Heres the newest with little Quinn: 7 and a half weeks old. Crazy. She has been so alive and alert, so joyful and fun. She is now on a very minimal dosage of her methadone twice a day! While it makes her just a little extra fussy, she is handling it really well. Her feedings have been a struggle. The fact that she is capable and desires to feed is encouraging and an answer to our prayers. However, because of what she has been through with her lungs and being on ecmo and not eating for 7 weeks, her coordination and abilities to swallow/suck/breathe all at the same time are just not there. She wants to and tries, but it is hard for her to even get a few MLs of milk and her breathing becomes very labored. The occupational therapists have been working with us every day since Monday and observing her. Each day she is able to drink less. But each day she does seem to catch on to their exercises a bit quicker. All of this to say, she has shown us that the decision to surgically place a gastronomy tube had to be made this week. The doctors and her care team want Quinn to be able to thrive in her home environment while continuing to receive the feeding training and care that she needs, because feeding is all that is keeping us here now. Her developmental milestones will continue to suffer if she stays here much longer, and the way things are going, she will need most likely a few more months of treatment to get her eating enough to be able to sustain herself. Today they are starting the process for her surgery by taking some X-rays of her GI tract and looking to make sure everything is normal and in the right places. The surgeon will then assess her to see how to approach surgery and then we will schedule. Hopefully it will be within the next week. Its not what we were wanting, but its the best choice for her to get her growing, get her home, and continue to do what she needs to do in a better situation for her and for our family. Ill post updates as soon as things get going! Wed love prayer for a smooth process, minimal invasion, no infection, and for this whole procedure to really help Quinn to flourish more in the long run! Xoxoxo- The Allens.
Posted on: Thu, 25 Sep 2014 14:27:21 +0000
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