My morning started by about 7:30 in the hospital. Truthfully, this is actually “sleeping in” for us, since we are usually up by 5 or 6. However, the extreme emotion and sleep deprivation over the last few days made 7:30 feel really early.

I awoke to the resident endocrinologist examining Lyla. I chatted with her for a few minutes. She was actually the only one to ask if we had any family members with endocrine problems. Most of the doctors and nurses had asked if we had diabetes in the family. She asked more broadly, which is interesting because my sister’s boy needs growth hormone shots. We talked about that for a minute. She cited that it was likely unrelated, but still interesting that two cousins would need the same specialists. Dr. Lindsay came in to talk to us again. He seems to be very calm and relaxed. He talked to us about her previous day’s sugar levels and about the modifications he was going to make to our plan going home.

Next, the nurse arrived. Truthfully, she was my least favorite of all the nurses. Yet, I seem to remember her name (Gretchen) while I have totally forgotten the rest (Greg tells me their names were Jessica and Angelina). Anyway, Gretchen made a little list on our white board of everything we needed to do that day. They had originally said we would be there until 5 or 6 that day. Then, the night before they said that we could probably leave around noon. I had considered going home and spending the night at our house with Nick, but figured if we were leaving by noon then the drive was not worth it. As Gretchen was making the list, she speculated that it would be dinnertime before we could leave. We were both disappointed. At this point, Lyla was likely one of the healthiest children in the hospital. We caught the diabetes early enough that she didn’t have ketones in her urine and hadn’t gone into diabetic ketoacidosis. We felt comfortable enough with the sugar testing and insulin shots. In fact, we felt she would do better at home where she would eat normally and nap. Plus, we both badly needed a shower!

Lyla got breakfast and watched the “Price Is Right” while I pumped. Gretchen came in several times while I was pumping and seemed to linger some. It was really quite awkward. During our time in the hospital, when the nurses or staff came in while I was pumping, most of them left quickly. Not Gretchen. She even asked if we wanted to start the education classes, to which I replied that I would like to finish pumping and get my shirt on first.

A different nurse did our education. We talked about hypoglycemia and hyperglycemia. Again, nothing too difficult considering my background. Lyla and Greg colored with her new crayons while we learned. Once the nurse left, we were eager to continue with the teaching so we could get out of there. It turned out that the social worker was not coming. Then the pharmacy reported back that they couldn’t teach us insulin pens on a kid so little. The only things left on the list were more nurse education and the Juvenile Diabetes Research Foundation. They weren’t sure if the JDRF was coming though. We ordered Lyla lunch so it would be there before she got too hungry (sometimes it took up to an hour to get her food). Then Greg decided to take Lyla for a walk so I could start cleaning up and packing the room. I walked out with them for a minute and met Gretchen in the hallway. She informed me that the social worker and pharmacist were not coming and the resident was working on our discharge papers. I was thrilled. She also said, however, that she had sent our medication down to the pharmacy. If we wanted Lyla to eat lunch at the hospital, we’d have to go get the medication. I thought it was pretty flighty of her.

I met up with Greg and Lyla on their walk. Lyla and I continued walking while Greg went into the pharmacy. We got upstairs and saw that Lyla’s lunch was waiting. Greg met us up there a few minutes later. Then we waited for Gretchen for a very long time. We were ready to test Lyla’s blood and let her eat, but at the hospital, they had to check her blood with their monitor as well. Nobody was able to find Gretchen, so we just sat and looked at Lyla’s food. You can imagine how impatient a one-year-old can get when she is hungry and looking at her food.

Finally the tech arrived to do the blood sugar test. We told her that we had struggled to get enough blood for both monitors and had pricked her twice with many readings in order to make it work. We were really hoping to get enough blood so we didn’t have to poke twice. The tech reassured us that we would make it happen. We got Lyla’s finger pricked and the tech put the blood on the strip, only to realize that she had forgotten to scan Lyla’s hospital badge first. We had to do a second poke. Greg was ticked. Lyla was happy just to finally get her lunch and watch Barney. The tech felt so bad that she brought Lyla a necklace and bracelet set, along with some Play-Doh, and found her a new Barney movie to watch.

Lyla slowly ate her lunch. Greg and I were starving, but figured that we could grab something to eat on the way home. Greg even started loading bags into the car. Lyla finished and we were ready for insulin. Again, we struggled to find Gretchen. We waited for quite a while again before we could find Gretchen and give Lyla her shot. We wanted to leave the hospital, but Gretchen said we had one more lesson to do with the educator and needed to do our discharge paperwork. Again, we waited for the educator to become free. Finally she came in and we rushed through the paperwork and lesson. Finally, we were allowed to leave. The tech walked us out to our car to ensure that we were putting Lyla in a carseat.

We left at about 2:30, almost exactly 48 hours after our adventure had begun. Lyla was asleep before we got to Foothill Blvd. We stopped to grab a bite to eat at a drive-thru and then headed home. I was eager to see my baby, but we decided we needed to shower first because Primary Children’s was full of kids with RSV. We got cleaned off and then woke Lyla up. She was not happy to be awake. Finally we went to my parents to get our little baby. He gave us huge grins and was excited to see us. My parents bought us dinner from Cafe Rio and Lyla’s favorite cousin, Ally, came down to visit. Lyla had gotten an old, broken poker from the hospital and pretended to give Ally pokes with it. Nicolas started to fuss, so we finally loaded up to get the kids home and to bed.

We were happy to finally be home with the four of us back together again. Greg started bathing Nicolas. I started to deal with a messy, messy house. We had bags from the hospital, Nick’s bags, and the mess of having chaotically packed. We even had dishes in our sink from Monday afternoon. I began the long process of re-claiming the house when the power went out. The wind outside was horrible as a storm was coming in. I expected the power to return quickly. It did not. I will admit that for the first time during the week, I murmured a little. “Really, God, Are you serious?” I guess He was. So, we sat around with a messy house, trying to decide whether to get the kids in bed in the dark. We finally got Nick down and then got Lyla in her pajamas. She badly needed a bath, but we were worried she’d be cold if the power didn’t come back on and she had wet hair.

I’m sure it was quite the scene to watch Greg and I fumble with the flashlight (we only own one) and try to find Lyla’s supplies to check her blood sugar. As luck would have it, it came back with a value that left us clueless of what to do. It was at 248. Normally, between 200-250, she gets a 1/2 dose of insulin, but those corrections are divided in half at bedtime. Did Dr. Lindsay really want us to give her a 1/4 of a unit of insulin? I know you all cannot see the shot needles, but just trust me that it is a really, really small amount. Further, Lyla is supposed to have a “free” 15 gram carbohydrate snack at bedtime. Was this still the case if her blood sugar was high? We finally called our good friend Laurel, who is an MD, to get some advice (no 1/4 unit, no snack — Dr. Lindsay later told us the same thing. Good job, Laurel!). We gave Lyla a non-carbohydrate snack and as we were finishing, the lights came back on. I was very relieved. I heard the next morning that our neighborhood was the first in Lehi to get lights back and other areas were out until 11 or 1. Maybe God did have some sympathy for me?

I pumped while Greg watched TV and played on his computer. It was the first “normal” moment for us in the week. We were both exhausted and headed to bed fairly early. We set our alarm for 2 a.m. so we could check Lyla’s blood sugar. When she was seven weeks old, we were setting our alarms to get up and feed her so she could gain weight. Here we are again, setting alarms for the middle of the night to attend to her needs. When she asks me why I am tired when she gets older, I will tell her it is because of her.