Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Tuesday, January 1, 2013

A REALLY happy new year!!

So far, 2013 is a kick a$$ year! Pardon my language, but I think you may just agree in a moment.

I went home a bit early last night to spend some time with the kids and get some rest. It was a great decision as Colton almost acknowledged me for 10 minutes and snuggled me. I got to ring in 11:00 pm new year with miss Kate and I got some things organized. A productive evening indeed!

When I got to the hospital this morning I was pleasantly surprised to see Owen in a crib!! That means he is keeping up his temperature and no longer in need of the warmer. Another step closer to home!

He did a great job with bottles last night and has done great this morning too. He is getting closer to ad lib feedings, which mean he gets to eat when he wants, what he wants. Another step closer to home!


When the docs rounded, he took off his oxygen to see how he handled it. His pulse ox stats went a bit lower than he liked, so he still needs the oxygen support a bit longer to help his pulmonary hypertension. They turned it down pretty low, .1 flow, and he is doing great still! They said it could take a week or 2 for this to remedy itself, which can be related to the DS, but that was NO REASON to keep him here. So...

It looks like as long as he keeps maintaining everything else, he could come home in a day or two on oxygen!!! This would be such a great blessing for our family to be together. Being that today is a holiday, the home health care is not available to hook us up with the oxygen support until at least tomorrow, so we pray that we get the ok tomorrow and get to bring him home tomorrow night or Thursday. YAY!!!

As I sit and type this, my emotions are finally begin to take more hold. You know how when faced with something you sometimes just push through and then it hits you?? Today is that day.

I look at Owen and think back over the journey since his diagnosis and just want to drop to my knees at all the good news we have received. There could have been so much that clouded his arrival. There could have been ago many issues that have arisen.

Could is my new dirty word.

I knew this adventure would be a great learning experience for me and I am realizing this might be the greatest gift to date: I need to worry less and trust more.

I have had reminders to do this for years from those close to me (that may even live with and be married to me) for years, but I think it must be like anything else, until you recognize it yourself, you cannot do anything about it.

My name is Jen and I am a worrier.

I worry about things that I have control over. I worry about things I have no control over. I worry about things that could happen. I worry about things that may never happen, or even be possible.

I *think* that could possibly be stealing some of the joy out of my life. (duh, ya think?)

I do not like resolutions. I never keep them. But this may be different this year. It is more high stakes than any other resolution AND it could positively impact those most important to me.

I will live in the moment and prepare for what I need to prepare for, but I will do so in a realistic manner. I will not allow things to consume me. I will live for the joy. I will trust that the plan for me and my family is in good hands. I will keep perspective.

Yikes. That last one is a bit dangerous. I will need help with that. I am sure someone at home will be happy to hear that they are getting permission to hold me accountable to that one for myself.

2013 will be a powerful year for our family and I can't wait for us all to be together in our little house and start living it together. Praying that will be sooner than later!

Many thanks to those who have offered kind words and support over this time. All of the people in my life that I thought I could count on have proved themselves and more. We are overcome with the love and support and I hope to be able to repay favors and kindness soon.

I know we are just embarking on this next part of the journey and it will not always be easy, but I will keep my eye on the ball, perspective on reality and hope and faith that the plan set before us is well worth the journey and our blessings will continue to be great.

Love to you all and best wishes for an amazing 2013!

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