Ruby Hope McKee Starling

This post  mostly for CDH parents.  Again family and friends feel to read.  It might give you a better understanding of what our day to day life is like.  No pictures today.

I looked at our calendar and I realized that we do have a busy week next week.  For some reason I though we had a couple more weeks until  the October check-ups start. I used to be able to go to the grocery store without a list, becasue I could remember everything I needed.  Now I need list for things I need to take to the grocery store with me. 

Ruby's swallow study and chest x-ray are scheduled for Tuesday morning.  Then on Thursday she has her normal therapy appointments and we meet with the GI doctor for the first time. I'm kinda nervous about the x-ray.  I know it's to check and make sure everything is where it should be and that her lungs look good.  It's a reminder of how our days were controlled by how the x-ray and blood gases looked.  Ruby's last BMP was perfectly normal.  Even her white blood cell count which had been on the high end of normal back in July.  Hopefully her chest x-ray will be, too.

We have been playing around with Ruby's feeds a bit.  We are trying to make her hungry.  The need for KCl every 6 hours  makes that tough.  We dropped the volume of her middle of the night feed that is tied with the KCl to help this.  It was going great when we were giving her 3.25 ounces every three hours during the day and then 2.75 ounces at 1 am with her KCl.  We then tried to get the 1am feed down to 2 ounces which is the bare minimum to keepher  tummy happy with the KCl.  That meant increasing the volume of the feeds throughout the day.  We boosted her daytime feeds up 3.5 ounces to make up for the 1am feed. We also wanted to give her a few more calories.  It didn't go well.  She would fuss after each feed and fall asleep.  We brought her back down to 3.25 ounces and she doesn't seem as uncomfortable after each feed.  I'm guessing she just isn't able to handle that much volume.  She has also been getting more formula and less milk.  I am nearing my goal of 6 months for pumping.  We will continue to receive donated milk, even after the 6 month mark.  This will make our day to day lives so much easier.  On that note if any other Moms want to talk about pumping please feel to email me.

Feeding is still a struggle. It's amazing how feeding problems are a "family" problem and not just Ruby's problem.  Every aspect of it takes time and  patience from everyone involved.  Feeding sessions usually last an hour from start to finish.  This includes time for milk to go through the NG and th 20 minutes of sitting  on an incline to help with the reflux.  That gives us a two hour reprieve between each feeding session to play or sleep.  Sometimes we decide Ruby just needs a brake and give her a feed "for free".  Especially when it is very apparent that she wants NOTHING to do with the bottle.  It's  hard to keep each feeding session a pleasant experience for everyone.  Ruby has made small, but significant achievements lately when it comes to feeding.  When handed a new toy she automatically brings it to her mouth which is great.  She is starting to actually swallow some of the sweet potatoes we give her.  She is even starting to reach for the bottle and bring towards her mouth when we offer it and she's in the mood to eat.  These small things mean we are the right track, it's just a very very slow track.

 As we head into the weekend lease keep Jamie in your thoughts.  He is currently in the hospital with pneumonia and I know his family would love to take him home.  Also, little Carter is set to be extubated today!  Lets all hope  both of these CDH survivors have good days today.