Feedings and Flow

 

After she was placed on ECMO Dr. Kays said "We've done all we can do, but we can't make her get better.  Only she can do that."  Then he rubbed his head with both hands.  It is a well known fact that he only rubs his head if he is not happy with the way things are going.  It was at the moment that we knew it wasn't good.  Although, this week I have decided that Makenna heard him loud and clear and became determined to get better!  She has been such a rock star during this whole process and continues to amaze everyone and surpass their expectations.  Many nurses have stopped by to see Makenna and they always mention how she was the sickest CDH baby they have seen in a long time (they usually have 4 to 6 at a time) or that they just wanted to come by and see the "miracle of the NICU."  I always knew she was a fighter and that she was going to be okay. However, I also always knew that she was very, very sick -- I mean...they don't 1 day old babies on ECMO for fun...but hearing people who work with these critically ill babies for a living tell us how sick she was, just makes me cherish my beautiful miracle even more! 

She started showing lots of little expressions this week --- including this adorable little smirk!  <3

Since the ventilator is gone we have shifted our focus to feeds, weaning medicines, and getting her onto regular nasal cannula oxygen.

Currently with feeds she receives 52cc's of breastmilk through a feeding tube in her nose.  They place the milk in a syringe and hang it up.  This lets gravity send the milk through the tube and into her stomach.  Also, before each feed they suction out her stomach to see if there is anything left from previous feeds or if there is any air trapped in her belly.  For the first two or three feeds she would have a little residual milk left over from a previous feed; however, for the last week or so her belly has been empty each time they do the suction.  This is a great sign because it means that her body is properly digesting her food -- she has also only spit up once and I blame that on the fact she was gagging on her ventilator at the time!

We have also started to introduce her to the concept of breastfeeding.  She loves her pacy and sucking on my finger, so we know she has a well developed sucking reflex...now we need to work on swallowing.  She tends to get scared when she gets too much in her mouth or starts to cough as though she is choking.  I am excited to get to nurse her, although it does worry me that I can't tell how much she is actually eating.  Right now she is allowed to "attempt" nursing, but she is still receiving full feeds in her tube because they assume she's not getting much milk.  Eventually they might start weighing her before and after feeds to see how much she is eating, but it is hard to weigh her oxygen and lines. 

Speaking of lines, Makenna had 14 medicine pumps hooked up to her at one point and as of yesterday she now has 0!  She is still receiving sildenafil for her lungs, two different diuretic to remove fluid from her lungs, and an acid reflux medicine (just incase) through her feeding tube.  She has been weaned from her pain med, sedation, blood pressure, lipids, and many other medicines!  These medicines were all given through IV's...which she had in each foot, her head, and both hands because many of the medicines and fluids couldn't be administered in the same sight as other medicines -- now she is finally IV free!!   Being IV free is amazing because IV sights don't last forever, so every so often a sight would stop working and they would have to relocate the IV to a different part of her body, which meant poking her with needles...a lot.  Not fun!   Anyway, yesterday they also took out the PICC line that was in her leg!  Now the only thing on her legs/feet is her O2 monitor on her foot, which is just a glowing light that doesn't hurt her, the oxygen in her nose, and her feeding tube. 



 Before the lines were removed (usually they are more neat...this was minutes after surgery) and after the lines were removed!

Another big event that happened yesterday was that they turned down the flow of her comfort flow oxygen!  She was getting 4 liters of pressure and now they have turned it down to 2 liters.  Makenna handled this change wonderfully and her stats didn't fluctuate at all!  Tomorrow or Monday the nurse practitioners are going to meet with Dr. Kays to discuss a weaning plan to get her off the comfort flow and onto regular nasal cannula oxygen.  I can't believe she has only been on the comfort flow for a week and they are already talking about weaning her off of it!  As of now it sounds as though they plan to send Makenna home on the regular oxygen, which means that once she gets onto the regular oxygen the only thing left for her to do is master feeding and than we can go home!

To master feeding she needs to receive full feeds from either nursing or a bottle, keep her milk down, and consistently gain weight from her feedings.  Once she can do all of these things we are outta here!