matter how well he does with his feedings, he can’t go home until 5 days after his caffeine stops.

While we were at the hospital today, I asked the nurse to show us how she feeds Josiah. I had been (as Beth mentioned in a previous blog post) slightly unsuccessful over the last couple days trying to feed Josiah. The nurses have all had very successful feedings with him and it wasn’t hard to identify myself as the “weakest link”. It turns out I was feeding him way too slowly. In my defense, a few days ago his heart stopped each of the three times I tried to feed him because he got a big mouthful and stopped breathing (instead of just swallowing). Watching him turn pale and his lips turn blue is an indescribable feeling that left me a bit gun-shy with feedings after that. I was giving him too many breaks which made him frustrated and as we’ve all experienced, two people frustrated with each other don’t work well together.

Josiah’s other excitement of the day was when he, like us, was frustrated and wanted to go home. Without asking first, he ripped his feeding tube out of his nose and off of his face. It caused his cheek to bleed and looked (and sounded) like it hurt pretty bad. The nurses were great in getting him all fixed back up (and I was glad I got to hold his hands and comfort him while it all happened).

Lilly’s day was not nearly as eventful as Josiah’s. She is still at 7 by-mouth feedings (out of 8) and was successful all day today. We’ll find out tomorrow morning how she does overnight. If she is successful, she’ll be eligible to move up to 8 (though we expect the doctors will want her to have a couple successful days before advancing).

Like the excitement of a rest stop on a long drive, here are tonight’s pictures: