Monday, May 14, 2012


Again.....I am sorry for the delay on the posts. The days seem to get away from us so quickly. It seems that we would have lots of time to sit and make calls, respond to texts and facebook messages, update the blog, write thank you notes, etc. but we surprisingly don't stop. We are constantly sitting back with Kirby in the ICU, talking to doctors, meeting and talking with new families, eating, running errands, etc., etc.  The days seem to fly by. Since the last update, Kirby has begun to make progress. After our setbacks last week we have made progress. After talking with the surgeon last weekend, he decided the best route for Kirby was not surgery for the narrowing in the pulmonary artery. He did not feel like it was significant enough to have caused our setbacks. He determined that we would let her rest for a few days and then begin to very slowly make ventilator changes and treat her lungs with some medications for the excess fluids in her lungs along with frequent suctioning and turning. Her lungs were not able to properly oxygenate her blood due to the fluids and collapsing of the lungs. They also drew off lots of fluid from around her lungs giving them more room to expand. During this time we also began NG feeds. After some issues with fluid around her lungs and in the chest cavity, they determined that she has Chylothorax (in my terms it is an issue where the fats from formula or breast milk leak into the chest cavity or around the lungs due to damage during surgery), which is a very common with children who have had heart surgery. So... they began feeding her a special perscription formula that is essentially fat free. This is not necessarily permanent and can heal with a little time. Over this week they have slowly wheened the ventilator and tweeked her meds. Kirby has shown us that big changes are difficult for her so they are taking it very slowly and this seems to be working well. Today has been a big day for her. They took her off her blood pressure meds, took her off blood thinner and substituted Aspirin (which she will take long term...probably for most of her life), took her off Morphine, introduced meds to wheen the Morphine and Versed (sedation medicine), increased her feeds to full feeds (she gets 18 cc's an hour over 4 hours which is equivalent to about 2 ounces in 4 hours), and wheened down ventilator support. With all that said, her blood gases have continued to be great! Thank you Lord! Continue to pray for her to tolerate the ventilator changes, to get stronger with her feeding and overall healing of her body. Oh yeah....I was able to change my first diaper on Mother's Day...make that 2 diapers in 1 hour...and Kirby made sure she did it right....2 big poopy diapers. Oh the things to celebrate!
AND....Kirby turned 1 month old on the 10th!


  1. Ashley, these pictures are beautiful and just make me want to cry. So happy to hear of her improvements!

  2. It was nice meeting you and Josh in person while we were at MUSC. I hate that we left without saying bye. You all will be in our prayers!!

  3. Thankful for the great update! Praise the Lord!!!!! Thank you for sharing all of this with us. It was so great to meet you last week and your sweet daughter. Our family will continue to pray for Kirby :)
    Tina B.
    Mom to Anna Grace (HRHS)