Saturday, January 16, 2016

Welcome 2016

Is this what normal feels like.....no tubes, no machines, no weekly appointments?  I love it and in true fashion, just as we get a feel for what normal is, we're going to throw another baby into the mix.




As we gear up for baby number two, we are still focusing on Lucy and her eating.  Lucy continues to gain weight slowly (she has gained .2 kg) since we pulled the tube.  As we embark on our third month, I really thought I would be more crazy about her eating and drinking.  Following her around trying to get her to drink and eat at any time.  Although, maybe I should check with Mike and out parents.....they might think otherwise.  We are slowly seeing increases in food intake and we are working towards eating more like a two year old.  Holy Moly....a two year old.  We have introduced solids.  Some of her favorites include mac and cheese, meatballs and french fries.  She loves to dip...fries in ketchup or her fingers in anything.  As she gets stronger with solid foods (and eating in general) we will be able to look at making foods more heart healthy.  Right now we are bulking up on calories, by adding heavy cream and cheese to anything we can puree.  We will also look to move away from pediasure and towards whole milk.





We are seeing her personality shine through as well.  She is talking up a storm, repeating anything you say.  Occasionally, she will say something on her own.  The other day I caught her at her table playing and singing "bub bub bubble, gup gup guppies".  Bubble guppies is her favorite cartoon.  She repeatedly asks for 'guppies on' as she throws the remote at you.  She loves her Elmo book and knows it by heart.  You can say the first word in each sentence and she will finish it.  She knows her colors and can count to five with some help.  She is one smart cookie.



We have started to decrease therapy and are now down to twice a month for occupational therapy and physical therapy.  I am looking forward to seeing how she fares in her neurodevelopmental clinic in February.  My hope is at our yearly early intervention meeting in October we will be finished with all therapies.  Lastly we are still waiting until Lucy turns three for her third surgery.  We hope that we won't hear any different news at her cardiology appointment at the end of February.

This blog post is late as I wanted to have my level 2 ultrasound and echo for the baby.  We completed both and are happy to report everything is healthy!  The four chamber heart is growing nicely and there are no other issues with growth!  My alpha fetoprotien is high again but at this time they are seeing no indication that is reflects anything wrong with the baby.  I will have my liver enzymes tested again along with a liver ultrasound.  The plan is to follow up after birth to see if there is something else going on (I hope not).

Another heart mom I know had her second child last summer (a healthy boy).  She told me that her second maternity leave was like a vacation!  I am hopeful even with less sleep I will feel the same.  A maternity leave at home in our own house.....how exciting!