Tag Archives: CHD

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

HOME. And My Musings on Down syndrome

It was a day just like any other in the NICU, when the neonatologist turned to me during rounds and asked, “So do you want to take her home today?” Um, YES.

I called Scott in a panic, telling him Reggie was finally coming home TODAY, and he needed to come to the hospital so that we can pack up all of her stuff. I had to rush out to a special compounding pharmacy to get her heart medication filled, and when I returned the nurses had everything ready for her to bust out of the joint.

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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

Joy

I feel like I have been remiss in my posts lately, because too many people have told me they have made them cry. As Christians, we are supposed to be a joyful people, so hopefully this post will seem more joyful. I will give it the old college try.  I really don’t want this blog to become a bummer, because we are even supposed to bear our sufferings joyfully. So mea culpa, I will try and do better. Unless you all were crying happy tears, in which case, carry on!

My OB called me yesterday with the results of the blood test. As I had expected, she told me the test results were positive for Trisomy 21, more commonly known as Down Syndrome. I know this is the part where I am supposed to say I cried and heard the news with a heavy heart, but the truth is, I didn’t. I just didn’t. I was relieved that it wasn’t a terminal diagnosis, and I felt grateful to know this information early so that Scott and I can go ahead and prepare. When I told Scott the news, he took it the same way that I did. Her little heart is what is first and foremost on our minds, and really the DS seems pretty trivial in comparison. There are plenty of resources and support out there for children with DS, and we know plenty of wonderful families with children with DS personally. So, I know this may sound strange to some people, but we really didn’t grieve the test results. 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

Quick Update on Wren’s Heart

Some background on Wren’s heart situation Here, in case you missed it.

The pediatric cardiologist recommended that we take Wren in for EKGs and echocardiograms every six months due to the severity of her heart defect that was discovered at her birth, but not properly diagnosed until she was about six months old. So we have been dutifully taking her every six months and holding our breath as to how the stenosis (narrowing) of her pulmonary artery is faring as she grows.

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Clutching my old doll I had growing up whose eyes would appear open or closed if you put warm or cold water on them. Anyone else had one of these growing up?  read more

Wrens make prey where eagles dare not perch

So says the Swan of Avon.  I say, an apt expression for a post on our little Wren.

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Does that photo progression make anyone else weepy? Just me? Ok.

We have Wren’s next heart appointment next month, and those always make me nervous. We have gotten results anywhere from open heart surgery is possibly imminent to her heart looks great and we won’t need to check it as often maybe in the many, many pediatric cardiologist appointments we have had. We got the latter opinion last time, and I am hoping and praying that trend continues. read more

The Weight of Worry

My mom always says you are only as happy as your least happy child. I would like to add that you also worry for your children way more than they could ever worry about themselves. I know that worrying is life sucking and counter productive, but I have been struggling with it a lot lately.

Before I had children, not much weighed on my mind. Nothing really caused me to have crippling anxiety. Not even trying to get through law school and pass the bar. Once I started having children, I have become a huge bundle of nerves. read more