Day 17, Monday November 26th

Today Lyla is 2 months old. Out of the 9 weeks she's been on this Earth, we have had her home 2 of those weeks. People ask how Parker and Mabel are through all this and they have been so great. To them, this is the norm. When you have a baby, they stay at the hospital for a really long time. They know no different. They know Lyla is their sister, they are excited she is not in Mommy's belly anymore, and they ask about her or talk about her everyday.

  The highlight of today was Lyla getting her Mic-Key button. This is what replaces the Gtube after 6 weeks. The tube was removed this evening and Lyla did great! Hardly a fuss. Interesting to note that after the tube was removed, the nurses noticed that the stitch that was on the tube in the inside of her tummy was really tight. This may have been the cause of her tube clogging... Today, she has actually been doing great as far as not having any fits or spitting up! She isnt getting any food in her tummy (just her small intestine) so that explains the no spitting up. But she still has been coughing and hacking a little like she wants to throw up, but there is nothing to come out. Frustrating. I think the plan may be to insert a line from the mic-key button to her small intestine so she doesn't have to have the ND tube in her nose. This way she can continue to gain weight and not spit up. However, the longer she goes without getting food in her tummy, the smaller her tummy can get and therefore messing her up later to not be able to get enough volume. Frustrating.


(When feeding through the mic-key, the button pops open and the tube line connects into the button and you turn to lock it in. This is how it is shown. When the tube is disconnected the button is very similar to the thing on a beach ball that you blow air into)

She has also been getting a shot twice a day (in her tummy) with a drug to help the blood clots in her leg that formed as a result of the Central Line that was put in. These, as you can imagine, are terrible. It is suppose to be for three weeks and I think we are on a little over two weeks, so hopefully the clots are getting better. Cheryl (primary nurse) said they should be checking on her clots soon. Fingers crossed.

Off Digoxin. Said it wasn't working/doing anything.
Off Reglan, may be causing spitting up.