Wednesday, June 15, 2011

We're HOME!












A quick post from Kristin:


First, Jason and I apologize for the long, long, long delay in updating the blog. As always, we thank you for keeping us in your thoughts.



Things have been a little crazy since we left the hospital For the first two days that we were home, we had no less than ELEVEN different medication times per day for our little Sam the man, including midnight, 3 am, 4:30 am, and 6 am. In fact, as I sit here typing this blog, the midnight alarm on my phone is reminding me that it's time for Sam's sildenaphil. I'll return in one moment...


Luckily, we have now consolidated his medicine times to 6 am, 9 am, 12 pm, 6 pm, 9 pm, and midnight. And the best news is....we no longer have to give Sam his IV antibiotics! Having to access your son's central line three times a day is stressful, and I'm glad that part is (hopefully) over.


Sam seems to be enjoying the good life at home. Except for a little crankiness due to nasal cannula congestion, he's a pretty happy camper. He made it through his second pediatrician's appointment today without crying, and he enjoyed an outing to our friend's house. Since he didn't really nap much today, just now I was able to give him his meds, carry him upstairs, change his diaper, and reswaddle him without waking him up. He's a cute little guy.



My favorite thing to do now that Sam's home? I like to pick him up in the morning, blanket and all, and cuddle him in the rocking chair before he wakes up. That way, when he opens his eyes, it's not because he's being weighed or poked with needle or having a thermometer stuck in his armpit (all necessary and important things to do in the hopsital, but not the most pleasant way to wake up). Instead, he's in my arms, and as soon as he blinks himself awake, he looks up at me with bright eyes and one of his big, toothless smiles. It's my favorite moment of the day.



Anyways, my brain is sleepy and incapable of deep, meaningful thoughts right now, but I can say that it all boils down this: I don't care if I have to get up every fifteen minutes to adminster some kind of medication to Sam. It's worth all of it and more to have him home.

19 comments:

  1. Beautiful post! I am so happy you are HOME.

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  2. This is fantastic news! I've been thinking about you. I hope you will find a peaceful "new normal" now that you're all home.
    xoxo Anna

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  3. Dear Jason, Kristin, and Sam,

    Today is my son's 31st birthday, and as we celebrate together this evening, we will also raise our glasses in a toast to Sam's homecoming! Thank you for sharing your wonderful news, and I hope we will see you soon! Fondly, Marlys, Dave, Jeff, and Meredith

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  4. So glad to see a wonderfully positive post - worth the wait! Praying for Sam's continued good progress and a smooth transition to the home routine - especially love the wake up routine as I am sure it blesses you both.

    Now may the Lord of peace himself give you peace at all time and in every way. The Lord be with all of you. 2 Thess. 3:16


    NKL

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  5. YAY!!!!!!!!
    -Kendall in Oklahoma

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  6. Hooray! So glad that you're home and establishing a beautiful routine! Nothing like those toothless grins first thing in the morning! Praying for you all!!!

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  7. Tammi T. (mom to an HLHS boy)June 16, 2011 at 4:04 PM

    So good to hear an update and know Sam is home. Wow! We can definitely understand why we didn't hear anything for awhile? Thanks so much for taking the time to post. It is amazing that you were able to fit that in your schedule, at all. Please don't worry about having anything meaningful to say (even though I'd disagree with that statement). The "morning routine" with Sam says A LOT! How much more meaningful can you get?

    We continue to pray for you and your little man.

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  8. Thank you so much for posting! I kept visiting the blog and getting more and more sad that there wasn't any new news! I am so happy that you are home and that Sam is doing well (and as cute as ever). I am thinking of him and you often and I wish you all the best.

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  9. Kristin, Jason, and Sam,
    we love reading the blog and keeping up with everything going on, and we love it even more when there is wonderful news like getting to pick Sam up out of his own crib in the morning! it's wonderful news and we are always thinking of you
    jennie, jonathan, and sydney

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  10. I am so glad that you have made it home! I am reading a book right now on grace and I can't help but thinking how Sam's story is a perfect example. Thanks for keeping us all updated- you and Sam remain in my thoughts and prayers!

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  11. Reading this was a highlight of my day. I think about your family every day, always hoping that you are feeling joy even in the times of stress. You are such great parents and a great example to me and Kristy.

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  12. HOOOOOOOOOORAY!!! Thanks for the update! What joyous excitement! So happy and thrilled and excited and grateful for you all!!! Kiss those little rosy cheeks for us! Angie

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  13. I'm so happy for you! How great that he is home! And he looks sooo adorable!!! *melts*

    Thanks for the update :))

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  14. Although I know I am truly spoiled since I got to see you all on Wednesday, waking up Thursday morning and seeing pics of your cute little one just made my day!

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  15. Thinking of you...at this moment and when I wake up in the morning.

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  16. Sam has the greatest smile...identical to his mom's! I miss you guys. I'm assuming the feeds are going well? Holding strong without the thickener? Your morning routine sounds nice. I know I'd prefer to wake up in a rocking chair to having a piece of paper stuffed under my armpit or a heel poke. Kris, when you get a chance, will you let me know which email you want me to use so that I can send the pics from my camera? I know you're about to lose your school account.

    Also, our CCU is finally separating from our PICU. No promises about how long it will actually take, but can you send the name/email of the recent NP grad? I should have gotten her last name while I was there. I made some contacts and the cards people want her CV. Unfortunately, there's a hiring freeze in the NICU. Anyway, hope you're getting some rest. Love you!

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  17. We are parents of a 9month daughter undergoing the staged surgeries (2 so far). I follow your blog when I can I hope the best for you three! One thing I just want to say is that I am happy to read the lack of references to religion and a higher being in your posts. We find it difficult to talk to other parents with kids such as ours that simply want to end a conversation about "miracle babies" and that a God does these things for a reason. Sorry but these birth defects happen and saying such things doesn't sugar coat the difficulties of being a parent to one nor does it help some parents cope. If that helps you, I am all for it. I just wish that other folks would know that not all parents of such children are religious and I would hope they could respect our views. I surely don't expect you to endorse these comments and don't think you do! Best of luck with everything.

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  18. Okay, so Sam's home and looks like he may be ready to toss horseshoes in 6 weeks! This little guy has thrown so many "ringers" already nothing would surprise me.

    Loved the Father's Day picture of Sam and Jason, but good God what was that mop of hair lying between Jason's legs? Enjoy the summer and keep us "posted" on Sam's progress--Pam

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