Day 13 & 14: Frustration, Sleep and Ice Cream

Sorry guys, I’ve been a bad blogging mommy! Honestly I’ve had a bad case of laziness, thats my only excuse 😛

The last couple days have basically stayed the same. We are still waiting around waiting for the chyle drainage to slow down. Yesterday it drained 9mL (YAY!!!) and today thus far we have about 7mL (still have another 10 hours to go). Fingers crossed that disgusting formula and the meds are doing the trick! As long as the chyle drainage can stay below 10mL within a 24 hr period for a couple of days then we can get that chest tube out. Which means, GO HOME!!

photo 1

 

(Star fish baby!!)

The last 2 nights Jaxson has got a night pass and all 3 of us have been sleeping in the peace and quite of Ronald McDonald House! It has been SO nice to get a restful (as restful as having a 3 month old gets) nights sleep. So every morning we come back to the hospital in time for the doctors to make their rounds, and then we are off again.

Jaxson had another echocardiogram and bloodwork done yesterday. Everything remains unchanged.

Today we took out his NG tube and changed it (his mommas did it all on their own!) It’s so strange to not see anything taped to his face!

photo 5

A nurse from the Down Syndrome Clinic (I don’t actually remember what it was called) here at UAH popped by yesterday. She brought us a huge package of information that new parents of babies with DS receive.

photo 4

What a great resource!! I briefly flipped through the book, and so far it looks like it has a lot of useful information! As you know these special little ones develop at their own pace, so reading books and material about baby development of ‘typical’ kiddos will do you no good. The book that was included in the package takes you through the growth and development of these kids into their teenage years.

photo 3

Right now we are at the hospital to quickly grab his formula and meds for the night. Then we are headed back to RMH (and probably get a dipped cone on the way :P) to watch a movie and hit the hay. Tomorrow I plan on taking a whole bunch of pics of RMH and writing a blog all about it. I feel like a tiny little blurb in a post would do no justice for this place!

photo 2

 

(she always complains that he never sleeps on her chest, so I took photo evidence)

Well hope everyone has a good night, and I promise to be more on the ball with the updates. I feel like we are making so slow of progress right now that theres not too much to report. But I know everyone still wants to see pictures of the cutest little pickle out there!

Night

 

4 thoughts on “Day 13 & 14: Frustration, Sleep and Ice Cream

  1. Your son is beautiful! There is a young lady who lives close to me with DS who is truly an inspiration and I thought you might be interested in connecting with her, her story is about her amazing abilities and shows where you can go if you shoot for the moon! http://www.hugginzbyangel.com.
    😊

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  2. Hi Guys

    I just wanted to say what a great job you are doing with Jax. I know he has all the medical support he needs but mums are the intangible element above all else.

    I am off to Belize for a couple of weeks and I just wanted to touch base with you all to know you will be in my thoughts during thattime.

    Hoping all continues positively and I’m betting you will be home before you know it.

    Take care and I hope to see you when I get back.

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  3. Hi Alex and Holly,talking to Bob last nite and heard the latest,our prayers are with you. Love Grandma and Grandpa hugs and kisses to our little Angel

    From: Down With Jax HI: Thursday, July 24, 2014 10:50 PM To: f.jack@rogers.com Subject: [New post] Day 13 & 14: Frustration, Sleep and Ice Cream

    holigram posted: “Sorry guys, I’ve been a bad blogging mommy! Honestly I’ve had a bad case of laziness, thats my only excuse 😛 The last couple days have basically stayed the same. We are still waiting around waiting for the chyle drainage to slow down. Yesterday it dra”

    Like

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