My post this week is going to be a little disjointed as I’ve had two prominent thoughts on my mind this week. Of the many lessons Regan has taught me, I’d say maybe the biggest, all-encompassing one is patience. I consider myself to be a not-very-patient person. Maybe the construction industry didn’t do much to help this, but I can’t say I can blame only that. I get impatient in the simplest situations – at the grocery store, the pharmacy, the doctor’s office, the post office, Babies R Us ( <- the worst culprit of them all) – basically anywhere that things don’t go smoothly and I have to wait on someone else or there is some kind of issue with the errand I’m requesting.
I’m not sure how this happened, but it seems the clouds parted after we had Regan. I feel like I stumbled on the pot of gold at the end of the rainbow because suddenly, everything fell into place. It made me realize that sometimes I am on the receiving end of someone else’s patience. I certainly am not always “on my game”, and let me tell you, navigating Down syndrome and a congenital heart defect is no easy task. My “science” credit at A&M was botany and I took it at Blinn. [For those who don’t know, Blinn is the community college that also serves lazy A&M students] I’d love to say I breezed through the course, but I majorly struggled and now you know why I didn’t do anything in the medical field for my profession. I should also note that the only other science-ish class I took was Psychology, and I got a C. “C” is for “C” ya later, science. With that said, understanding all the diagnosis-related science is difficult, and I study it as if I’m in class all over again.
The reason I say it feels like we found the pot of gold is because our team of doctors, pharmacists, and social workers has been nothing short of spectacular. I mentioned in a previous post how much we love our local Cardiologist, and I truly can’t express this enough. She has been patient beyond belief with us. She gave me her personal cell phone number (have you EVER heard of a doctor doing this? Me neither.), and she answers my questions at the ready without batting an eye. She personally texted me on the day of Regan’s surgery to ask how everything went and how I was feeling. Our pediatrician is no different – she and our Cardiologist are friends and she has called me on a Saturday to give me bloodwork results over the phone with adjusted instructions based on those results. Their treatment of Regan feels like a team effort and they’re letting me be the team captain even though I’m arguably the least experienced among them. Our pharmacists have gone above and beyond, contacting our insurances (yes, plural) to confirm coverages. We have met with probably a dozen social workers to make sure we are set up with Early Intervention, and to help with anything else we need. The social worker at our pediatrician’s office coordinated everything with the medical supply company to make sure Regan had all the supplies needed for her feeding tube. It took several phone calls and multiple shipments to get the correct supplies, and I can’t even tell you what a blessing it was to not have to be the one to make all those phone calls. She also helped us get set up with Medicaid and cleared up the VERY CONFUSING paperwork I received once we had it arranged. Needless to say, it literally takes a village and I’ve been on the very fortunate receiving end of the patience of said village. I’ve said “thank you” more times than I can count the past four months, but I think the best way to show my thanks it to pay it forward with my personal acts of patience.
The other major time I was taught my Regan to have patience is when she was in the NICU. I learned so many lessons while there, but the biggest one was patience. It’s hard to explain how it feels to have your baby in the NICU, but I’m going to do my best here. Maybe the one benefit I had was that we knew Regan would be in the NICU after I delivered. The downfall was the prediction was a 4-7 day stay in the NICU; obviously, no one could predict that I would deliver at 36 weeks. In hindsight, it’s obvious that delivering early would extend her time in the NICU, but being in the fog of postpartum didn’t help to see that clearly. I had just delivered Regan and was in that blissful state for the subsequent 48ish hours while I was still at CHOP myself. Regan got admitted to the NICU and I was discharged from the delivery unit about 48 hours after I delivered. Here’s where the hard part begins. So your baby is in the NICU and you’ve just delivered and don’t quite know what to do with yourself. It’s an unnatural feeling to be separated from your baby, even as a first-time mom. You feel the need to be by her side 24/7, but it’s both physically impossible to do that and physically exhausting to try. The hospital has sleep rooms, but the best word to describe them would be “sterile.” There’s literally only one bed and one chair in the room: imagine an even-smaller version of a college dorm room. The nurses are feeding your baby on a strict schedule and you’re desperately trying to be there for as many feed sessions as possible. You start to feel like your baby will know the nurses better than she knows you and that is both a devastating and terrifying thought, even if it is absurd. There are some nurses who give you the reigns when you’re there, and some who are so “by the book” that it leaves you feeling like they know what’s best for your baby more than you, making you question your confidence is a mom, which is already waning from this whole ordeal. You have this great urge to fix everything but you’re completely powerless through the whole process. It’s the first time you’re forced put all your faith into complete strangers, even though every bit of your logical brain knows their completely qualified for the job. There were days I wanted to take Regan and run home, and days when I felt like she was certainly in the right place (see: SVT episodes). It’s true when I’ve said Regan’s already taught me much more than I’ve taught her. There will be more times in her life when I need to lean on the professionals and it’s not easy, but she’s teaching me how to have patience. I’m certainly not the first mom to go through all of this, and I won’t be the last. In each situation, I think each mom would say they learned a new world of motherhood, completely led by her child.
One of the doctors said something that I’ve repeated many times – “Regan is writing the book and we are the ones reading it.” He meant it in a medical sense, but I think it’s a bit of an umbrella statement for Regan’s life. Every day we’re turning the page, patiently waiting for the beginning of the next.
