Tag Archives: T21

Open Heart Surgery Telenovela, Part II

If you missed Part I, you may peruse it here

We arrived back in the CSU, empty handed and in a daze. We packed up our bags since Regina would go straight to the CICU after surgery and since we couldn’t stay with her we would have to check into our hotel. I went to the lactation room to pump while Scott went to the surgical waiting room with his laptop to attempt to get some work done. When I finished pumping, I headed to the surgical waiting room myself. Now, some of the best advice a fellow heart mama, Blair, gave me was to have a good support system of people we love and trust in the waiting room with us. The surgery was going to be 6-8 hours, and that is an agonizing length of time to wait. Reggie’s godmother, Sarawas there with my sweet goddaughter baby Scottie. My parents managed to sneak away from work and from the girls and stay with us for a while. My sister, Rachel, and my brother-in-law, Thomas, also managed to make it. One of my best friends, Christy, stopped by with her mom, who is also good friends with my mom. As is their wont, they came toting lots of goodies for me and Reggie. They also came toting Christy’s adorable baby, Mary. My friend, Leslie, called me the day before and told me she felt called to come all the way from Texas, but wanted to make sure that was alright with me. I told her to come on. read more

Open Heart Surgery Telenovela, Part I

I was hoping to write this while it was more crisp in my mind, but after six weeks of ER visits, hospitalizations, and having to be constantly on the ready to catch vomit and stop her from choking on it, here we are. Six weeks post op and I finally have a chance to sit down and catch my breath. And I thought heart failure was brutal! It was nothing compared to post open heart surgery, my friends. But I seem to be starting this post in medias res. Let us rewind a bit, shall we?

As you might have seen in my previous post, Regina was scheduled to have her open heart surgery on May 26th. As I predicted, we didn’t make it until that date. The week of May 8th, she started deteriorating rapidly. She was constantly throwing up, she had a distinct pallor, she was struggling to breathe, and when we went to her cardiologist appointment on Friday, her oxygen saturations were low and she had gained a pound. My mom and I sat in the exam room waiting for the cardiologist to come talk to us, looking at my pitiful child. I knew that the news was not going to be good. Dr. McKane, our cardiologist, came in shaking her head and sighing. “Oh, Regina, Regina,” she said. “Her oxygen saturations are very low. She gained a pound, but judging from her breathing, I’m guessing that extra pound is all fluid in her lungs. I have maxed her out on diuretics that you can safely give her at home. I’m really sorry, but I’m recommending that we admit her to the hospital this weekend so that they can try and dry out her lungs with IV diuretics while monitoring her electrolytes and go ahead and schedule her surgery for first thing Monday morning. I know that is not what you were picturing for your Mother’s Day weekend. I’m so sorry!” read more

The Thrill Ride that is the last few weeks of a Down syndrome pregnancy

I’ll be 36 weeks soon, and with my other pregnancies, that was about the time I started thinking of the baby as a more concrete than abstract concept, but still didn’t do much to prepare. What an eye-opener this pregnancy has been. For the last two weeks with this pregnancy, the medical routine has been drastically different. At 34 weeks, I started having weekly non stress tests (“NSTs”) at my OB’s office and biophysical profiles (“BPPs”) at my high risk OB’s office. Basically, I spend most of my week in a doctor’s office, trying hard not to fall asleep. It’s amazing how when you’re used to running around all day, if you change abruptly to sitting around all day you can’t seem to keep your eyes open. I feel like the resident octogenarian. The nurses are all, “So how many weeks are you-aaaaaand she’s asleep again.” read more

Meeting with the Heart Surgeon/Visit to the CICU

Heyyyyyyyy. Long time no blog. Things have been more or less the same, other than me having a couple break-downs and finally acknowledging to myself that I’m going to have to get some help. Having 2-3 doctors’ appointments a week and having to constantly find care for the girls while I attend the doctors’ appointments proved to be too great a strain. Seeing doctors for this baby girl is starting to seem like a full time job!  So, finding and interviewing potential nannies it is. read more

Pondering all these things in my heart

I’m trying to decide whether it would have been better to be oblivious about Regina’s diagnoses until her birth, or have it the way it played out and fret about everything for 19-ish weeks. I guess this way is better. It might be more overwhelming to have all this dropped on our heads like a ton of bricks on the day of her delivery. I don’t know.

I have responded to the overwhelming feelings of anxiety for her by researching everything I can and joining every group that I find. Which, on the surface, sounds constructive, right? Instead of sitting around worrying, I can get up and do something! But, it hasn’t really proved helpful in practice. Turns out, Down syndrome has such a ridiculously wide spectrum of outcomes, it is impossible to predict where she will fall. Some are born perfectly healthy and can go home immediately, some have mild health issues and need a little time in the NICU, some have several serious health issues and spend months in the NICU. Some are born late, some are premature, some are born right near the due date. There is a higher risk of stillbirth and miscarriage. Some breastfeed straight out of the womb with no problems, some need help figuring out how to breastfeed, some take months to figure out how to breastfeed, some can never breastfeed, some need feeding tubes. I guess you get the idea of why I’m tearing my hair out. How can I possibly prepare with pretty much everything being up in the air?!! read more