Monday, July 28, 2014
YES, that's a title in all caps because I am so excited to announce McKenna is finally making progress. October 2013 marked two years of no improvement to the formula feeds. By improvement I mean no decrease to her tube feeds. We saw her GI in January 2014 and he told us to attempt slow tube decreases on our own and if she doesn't gain weight then just increase her formula to previous quantity. He also told us to attempt decreasing her meds (ones to prevent retching) and if she starts having problems then just start the meds back up. He made it sound so simple and easy, but with the road we have traveled the past five years we know better then that. We started in February decreasing one of her meds that has the worst side effects with possible heart issues. We were able to decrease it by 1/4 but haven't been able to decrease it any more due to coughing with the decrease. We will decrease that med more as her formula feeds decrease or stop. April we did our first SUCCESSFUL tube decrease in 30 months. We were able to bring her down from 1 1/2 boxes of formula to receiving only one box of formula. She did it. She maintained weight and even gained weight. She didn't appear to have any positive side effects, but it sure did effect mommy in a positive way. It was a great reminder that God is watching over us and He still is in control. July 3 we did another formula decrease and today McKenna is only receiving half of a box of formula (approx 13% daily caloric needs). This is amazing and such a big step for McKenna and our family! She will remain at this quantity for another few months. The twins start school in August and we need to see that McKenna can gain weight while at this quantity and while attending school before we will attempt the final formula decrease. McKenna can't use her feeding tube for three months minimum before the doctors will take the feeding button out. While we are doing well on formula, we do still need her to drink too. She is about 70% fluid fed through tube still each night. Mommy's timeline is never what God's is (hahhaha) but our goal, if McKenna gains weight, will be: October final formula decrease November attempt to quit the meds November work on fluid decrease through tube We are so grateful for those that have continued to pray for our micro preemies over the past five years, and for all that have jumped on board with prayers along the way. We are blessed beyond measure and so grateful for every blessing God has give this family and can't wait to see how He uses McKenna and Keaton's stories to change the world. Thanks prayer warriors!