Seattle, WA, USA

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update 3/17/17: cha-cha-cha-changes

March 17, 2017

 

The past two weeks have proven to Morgan and I that change isn't always a bad thing. A lot has happened so take a deep breath and let's dive into it.

 

That'll do.

 

previous weight: 5.58 Kgs

current weight: 5.80 Kgs

gain of .22 Kgs or 220 grams

 

 

 

Hudson gained almost 16 grams per day over the past 2 weeks (reminder: the required weight gain is 15-20 grams per day). Although we have had higher averages in the past, this is still good. Hudson had around 4 days of throwing up (we were finally able to discover the throwing up was caused by us changing the feeding tube to the right nostril so we quickly moved it back to his left ) so we will take whatever gain we can, we don't discriminate. 

 

up the ante.

 

The doctors would like to take advantage of Hudson's current health and continue to push Hudson to gain weight 'naturally' - this means they want to increase his caloric intake while also encouraging him to practice eating by bottle. To do this, we are switching up our feeding routine. Up until today, Hudson has had an ounce (30 mL's) of formula pumped into his stomach every hour for 23 hours a day. We are switching to pumping 35 mL's an hour for 20 hours a day and giving him two 2-hour breaks. The theory behind this is to have Hudson develop an appetite during that 2 hour break so he can be encouraged to eat from a bottle.

 
then there were 8.

Our current routine has us administering 10 different medicines in the morning and 5 in the evening (as pictured)

 

This week, Hudson's labs revealed that his magnesium levels and INR (blood clotting measurement) were in the healthy range so the doctors were comfortable having us remove 2 medicines from his daily routine. This means we are now at 8 medicines in the morning and 4 in the evening. We get excited for little things like this. 

 
outlook good. 

 

The little magic 8 ball we have tells us that the outlook is good right now and we couldn't agree more. Will he still need a transplant? Of course. However, Hudson has surpassed all expectations and essentially 'bought' more time to get him to the healthiest version of himself.  Having more time to do this  is like winning the lottery - powerball size. 

To put it in perspective, when Hudson went to the hospital in January, the doctors were speaking in terms of weeks for the transplant. As of today, the doctors are speaking in terms of months. As you have seen in these updates, a lot can change in that amount of time so I repeat my previous statement: having more time is like winning the lottery. 

 

all the small things.

Not all the things we communicate warrant a dedicated section so below highlight the little things that have occurred over the past two weeks

 

  • We have seen tremendous improvement in Hudson's physical milestones. He has minimal head wobbling and  for the most part, holds up his head! As he develops core and back strength, he is reaching and grabbing objects more frequently (including our faces and his feeding tube)

  • Now that we are practicing sitting up with Hudson, he hates to lay down! He is embracing this new point of view

  • Hudson is on an accelerated immunization schedule because of this transplant so as of this week, Hudson is at the 9 month old status for completed immunizations (he is 4.5 months)

  • Hudson is almost out of newborn diapers. This is huge because it means he is getting bigger - and so are his messes.​

  • We are this close to getting a real-life laugh. 

 
 final thought.

Each week I hesitate writing a section that thanks all of you for your support and love because I never want our gratitude to lose it's effectiveness or sincerity. The truth of the matter is that we would never be where we are now - both physically and emotionally - without you. Every thought, prayer, meal or gift touches us more than you will know. It is incredibly important to Morgan and I that you all know how grateful we are to each and every one of you. Thank you. 

 

xoxo

Jordan, Morgan and Hudson

 

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