Thursday, July 3, 2014

Now You See It, Now You Don't

I want you to look closely at the following pictures and see if you can see the difference.  Look carefully beyond her cuteness.  Notice anything?

Notice the stylish tights wound behind her back and on her hands?  This was my brilliant idea to keep her from pulling out her tube again.  She was able to pull off the socks we put on her hands.  I think I should patent this and make a bajillion dollars.  Or at least enough to pay some of her medical bills.  The tube tucked behind bows also helps keep it from being tugged out.

Look at that cute baby.  You can't tell me that she looks like she is suffering from "Failure to Thrive" anymore.

Well done!  You are right.  Her ng tube is now out.  My baby girl is now able to drink out of a bottle. 

Juliet partially passed her latest swallow study.  She still aspirates on regular liquids, but she can now tolerate thickened liquids without any going into her lungs.  She will be on thickened liquids for the next one and a half to two months for sure and then we will reevaluate to see if she can tolerate regular liquids.

What does this mean?

Remember how all of our mothers put rice cereal in our bottles to make us sleep better at night?  And do you also remember how mothers today are told to never put rice cereal in a bottle and don't start introducing anything other then formula or milk for the first four to six months or your child will grow up fat with food allergies, diabetes, eczema, and celiac disease if they are lucky enough to avoid (ironically enough) choking  on the bottle of death first. 

Goodbye feeding tube!

Well, we were told by medical professionals to put rice cereal in her bottle to make it easier for her to swallow without aspirating.  And not just a little either.  We have to put over 3 tablespoons in each 4 ounce bottle. The sludge is about the thickness of a smoothie.

Unfortunately, breast milk has an enzyme in it that causes the liquid to not thicken properly, so Juliet is on formula now.  And since I am hopeful that she will eventually be able to drink normally, I have to continue to pump to maintain my supply.  My freezer is being overrun with an apocalypse ready supply of milk - assuming that electricity is still running during the apocalypse.

Ironically, my schedule hasn't changed too much with this development.  Juliet throws up her whole bottle if she is laid down right after she eats, so we have to keep her fairly vertical for 15-20 minutes after she eats, and I am still pumping several times a day.  But, unequivocal progress is a wonderful thing.


just me said...

woo hoo!!!!

Anonymous said...

So happy to hear! You are a good mommy to keep pumping... I did it for a year around the clock. It is exhausting to say the least, but you go girl! She looks amazing :)
~Jenny Franks

Carrie H. said...

My friend needed to do the same with her son. He is now an honors student and one of the nicest young men I know. :) No eczema either...wink.