Before I start, thanks again. The outpouring of love and support is still overwhelming us and is fabulous, so thank you all.

Also, soon I’ll do a little re-cap of how our little guy came to us so soon. It was a remarkable story and it’ll make for a good read.

So, we’ve now been home for one full week. It’s been a great week filled with visitors, lots of food, lots of snuggling and lots of pooping, etc ;-)  We are so happy to be home and settled in and we are adjusting to being a foursome now, which hasn’t been too difficult. Parker is pretty mellow, as is to be expected for someone who is still negative 3 weeks old. Liddy is doing great as a big sister, but is experiencing some typical spells of acting out a bit to get some attention. She’s also just a really energetic little kid, so I think she isn’t threatened by Parker as much as she’s just feeling the effects of having to wait her turn or hold tight until mom’s done feeding or whatever may be preoccupying us as parents.

In our first week, we had some important milestones for our family. Most importantly, we all went to lunch at our favorite restaurant. That made us feel very normal again. It was settling and, of course, delicious!

Lunch @ Ciatti's!

Lunch @ Ciatti’s!

On Wednesday of last week, we had our first pediatrician appointment for Parker, who was a trooper. He’d gained an inch of height and his weight was a wee bit lower than when we left the hospital, but that’s more a symptom of having not eaten in awhile and having just pooped. As a safety precaution, they sent us home with a scale to monitor his weight, which has steadily risen, so that’s a great thing.

Parker’s bilirubin, the chemical in the blood cells that causes jaundice, was elevated again. On wednesday, they decided to send us home with a Bili-bed, a phototherapy device that looks like a flatbed document scanner which Parker got to lay on to help bring his bilirubin level down. On friday, we returned to the lab for another test on it and it had gone down significantly, so we were given the “all-clear” to discontinue the use of the Bili-bed.  His color seems better and I think we may finally be clear of any worry there, but you never know, so we’ll keep an eye on things.

Otherwise, he is looking really good. He is still small and most visitors’ reaction to their first meeting with Parker is how small he is, but I think it’s just one of those things unless you’ve been around a newborn. He’s not really all that much smaller than other newborns, but in 3 weeks when he is full term, I bet he’ll seem like a big baby…one that would have been a lot of pain to push out ;-)

This week, we are going to attempt some normalcy. Chelle and Liddy wanted to go to class today, but I think the daylight savings time thing may have made them late due to some later sleep schedules. Regardless, they have plans to do the normal school routine, some gymnastics, story hours, etc. There was (and maybe is) still some concern about going out in public with Parker due to his immune system still being a little fragile, as is common with premies, so we’ll be smart.

It’s feeling good to be able to have that normalcy. The weather here in MN, which has been remarkably cold and snowy this year – historic even – has tamed to almost pleasant and much of the mountainous snowbanks surrounding the town has melted and looks to continue to do so. I am sensing this is the start of Spring because my allergies are making my life miserable.  However, I’ll take this misery if it means I get to play outside in the yard with the kids sooner.

Now here are some pictures of the adorable little fellow.

-CH

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So a couple days ago over my lunch break, I wrote something about our experience bringing Parker into our world. It was meant to reach our immediate network of friends to tell them about Parker and hopefully avoid some awkward moments in the future and, honestly, to save us from having to tell the same story hundreds of times over. Also, and one of the things I learned from the “So You’re Having a Baby with Down Syndrome” welcome kit, we wanted to control the message and writing it down with facts and info so no one could speculate or make assumptions was highly recommended. So, that’s what I did.

Well, that was the intention, but what happened blew my mind in about every way possible.

As expected, our friends saw it and read it. Many “Like”d the Facebook post and several made heartfelt and thoughtful comments. What we didn’t expect was the number of people who would share it and repost it and pass it on to friends. It blew up all over the place and didn’t stop for more than two straight days. It led to dozens of new friends and we got dozens of emails from people all over the country. Crazy!

At last check, the story was read nearly 25,000 times…yeah that’s 25 THOUSAND. Insane. I lost track of the Likes because between the original post and the shares, it had over 2000 and about 1800 of those were people I am not friends with. While I did recognize and ultimately reconnect with many of those people, the vast majority of those people were complete strangers.

I’ve been at a loss for words in trying to explain the overwhelming feeling of appreciation and love. It’s weird and wonderful to have someone from some completely different part of the country who is friend of a friend of a friend write you an amazing and uplifting email of support and appreciation. It’s humbling and also kinda makes you feel like you aren’t worthy, honestly. We’d like to think we are doing whatever any other parents would do in our situation, but we know the unfortunate reality is that it’s not always the case.

With no way to really pay back the love and support, I’ll just say a simple thank you to you all. I am glad our story touched so many of you and I’m also glad it’s been something to bring a lot of people together and, more importantly, got a lotta people on board this journey with us. For so many this will be their first experience with DS, as it is ours, and it should be so exciting to get to experience Parker with our whole village of supporters following along and involved.

For those of you who’ve emailed and messaged – I’ve tried to to respond to some of you and will continue to respond til I hopefully catch up… There were literally 100+ messages to respond to, so bear with me :-)

Love to you all and can’t wait to keep you all updated on Parker as he keeps being adorable and amazing.

Cheers!

-CH

I know it’s been several days since my last post and many of you who follow, and certainly those that don’t keep up on facebook (which has it’s fair share of updates) are wanting some updates. Well, the most important update is that we are finally home! 12 long days in the NICU, but we made it through and the little guy is home where he belongs.

In the days ahead, I’ll tell you all about the birth and the first couple weeks. In the meantime, while most of you know most of the story, feel free to take a read of a little story I wrote to share with the many friends in our lives who didn’t know about Parker’s Down Syndrome. I posted it to facebook a little after lunchtime after talking to Michelle. We wanted to be able to tell people, but not necessarily fully in their face, but wanted to tell the whole story so they understood more than just the simple fact that we have a child with DS.

Cute little fella, ain't he?

Cute little fella, ain’t he?

Please click here if you’d like to read the story.

Check back soon for much more and thanks again for following along!

-CH