Home Sweet Home

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.

Step by step

Well a lot has changed since Maddy's last post. On Thursday of last week they removed Madison from the ventilator! This was awesome to see for many reasons but mainly because she can now breathe on her own, she can lay on her back for the 1st time in her life, and we could again hold our sweet little girl. They also have now finished up the turning of the distraction device, this was stopped on Sunday night. Now that they have finished turning them they changed the hardware so it can now hold her jaw in place as the bone grows in between, the new hardware is lighter and not as big which is nice for her and us. This new hardware will be on her face for 4-6 weeks from this week. She has begun eating by mouth again and is learning how to swallow all over again. We now just waiting for her feedings to improve and they are saying that it should just be a few weeks or so to get her to where she needs to be in order for her to come home. I can tell you that both Amber and I are really, really, really ready for her to come home and Kennedy is ready as well. They have also been talking about maybe getting her a prosthetic mouth piece to cover the cleft and help her eat better but this usually comes after the distraction device comes off. It feels really good to see Madison awake and alert, and she has started to smile at us which melts our hearts. It was also great that Amber got to hold both her girls on Mother's Day. Thanks again for all the support and love we have felt from all of you.

The road towards recovery

So it has been 1 week now since Madison's surgery. She has been doing well but her recovery has been slower then expected and we have had some bumps along the way. They have keep her pretty sedated this week, she has been experiencing a lot of pain from the device on her face and discomfort from the ventilator. We have also seen a noticeable difference in her chin and tongue placement. They started the distraction process on Friday and will continue to turn the device until the 14th. She also was supposed to get the ventilator out yesterday but with the pain she is having and the amount of pain medicine they are giving her they are taking that day by day. She has had a fever a few times so they are also trying to ensure she doesn't have any infections. So we continue to take it day by day and hope we can hold her again soon.
We also have amazing news, Kennedy was finally able to see her little sister face to face. She was so sweet and behaved so well as she just sat there whispering to Maddy and holding her hand. Amber continues to be the rock of our family as she sits by Madison bedside watching over her as I have now gone back to work and only get to see her before or after work. Continue to pray for her and hope for a speedy recovery, and thanks for all your words of support they help us get through this.