My Unexpected Little Blessing

The surprise of a baby with Down syndrome – the story begins at the bottom of this page.

Regan’s Birth

on September 18, 2012

On June 14th, 2012 our beautiful Regan Alexis was born. She weighed 6lb. 15oz, and was 20 inches long. This was the most amazing moment in the lives of my husband, Todd, and I. We were so ridiculously excited to meet our new daughter! And she was absolutely perfect! A couple of hours after she was born we had a little bit of a scare. Regan turned a little blue, and felt cold. We asked some nurses to come in and check on her, and they came running into the room. She was struggling to breathe, and the nurses thought they heard a heart murmur. They took her to a transition area to monitor her, and a couple of hours later, she had another episode with her breathing. At this point they sent her to the NICU (Neonatal Intensive Care Unit). I was then able to go see her, and was so saddened by what I saw. Little Regan was hooked up to every machine thinkable. She had a feeding tube in her mouth, oxygen in her nose, an IV in her head, a heart monitor on her chest, and was under a heat lamp to help regulate her body temperature. It was difficult to see her like that, but I was happy to be there with her so she wasn’t alone. I asked the nurse, “So what are we looking at here?”. And then came the words that would forever change our life. The nurse said, “Your baby may have Down syndrome.”.

Our whole world went a little numb. As a new parent, you never imagine that you are going to hear something like that. Especially not after only a few hours of having your child. I felt lost and confused, and had no idea what to think. And in all honesty, we really didn’t have much time to think, because there was test after test to be performed, and so we tried to focus on getting Regan off all those machines, so we could take her home. It could be a week or two before we would know for sure what the genetic test would show. So we held out hope.

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The first bit of good news came in within the next hour or so. They sent Regan to have an echocardiagram to check on her heart – and thankfully – no heart defect. Whew…. a little weight off the shoulders. The next day she was regulating her own body temperature and was off the heat lamp. The day after that – no more oxygen. So we asked the nurse if they could take out the feeding tube and let us try to feed her with a bottle. She got the go ahead from the doctor, but they told us not to expect much. (This is likely because they suspected DS (Down syndrome) and that most babies with DS have trouble feeding.) Well…..little Regan sucked that first bottle down like a little champ! We were so proud! And she had no problem with every bottle following and did not have to go back on the feeding tube. More bullets dodged! She is doing so well, that on the 4th day the only things left are phototherapy to treat her jaundice, and the need to keep her on her antibiotics for a few more days just to make sure she didn’t have any kind of infection. And…she didn’t. So our little girl was coming home on day 6! Sooooo excited there really are not words!

But…..there still was that pesky genetics test that they reminded us about daily, often several times a day when a new nurse or doctor came on shift. (We got really tired of hearing, “You know your baby might have DS right?”.) YES, we know……you guys have told us like a million times, can we just enjoy our little angel, and be happy that she is doing so well and is healthy. Oh and by the way, she is doing so well that you are letting us take her home. Or, do we have to remind YOU of that! Sorry…..a little bitter about all that! Stay tuned, more to come…..

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2 responses to “Regan’s Birth

  1. kzimola says:

    I sit here on a Saturday night, after watching a few inspiring programs on TV, googling the internet for more wonderful stories. I am a registered nurse who thrives on”real life”, “that’s what life is all about” stories. During my years as a student nurse, I spent some time at the Alberta Children’s Hospital and had the privilege of meeting several children with Down Syndrome. I can’t tell you how many times I commented to my mom that those children were the most accepting, loveable children I had ever met.

    I’m also a mom. I read your blog entry, “Regan’s birth”. She is absolutely gorgeous! I was moved to tears of sadness and frustration, however, to read that you felt so bitter that the doctors and nurses reminded you daily that your beautiful daughter might have Down Syndrome.

    Please, please, please know that the LAST thing nurses and doctors want for you and your new family is to cause hurt. The kicker is that often, new moms and dads need to hear things a multitude of times for reality to sink in. Our job is to make sure family is crystal clear with the patient’s (and in your case, baby’s) care plan. There have been many instances where the parent’s just aren’t ready to hear what is happening in reality, with good reason!

    I wish you the absolute best. Your daughter is a beautiful girl with the luckiest parents in the world!

    • brandy51980 says:

      Thank you for reading. Ultimately, after you have waited 9 long, (in my case, miserable, as I was constantly sick) months to meet your child, the last thing you truly want is for a diagnosis to be pushed down your throat. I mean that kindly, no disrespect to anyone in the profession. Honestly we just wanted to enjoy our baby girl. We had plenty of days ahead to learn about the Down syndrome, and figure out what to do to help her. It was very frustrating that everyone felt they needed to convince us of it. No parent, in my opinion, at that moment in time, wants to deal with that. I truly wish everyone could have just let us enjoy our little girl, especially while we waited for her to be able to go home from the NICU. Just thought it was worth mentioning the point of view from the other side.

      Thanks for the kind words about our daughter. She is amazing. 🙂

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