Roller coaster weight

Kiera is not yet 20 lbs.  When she was 100 percent tube fed, she did reach 20 lbs but that was back in January 2011.  With weaning, her weight drops every time we drop the number of calories we tube feed her but then as she eats more and more, she manages to put on the weight that she lost.  However, she has yet to gain more weight than she loses.  We weigh Kiera every week and I was surprised to find that she had gained half a pound this week - she is still not 20 lbs but she actually put on a little more than she lost last week.  We send the weight every week to her feeding doctor who either suggests we drop, maintain, or increase the number of tube fed calories.  I know she will suggest dropping.  I'm thrilled!  Another step forward on the road to having no tube.

Tube weaning . . . continues

Kiera Grey Stoesz - 19 months

I decided it was time to give everyone an update on how Kiera is doing.  I don't have time for the full update tonight and I'm not even sure that anyone is reading this blog anymore.  The full story of the past few months will be coming but for tonight I'll say that we have an eater.  Kiera is doing really well eating and drinking, although she is still getting 1/4 of her recommended calories via g-tube.  Freeing her from 24-h continuous feeds has changed her life and our life and then reducing her feeds to make her hungry was another freeing step as it meant that the amount of time that she spends "hooked up" is down to just 5 hours per day.  Here is a picture of Kiera getting ready to climb up the stairs.  She is a real pro.

Last blog posting

Other than the usual colds and other bugs that children typically get, Kiera is doing well.  Currently, we are testing out a new feeding routine where she is fed for 13 hours per day and is tube-free overnight.  This seems to be working out okay except that Kiera is sick right now with a chest congestion that is an upper respiratory infection, sinus congestion, diarrhea, vomiting, and an ear infection, with a fever.  If the fever doesn't go away in the next day, we will take her to the doctor (actually I did take her the the emergency room and we got some antibiotics to take care of the nasty germs).  Kiera is at risk for aspiration pnemonia and ear infections because of her GERD (gastroesophageal reflux disease).  Kiera's fundoplication has loosened and so she is experiencing heartburn again, which is somewhat under control with Losec.

Here is one last picture to share with my blog followers.  It is a picture of Kiera enjoying playing with chocolate pudding.  Kiera did not play much with food until this past week and we just had to capture the moment.

Now that I'm back to my PhD studies after a year of maternity leave, I find it difficult to keep up with everything so it is time to simplify my life a bit.  One thing that has been difficult to keep up with is blog writing.  I find I'm doing it less and less anyway so we have decided that we will stop posting here.  If you are one of my facebook friends, you will find updates on Facebook.  So this is my last posting and we will be removing everything off of the web at the end of February.  Thanks to all who have been following our blog, your prayers are appreciated.

Hopes for 2011

The year 2010 was supposed to be a wonderful year.  We had big dreams in 2009 and were excited about the impeding arrival of our new baby girl.  Piper couldn't wait to be a big sister.  I couldn't wait to have a break from my PhD studies and was looking forward to being a mom to a newborn again.  Our expectations were high.
All that changed on January 11, 2010 when we discovered that Kiera (Altona's January 9th New Year's baby) had serious medical problems.  It has been a year of many downs and some ups and a lot of learning along the way.
Over the last couple of months, Kiera's health has improved in that she no longer experiences hypoglycemia.  This improvement is largely due to the fact that she was on 24-h continuous feeds via a feeding pump.  Just before Christmas, we began the long and slow process of getting her from 100% g-tube feeding to oral feeding.
As of today, Kiera is still not interested in swallowing food, although she is swallowing her own saliva which is a major improvement and is retching less often.  Kiera is tolerating a faster feeding rate via tube feeding and now can be "tube-free" for 7 hours per day, which we hope will result in feelings of hunger and, thus, a stronger motivation to eat.
As of today, Kiera will be in daycare with her big sister as I return to my studies.  My hope is that seeing other children her own age will encourage her to try to eat.  My hope is that 2011 will be the beginning of Kiera's tube-free life.

One step forward and two steps back

Kiera is still not interested in eating or drinking.  Her reflux is somewhat under control but we believe that her medication dose needs to be increased as she arches her back in pain twice per day (a few hours before her next scheduled Losec dose).  In addition to the heartburn, Kiera is teething and we are impatiently waiting for her sixth tooth to pop out.  It's been a slow process and we hope that it will finally happen this week.

Kiera's Opa has been teaching Kiera how to blow kisses and she did it for the first time today.  We are hoping that she will continue to do this and that it was not a one time event.  It was so cute.