Tag Archives: open heart surgery

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 Dates that Leave Imprints in our Minds

August 26th, 2016. The day that we had our 20 week scan and the perinatologist broke the news to us that something was seriously wrong with our baby’s heart.

January 20, 2017. The day that Regina was finally discharged from the NICU, after 24 long days. She was not feeding by mouth at all.

Last Friday, the scheduler called from the children’s hospital to schedule Regina’s open heart surgery. We scheduled it for May 26, but that could change based on whether an emergency or a heart transplant pops up, or (God forbid) if Regina gets sick. I have no doubt in my mind that whatever date her open heart surgery ends up being, it will be a date etched in my mind forever. 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

A Name and a Diagnosis

First of all, thank you all so much for the overwhelming support and encouragement we have received after my last post. I get by with a little (A LOT OF) help from my friends. I am so honored and grateful that baby girl and we were benefitting from so many prayers.

Second of all, we decided on a name! We have never decided on a name this quickly and easily before. We usually agonize over it until practically the delivery. But I suggested to Scott one name for her, and Scott suggested the other, and we both loved each other’s suggestions. We will still be following our family tradition of calling her by her middle name, and her middle name is Regina. She is named after the Queen of Heaven, and I have dedicated her to Our Lady. Scott and I decided that her first name will be Matilde, named after my mother and grandmother. Matilde means “brave in battle,” so it seemed appropriate. It is good to have a name so that I can start praying for her by name. read more