Well! Our crazy week is over, beginning what will be a lull and reprieve from scheduled doctor’s visits for another two months when we have a new round of checkups. Easter Sunday was by far my favorite day of the week. Not just because of the holiday and what it stands for and means to me personally, but because I got to have both my dudes (dressed up and looking incredibly dapper!) accompany me to church. It was wonderful to have my whole family with me, and to get to spend that time, as well as to share something very important to me with the people who are most important. Conner was a good, quiet baby like he almost always is, and watching Doug bounce and play with him was so very sweet. That part isn’t new, however, I love watching the two of them together all of the time. Doug always points out how much the baby loves his Mommy, but he very much loves that Daddy, too.

We had a quick transition from relaxation into a bonkers McCrazy kind of day, however. Monday we left town to make the nearly four hour trip to St. Paul, Minnesota where Gillette Children’s Hospital is located. We have an incredible hospital here in Fargo, the only Children’s Miracle Network hospital in the state (more on this later), but they do not currently have a sleep study program for the really little kids. Our sleep doctor has been working on getting one up and running for years, and had hoped to have it ready in time for this but it wasn’t quiet there yet. I packed everything meticulously, and made myself half-insane trying to calculate how many bottles and bags of milk I should bring, compared to how much I expected to pump while we were gone, figuring in fun times spent at Mall of America and Trader Joe’s and Cabella’s on the return trip so that the whole thing didn’t feel like such a slog just for this appointment. We learned last time that there’s no packing light when you’re traveling with an infant, and while I’d like to think I did better/more reasonably this time it was still a lot.

Conner was a little dream on the drive, because as is his usual, he slept basically the whole way there. We stopped to get a bite to eat for all three of us, and fill up on gas, at a truck stop and got into St. Paul an hour later than I’d intended to, but still an hour before the appointment. I assumed that the baby would sleep the whole way and wanted to give him time to be awake before he was expected to go right back down into dreamland again. We spent some time in the Ronald McDonald house, which provided us with dinner and a very comfortable place to hang out while we waited. The technician who eventually came for us was actually the same lovely lady that assisted us when we were there in January, and it was nice to see a familiar face. This was, sadly, where the pleasant times ended for the night.

My poor, sweet, tolerant little baby was not at all happy with the wires and equipment. He made it through everything being strapped and hooked to his body but when they moved on to placing sticky diodes on his head and face, and all of the sensors for monitoring his breathing it went downhill. They use a mesh stocking of sorts to keep everything in place, with a whole cut out for his face, and that was game over. I’ve never seen my son cry longer than about thirty seconds after something was done to him, whether it’s an IV in his forehead, or a blood draw, or vaccinations. This time, he didn’t seem to be able to stop and the longer it went, the higher my stress got. I itched, and ached, for them to be finished so that I could pick him up, give him his bottle and soothe him, but when I finally could he would only take the bottle for a second before he went back to expressing how very sad he was over the whole affair. It hurt. I was trying, and failing, to hold back my own tears while I struggled to find some position he’d like better, or the right noise to make to distract him. When Doug offered to take over a large part of me didn’t want to let him, but I was tired, sore and didn’t know what to do.

Once Doug had managed to soothe the baby, I finally let myself leave the room in order to go pump. When I got to the room that my husband was staying in, however, I couldn’t find any of my pump parts. I swore I had packed them into the bag, but after ransacking it a half dozen times I realized that maybe that was what we were both sure we were forgetting as we left the house. Already stressed out, now my brain was chiding me for not being able to feed my child who I’d just resigned to an evening of torture, and I rushed back to the study room to ask if maybe, by any chance, they had pump parts. They didn’t, but were attempting to coordinate with the Regional Hospital that they shared the block with in order to find some for me. Our technician warned me that all the stores in the area shut down at eleven so I might want to go just in case.

Doug offered to come with me, since he couldn’t go solo not knowing what I actually needed, but I couldn’t leave Conner there at the hospital by himself whether or not he was sleeping. I regretted that choice the moment I pulled up the closest Walmart, took in the people milling around and the police cars that seemed to be idling in wait of the inevitable problem. As I was going in, I got a call that the hospital had come through on the pump parts, but I went in anyway for snacks. After leaving, with keys in stabbing position in my hands, I was driving back to the hospital when I had a literal wrong side of the tracks moment that involved a man laying in the street without any clothes on. There were others stopped, and part of me thought the right thing to do would be to get out and offer what training I had myself, but my brain was shrieking ‘don’t stop! don’t stop! don’t stop!’ and so I didn’t.

The night has hit peak ‘gone wrong’ at this point, right? Wrong. As I arrived back at Conner’s room, the two nurses at the desk outside had transformed into a group of patients and more nurses who were now playing a noisy card game inside the ‘quiet zone’ and each whoop and bit of conversation was making my little guy twitch and turn and clearly not be sleeping well. I was about to explode in multiple different ways, so I finally went to pump and Doug went back to the room in order to handle the situation so I didn’t have to myself (a bit of a running theme, which is one of the many reasons this man is my hero). The nurse for the sleep study actually thought that Doug was joking when he told her there was a noisy card game going on. I guess there’s some meme or other going around about RNs having time to play cards and not actually working.

After getting relief physically, I went back to Conner’s room to crawl into bed and read or watch some netflix but at this point I was completely exhausted. It was about this time that I started getting texts from my husband down the hallway that he thought he was going to be, and then truly was sick. We still aren’t sure if it was food poisoning, or exposure to some kind of nut, but either way the poor man was throwing up all night long. The staff at Gillette really deserves praise for how helpful and attentive they were to us, and hopefully won’t spend the rest of the week talking about the needy, disaster of a family that we were.

Not only were our trips to the Mall and other fun places off, but now I’d need to drive home. Conner slept better this time than he did the last time, but I still had only had maybe four hours. It was more than Doug, who was still throwing up when we left, had gotten though. I managed to slip in a trip to Trader Joe’s under the pretext of getting something for him to drink and some napkins, but it was certainly not the trip that we had imagined. I’d never been so happy to get home from anywhere in my whole life. If it weren’t for the kind, patient healthcare providers it could have been much worse.

Obviously, I was hoping that this time with Conner sleeping so much better we’d be told that yes! He could come off the nightly oxygen. That was not, however, what the Doctor from Gillette told me. Conner was still having apnea events, and his oxygen levels had been lower than they wanted for a period of time. I tried to justify this, asking whether or not his congestion from a bit of a cold could have contributed and he told me yes, that was possible. Then after a pause, he very gently said that he thought I was being a very good parent by trying to explain and pinpoint reasons for what they were seeing, but that I should remember that children with Down Syndrome have small airways, and that this could just be a fact of that. I appreciated his kind reminder, and the fact that he wasn’t going to let me convince myself of something that might not be the truth. Our own doctor here agreed with him, and so we will continue to be on oxygen at night, with another study done when he is one year. It’s not what I wanted to hear, and with the state of my head after that 48 hour period, I really can only think that I was having my prayers answered. Not what I really wanted, but the backup contingency prayer that I had included every night that week of ‘and if this study does not go the way I want, please, please help me to accept the outcome.’ The study, overall, went better. Conner slept more like himself, and I found it much easier this time to take them at their word.

In many ways, I know that despite the setbacks or things that I wish weren’t so, I am very lucky. I have joined a few support groups on facebook that are intended for parents of children with Down Syndrome. I enjoy getting to see all those smiling babies, but as is often the case with the internet people usually go there to vent, or talk about the miraculous. I have seen so many pictures of little children, post open heart surgery and parents talking about how they’re on overnight hospital stay twenty for the year so far. My family is very blessed. Conner is more or less healthy, and in comparison his little whiff of nightly oxygen, and the small holes in his heart, are practically nothing.

I’ve never really considered myself to be a strongly emotional kind of person. Of course I get sad, and things make me happy but I usually feel like I ride a sort of level state of being one way or the other. When I was pregnant, hormones changed that for me and I am not entirely sure it’s ever gone back to normal since. It’s so easy to have moments where I feel so suddenly, and strongly, one way or another and sometimes I don’t entirely know how to cope with those swings. Our trips to Gillette, and thinking what a pain it was to have to do that, reminded me of another time that I was truly fortunate and didn’t really consider myself so at the time.

When I talk about being close to Sanford Hospital, it might undersell it a little. It takes five minutes to get from inside my apartment, to inside the elevator. That includes two stop signs and parking. While my son was in the NICU for three weeks, he was only a very short drive away. At the time, it still felt too far. We could watch our baby on a webcam that they had hooked up for us, but I would still wake up in the middle of the night desperate to hold him and there were so many times I nearly got out of bed and went to do just that. My husband and I admitted rather guiltily to one another at lunch one day, as we were watching another couple with an infant in a car seat, that seeing anyone else out and about with their baby made us angry. Instead of my usual reaction of cooing at seeing a tiny little person, I was fiercely and irrationally furious that they were out doing normal people things, with their normal little child, while mine was out of my hands literally and figuratively.

I know that I couldn’t help my reactions, and those unwanted thoughts, but rather immediately after recognizing I was having them I felt so guilty. My baby might have been in the hospital and not in my arms, my baby might have arrived with extra challenges that I wasn’t prepared for, but he was alive and close. Doug and I actually thought we might have been intruding on the NICU staff by spending so much time there, because we never saw any other parents. The truth was, however, those other parents weren’t five minutes away. They were, in many cases, four hours away. They couldn’t drop what they were doing when the mood struck and go see their child. They didn’t get to tuck their baby in and read him a story every night, and be there every morning to speak with the doctors and hear about the day’s progress. I keenly felt my heartbreaking for those other parents, and for the people in my life that have lost their sweet babies. What right did I have to be so angry and sad over any perceived loss of potential, when the truth is that Conner has so much.

He’s already a blessing, as so many people told me that he would be. I love taking him places, not just because it gets me out of the house, but because his little smile is contagious and I get to see other people light up around him. His potential for love, and bringing joy to everyone around him is immeasurable. I know I definitely can’t meter how much he brings myself and his father. All those little bumps, and knocks and stress are absolutely worth it in the long run, and I’m so excited to see where we get to go from here, not where we haveto go.

Just. Hopefully it doesn’t involve anymore naked men in the streets of St. Paul.