Tag Archives: CHD

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.

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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.

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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.

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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? 

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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.

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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.

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