Rob and I came home with Reagan on Saturday after being in the hospital for 12 days. We needed those 12 days in the hospital and I can honestly say the past two weeks have been the hardest weeks of my entire life. The marriage vows “for better or for worse” are definitely being tested right now. This is THE WORST! I really do hope better days are coming for us and our baby girl.
Saturday when we walked over from the Ronald McDonald House (RMH), Reagan wasn’t in her room again…this time she was actually in a board meeting with the Dr.’s and nurses of the floor…she was brought in there to sit in. Supervise maybe? I don’t know but Rob and I tried to find her and I finally saw her stroller sticking out of a conference room door around a corner and everyone was giving their reports on the patients on the floor and Reagan was following along. I wish I had gotten a picture of that! It brought a smile to our face…we savor the little moments, the tiny smiles, laughs and victories. The nursing and Dr. staff love Reagan and they got to know us pretty well too…it’s heart warming when people take an interest in your child and when they love them well.
The only reason Rob and I didn’t go home on Good Friday is b/c we wanted to go to the CPR class offered across the street at Winnie Palmer hospital for Women and Children. Since Reagan has had three seizures now, we want to make sure we know how to administer CPR if that situation should arise. The extra day also gave us an opportunity to fully care for Reagan, meaning we administered all of her medications, started and stopped the feedings via the pump and feeding tube and learned how to use our pump properly. We also cleaned her surgery site…I almost passed out, so I let Rob know he has to do that. It’s SO much work! And it’s frustrating, we both just long for how things used to be. Fun bedtime routines, fun eating food…everything was fun…and it was getting even more fun before it all just stopped and we regressed months back.
After our CPR class, we packed everything up and headed home. We had Reagan’s medications, the gazillion new stuffed animals Reagan received from all our lovely friends and family who packed our room full of balloons, stuffed animals, toys, flowers, etc. You guys totally rock!
On the way home with Ray Ray in the back seat, the gravity of our new reality started to hit home.
The work involved now is just so much…Rob and I talked about the “what if” scenarios (what if she had a seizure while we were driving…what do we do?). We talked about how her new bedtime routine would look…we talked about where we would put her when feeding her. Would the high chair work? Would the reclining bouncy seat work…the one we put away when she was six months old? Is she too heavy for that? I don’t know…I am doing everything in my power to avoid purchasing something from a medical supply store, but it might be inevitable. So, if anyone out there has ideas on something good to put Reagan in while feeding, something that would hold her long, 25lb frame, let us know. She can’t hold her head up on her own completely, so it’s hard to know what to do. The “snug a bunny” bouncy seat worked, but she’s pretty heavy in it and probably over the max weight limit.
Tonight, was a little bit of a cluster at home on our own. The first time we fed Reagan she did well…we went for a walk and then tried to put her down for a nap, she didn’t want to do that…so we brought her to the family room and she fussed for a while. I think she was tired and also frustrated inside. Her fussiness is magnified to us b/c Rob and I feel like failures so often b/c we have to learn a new system and schedule all over again…it feels like we have to learn all about Reagan again and learn about what her cries mean…everything is just so different.
It took Rob and I 20 minutes just to figure out what medications to give Reagan and how much of each one. She’s now on six medications, some are multiple times a day, some don’t have the same name on the bottle as the sheet of meds that the nurses gave us b/c they are generic…so by process of elimination, we figured out what she needed and when. It was too much for me and I cried into my mommy’s arms. I just wept and I can’t remember the last time I cried to my mom like that. It’s been years I bet…but Rob had to be there for Reagan and I’m glad my mom was there for me. She’s been amazing throughout our whole ordeal and is always there for us and I’m so thankful for her.
Not only is Reagan feeding through her G-tube, but we have to feed her late at night to avoid waking up in the middle of the night and we have no idea how these feedings will go. We have to be so stealthy as to not wake her up, and the stupid machine she has BEEPS so LOUD!! To go from sleeping 12 hours at night, which we worked for 11 months to get up to, to only eight hours and feeding from a tube and machine feels so defeating. But we remind ourselves that this won’t be forever, even though it seems like it sometimes.
On a positive note, we have been completely blown away by everyone’s kindness. Waiting at our house was a gift basket from some people that work in the same complex as Rob. And a gal that I met once or twice a few years ago, who has a mutual friend in common, organized an entire gift basket from women I don’t even know. She had an Easter dress custom made for Reagan…and then the lady who made the dress told me to contact her for a special order. Chocolate covered strawberries were delivered, gift cards for Starbucks, massages, iTunes, books and magazines were all in the basket. Not only that, these women, who I don’t even know, wrote lovely notes and told me I was a good mamma, and said Rob and I were great parents…Rob read them out loud while I was rocking Reagan and I just cried. Knowing that people care, and that people are praying for us…I feel like there are thousands praying and I promise you, we need every single one of those prayers.
As we were driving, Rob said,”People want to help us and I don’t know what to tell them.”
“They can just be our friend,” I said. “Be our friend…be Reagan’s friend, and accept her for who she is and accept us through our struggles. Be our friend.”