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.”
April 20th, 2014 at 5:44 am
Does Reagan like Owls or Pink bunnies? Anabelle’s friend Skylar has a toddler chair and they just LOVE it! I don’t how to post a pic of it here but I’ll send it on facebook. There is a pic of 3-25lb babies piled in it and it still held them! 🙂 Looks super comfy too.
Fisher-Price Infant to Toddler Rocker Sleeper
If you think she’d like either I would ask the Easter Bunny to get her one! 🙂
April 20th, 2014 at 1:20 pm
Have you tried a nap nanny? They are like a baby recliner but it will hold her for sure. You guys are such amazing parents. I pray God’s guidance will be made clear at each new step/challenge.
April 20th, 2014 at 1:31 pm
My daughter had a feeding tube for 2 yrs and we used a nap nanny as well. It was the easiest way to feed her. Also about night feedings, u can turn that beeping sound off and we extended our feedings to 12 hrs. Just slowed the pump down. Good luck and it seems very very hard now but it will get easier!
April 20th, 2014 at 3:17 pm
At night how long did you slow the feeding down to? Any suggestions from someone who has been down this path are welcome!!
April 20th, 2014 at 2:12 pm
AM. The peg preggo high chairs reclines like a swing. Could that work?
April 20th, 2014 at 3:16 pm
We have the peg perego high chair and it is working. It’s all just so cumbersome and tough to figure out on the fly.
April 20th, 2014 at 2:31 pm
will do….continuing love and prayers…
April 21st, 2014 at 2:51 am
If you need a quick look up on a med that is reliable the epocrates app is good or just call me! Also if you have a problem with the g tube site I can come look! If I can’t figure it out I can ask the surgeon he is so sweet.
April 21st, 2014 at 12:18 pm
Anne-Marie & Rob-
You are doing AMAZING and Reagan is so blessed to have you as her parents! We are praying for you all, as if she were our own daughter!
I would love to send over a home-cooked meal whenever you’re ready…even if its weeks or months from now 🙂 Just give me a shout at firstname.lastname@example.org at any point and I’d be glad to help out however I can.
April 23rd, 2014 at 4:40 pm
Hello! I wanted to reach out and let you know I sent you an email through facebook. It was probably routed to your “other” inbox. Through a friend at church I was led to your blog and have been keeping up and praying with you all the last week or so. We are not far from you and have had a VERY similar journey with our daughter who also has a VERY rare metabolic disease. Gianna turned 2 this past February. We are not that far ahead of you in this journey but far enough that I feel that I can offer some insight or point you to some good resources. Like Reagan, Gianna cannot sit up on her own and can only hold her head up for short periods. I have done a lot of research on seats and such and can definitely help you in that area. We now have a few different seating options in our home as well as a “wheelchair” that looks more like a stroller that supports her completely and allows her to be a big girl when we are out and about. Please don’t hesitate to contact me if I can help in anyway, trust me, I know how precious your time is, if I can save you some heartache it would be a blessing to me as well 😉 We deal with the g tube, neurological issues including seizures, a very strict medical diet (ketogenic), therapies weekly including speech, PT, aquatic OT, several medicines daily including compounded meds and checking blood ketone and glucose levels, many of the same specialty doctors (metabolic geneticist, neurologists, GI, ophthalmologists, ketogenic dietician, a geneticist in Ohio who specializes in her disease), and all the daily struggles of trying to do ‘life’ while caring for a child with complex medical issues. I get it. You are not alone. I update our family and friends through Gianna’s facebook page, Gianna’s Journey. http://www.facebook.com/giannasjourney I have slacked lately because with all thats stated above, there is not a lot of time left in the day to sit and write 🙂 Our family is praying for yours and I hope to connect with you in the future. Romans 12:12 ~Rochelle Bailey
April 24th, 2014 at 9:04 pm
I haven’t even seen Rob since High School and we weren’t tight, but I always appreciated how kind and funny he was. I just found this blog from your fb post and read all of the April posts. I can’t even begin to imagine what this has felt like for your family. I thought a bean bag-type chair might be helpful for feeding Reagan (http://www.baybbrand.com/)? It sounds like you have a pretty incredible support system. I’ll be thinking of you three and earnestly hoping you find all the support and strength you need to adapt to your new life and the challenges it brings <3
April 30th, 2014 at 6:05 pm
Stumbled on this website and your story is so like my friend’s. Different diagnosis but many similarities. Her son developed normally for the first few months and started having seizures and has been diagnosed with a rare genetic disorder which means he has seizures and lots of other problems, he can’t eat / drink so is fed via a gastrostomy. Have you heard of ppods ? That may help with Reagan’s feeding. (Am from the UK but I think you can get ppods in the USA x