Our Life is…

Some days you wake up and everything is the same and by the time you go to sleep nothing is the same. Those are the Big Days. A year ago today was one of those Big Days for us, the biggest of our Big Days, but to get there we have to backtrack just a little…

On June 26th, 2015, Josephine had her first pediatrician appointment. I was nervous going into it because we had realized in the week or two prior that she was not gaining weight like she should be. We were exclusively breastfeeding, something I felt strongly about and really wanted to be successful at, and I was afraid that we would have to start supplementing with formula because of her weight. The day came and she was only in the 2% for weight, but the pediatrician said to continue doing what we were doing (breastfeeding with the shield and giving pumped milk a few times a day). Then she listened to her heart and heard a murmur. She stopped listening to tell us and said, “I think it may just be musical.” and then she listened again, more intently, and said, “Well, with her feeding and growth issues, I’m going to order an echo.” We left, more distracted by the first round of shots and needing to give her Tylenol (her first non-breastmilk ingestion ever!) than by the murmur, but it was there, lurking. I googled heart murmurs, of course, and found this page: http://www.breastfeeding-problems.com/congenital-heart-defect.html I read the symptoms to Josh, “Fatigue or weakness, yes. Poor appetite, no…more like perma-nursing. Sweating while breastfeeding, yes. Fast breathing, yes. Sucking bursts and long rests, yes. Weak suck, yes. Uncoordinated sucking and breathing, yes. Bluish tint, no. Can feel heartbeat just by holding, yes. Heart murmur, yes. Poor weight gain, yes.” That is a lot of yeses. I think we might have known then. But we tried not to think about it too much while waiting for her echo. Maybe we were reading into things too much. Maybe it was nothing.

On June 30th, 2015, Josephine had her echocardiogram. I remember nursing her that morning and pumping while watching Gilmore Girls with N. I remember picking out her tiny little t-shirt with the black bows on it and a pair of black pants because I knew they’d need to take her shirt off for the echo. I picked Josh up from work and we headed to Clear Lake. Josie was a good girl for the test, they had one of those spinning glow lights you get at Disney on Ice or the circus that she really liked to look at. We gave her some pumped milk in a bottle to help her stay still. After it was done, the nurse came in to try and get her blood pressure on each arm and leg, but couldn’t. (The first of many failed blood pressure attempts on this kid.) I think she got two and we called it good enough. Everyone was very nice to us and very sweet with Jo. Maybe they were too sweet, the burden of knowledge being what it is. The smiling tech told us, “You guys are all done. If your pediatrician doesn’t call you within 2 hours, call us.” I’ve been through many, many, many tests with K and no one has ever said this. I knew then. It was a rock in my gut and a hummingbird in my chest. I told Josh, “I don’t think that is a good sign.” We headed back towards his work and stopped at Sonic for lunch. Right as we ordered, my cell phone rang. It was our pediatrician. She said something like, “Hey. Josephine has a large VSD with significant shunting, you guys need to go to the ER at TCH to be admitted to cardiology.” I heard the part about going to the ER and understood that, the rest was a little fuzzy. I think I said, “We just ordered food, can we wait for it to get to the car? Do we have time to go by the house and grab a few things?” She said yes. I think I texted Laura or maybe I called? They were at J’s birthday lunch. I called my mom. I think I called N to have him gather some things for us. I texted Paula at some point, she had K at a movie with M. I’m pretty sure we talked to Josh’s mom. It’s all overshadowed by the rocks and the hummingbirds that had multiplied at the sound of the pediatrician’s voice. I forced myself to eat a little on the drive back, but once that adrenaline is dumping, it is hard to do. We packed up some things at home, talked to N, I texted the pediatrician, “I know we need to go to the ER, but I can’t remember what else you said.” She said, “She has a VSD with significant shunting. They didn’t have a cardiologist at Clear Lake, so she needs to go to the ER because it is the fastest way for her to be seen and she needs to be seen right away. They may keep you, but they may not.” We made hasty arrangements for the kids, grabbed stuff in case we had to stay, and headed to the hospital.

We were taken back pretty quickly from triage, but I barely remember that. We were put in a room on the side that used to be call Fast Track. It was a room I’d cleaned many times as a volunteer, tucking the sheets in on that very bed. I had fetched ice water for parents and brought crayons or toys to the kids. It was the room that N got stitches in once, I think. I can’t remember if we were ever in there with K. Regardless of all the things that had happened there before, it was a different room now. While we waited, I nursed Jo in that little bed that was the same and somehow different now. It was one of the last times I nursed her, but I didn’t know that then.* Someone came and took us to imaging, something I’d done loads of times as a volunteer, and she had her first x-ray. It took them forever to come and get us afterwards and it made me crazy because I knew exactly how to walk us back to our room, but we still had to sit there and wait. Then she her first EKG and she flirted with the tech while he adorned her tiny chest with stickers and cords. She got her first (unsuccessful) non-immunization needle sticks as a nurse tried to start an IV and get labs. At some point, cardiology came to see us and they explained her defect, why nursing was such a full time job for her and why she wasn’t growing in spite of it, why she didn’t turn blue like most people would expect, and the fact that she was in congestive heart failure already and she would need open heart surgery. Maybe this stay, but hopefully not. Hopefully surgery would happen at 6 months old, if we could get her to grow. We were being admitted, but the cardiology floor was full. We’d have to go to 10 instead (which ended up being kind of a mess). At some point, maybe in that room, maybe on the floor, they told me that Josephine shouldn’t nurse anymore. It was too much work for her heart. The thing I had been most afraid of at the pediatrician’s visit had happened, but it barely mattered anymore. I just wanted my baby to live, I’d feed her whatever and however I had to to make that happen. There had been so many little things to worry about on June 29th and so many bigger things to worry about from June 30th on, but it all changed in an instant. It all became a single, silent breath of prayer, “Please, just let me keep her.” in and out, over and over, through heart failure and failure to thrive and open heart surgery and life-threatening allergies and so many sleepless nights and so many days that we never would have imagined before our Big Day. “Please just let us keep her.” was our heartbeat. And here we are, THREE years later, overflowing with gratefulness that she has been ours for 446 days as of June 30th, 2016. 811 days as of June 30th, 2017. 1176 days and counting, as of June 30th 2018!

*****

I first heard this song shortly after Josie’s diagnosis and every time I hear it, I think of these moments. 

(*Side note: I tried to keep up comfort nursing for a short while, but she just wouldn’t grow and I couldn’t let her keep burning extra calories. I tried to get her to nurse after her surgery when it was safe to do so, but she wasn’t interested anymore. I do miss nursing very much and will always be sad that we lost our breastfeeding relationship in the midst of all of this, but we did what we needed to do to give her the best shot at thriving and I can’t regret that. )

Links to other heart-related posts:

https://ourlifewithk.wordpress.com/2015/07/03/josies-heart/

https://ourlifewithk.wordpress.com/2015/07/12/home/

https://ourlifewithk.wordpress.com/2015/08/14/new-normals/

https://ourlifewithk.wordpress.com/2015/11/04/josies-big-surgery/