So we finally have our little girl home with us! Since my last post we have been struggling to do everything we could to get her home. After she began to eat by mouth once the distraction had finished she had started just where she had left off, not eating much. Her first day she took 12cc by mouth and unfortunately she has yet to improve from that number. PCMC wanted to keep her there until she got to 80cc per feeding, every feeding, for 2 days. We were no where near that and we were not seeing that in the near future. So Amber & I discussed it and we felt like she should be home now, and that we knew how to feed her by her nose tube and could learn how place the tube ourselves. So we made a plan to put some pressure on the doctors, and Amber implemented our plan amazingly, she truly did an amazing job convincing them that we were ready! Finally they made the call and today was the big day. We both learned how to everything the nurses had been doing and we have now spent the past few hours with both our girls loving being home, TOGETHER.
We know that it will be challenging for the next few weeks but well worth it because she is now home where she should be. We also found out that she will get the distractors removed on June 21st and from there will find out our next move. We are so happy to all be together and so happy to not have to drive 100 miles round trip everyday to see our beautiful little girl. We are so thankful for everyone who has helped us our parents, family, friends, & co-workers you have all really helped us get through these rough 7 weeks. I love my wife & girls so much, and being with them together at the same time is perfect.
By the way if any of you are wondering, its mustache May at IKEA.
This comment has been removed by the author.
ReplyDeleteThat is awesome to hear! My prayers will continue to be with you as you continue the healing process with Maddy.
ReplyDeleteWe are so glad Madison has finally been able to come home! That has got to be so great to have your family all together! I hope the next few weeks go well for you guys. Congrats on bringing her home!
ReplyDeleteEric and Amber I am so happy for you this day finally came! You all look so happy in the pics to have Madison home with you! What beautiful girls they are!
ReplyDeleteI can not tell you how truly happy I am for you. That is the best news I have heard in a LONG time. There is NOTHING quite like being home together as a family. Enjoy! KEEP US INFORMED! You have an adorable family and we love you all so much! TAKE CARE
ReplyDeleteI am SO glad she is home!!
ReplyDeleteyay!
ReplyDeleteFunny how you instantly become experts on whatever your children struggle with and need you there for huh Eric? I think you and your wife are amazing Eric. Wow! You have expressed yourself and updated this blog so well. I have gone through a few health battles with one of my kids @ PCMC and I wish I would have documented more with my emotions, photos, etc... Good luck with the next few weeks/months. I am thinking about you all.
ReplyDeleteI'm so glad she got to go home! I am so glad I got to cuddle with her before she left! Thanks so much, it helped make my day a little better! Love you guys!
ReplyDeleteI'm so glad to have found this blog. Our son is at PCMC and will be getting one of the two surgeries (but probably the jaw distraction) in a week, so it's really encouraging to read about how the process goes and see a positive outcome. Your daughter is beautiful!
ReplyDelete