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.

Surgery Day

So Madison finally had her first surgery today. Amber & I stayed last night at the Ronald McDonald House so we could get to the Hospital early in the morning to be with her one last time before the surgery. So she went in around 9:00am and we signed the consent forms and met with the surgeons. Our Parents all came up as well as Candice to sit with us while we waited. After 3 1/2 long hours we had our surgeon come out and inform us that everything went as planned and that she was doing good. We then waited for another hour as they helped her clean up and get comfortable because she was in a lot of pain. So after all of that we got to see our beautiful little girl again. It was hard to see her with the distraction device on her face and to see her sedated like that but we are very happy to be on the road towards recovery. She will be pretty much asleep for the next few days and we will be able to hold her again as soon as they remove the ventilator (which will most likely be Monday). They will also start turning the distractor on Friday and that should last for about 14 days. They are saying she may come home in 3-4 weeks. Please keep Madison in your prayers & thanks you all for the love and support you have shown us so far, it means the world to Amber & I

A plan has been made

After a few weeks of waiting, watching and doing tests we finally have met with the ENT surgeon and created a plan for Madison. He spoke with us today and after looking at the sleep study and CAT scan they have learned more about the severity of her PRS. They are saying that her airway is blocked about 80% of the time, this is also why we have seen her feeding & breathing decrease over the past week or so as she is guarding her airway instead of swallowing her milk. So they gave us the different options out there (mainly the options I listed in my last post) and after we discussed them with the surgeon he & we felt that the jaw distraction surgery will be the best path to go down. As I discussed in the the last post this is when the they saw the jaw in half and place a device on her face that will pull the jaw out also bringing the tongue forward and opening up her airway. they will extend the jaw over a 14 days period, after which they will keep the device on her for 2-4 months (she should be able to come home 2-4 weeks after the surgery). The surgery is going to take place on Monday night or Tuesday morning at PCMC. They also may need to intubate her after the surgery for a few day until the jaw comes forward enough for her to be able to lay on her back. Amber & I are very happy that Madison is getting the surgery, mainly because this will permanently fix her issue and not just band aid it for a few months or years, and while she will still need the cleft pallet repair in 9 months this will also give her the ability to be a normal baby, lay on her back and not struggle to breathe & eat. I will attach a picture of the jaw distraction device, it is a little scary looking but it does the job. Thanks again for your support!

Movin' on up, to the east side

So Maddy has been very busy the past 2 days. On Tuesday Amber & I spoke with the doctors about the progression of Madison (or lack of progression), they agreed with us that she was not really improving with her feedings or her breathing. They felt it was time for her to go to Primary Children Medical Center (PCMC), and while this news is a little scary it is also exciting because we know she can now get the help she needs. So on Thursday morning Madison was transported to PCMC to their NICU. Since she has been there we have already had a great team of Dr.'s and nurses, They have been evaluating her and have given her a CT and she is doing a sleep study tonight. We also had the genetic specialist speak with us today to ensure she doesn't one of the many syndromes that sometimes accompanies PRS (i.e. Stickler Syndrome). They do not think she has any of these Syndromes but they don't want to rule it out until she meets with the eye doctor and until they do genetic tests on Amber & myself. So after all these tests and studies they are going to put together a plan for Maddy which may include one or some of the follow:

• Button surgery- This is when they connect the tongue to the lower lip so it won't fall back and block her air way. This can be attached for months to sometimes a year or two.
• Jaw distraction surgery- This is where they saw the jaw in half and put a brace type device on both sides of her face and then slowly extend the jaw over 6-8 weeks as bone grows in the space missing. read here for more info, http://www.pierrerobin.org/jaw-distraction.htm
• other things like a Tracheotomy, a gastro tube for eating, and a few other procedures.

• She will still have the surgeries to fix the cleft pallet but again that will not happen until she is 9-12 months.

They had told us that by today, Friday we would have a plan in place but they wanted to do more tests before they started anything so hopefully Tuesday we will have clear plan. We are both very grateful to have her at PCMC now and feel she can finally get the help she needs, and while St. Marks was great even they admitted there was nothing more they could do for her besides watch and feed her. Hopefully now she can get the help she needs to get on the path towards getting better and being able to come home, Kennedy misses her little sissy. Amber and I are trying to do our best to hold it together but sometimes the wall comes down and we break down a little (Just ask the Shopkeepers at IKEA). We also know that if we continue to have faith the lord he will take care of our family and we thank God every day and night that we have all the support we do from our parents, families, friends & co-workers. We will continue to keep you all updated, thanks again.

Highs & Lows

So again we have been spending the last few days living at the NICU hanging on each feeding and hoping for the best. We have seen Madison get up to as much as 65cc over the last couple of day which is fantastic and is where she needs to be consistently for 2 full days before she can come home. We had found a new way of positioning her that has shown us awesome results and Amber and I thought we were seeing the light at the end of the tunnel... Until we went up there today and saw her only get 20-15-23cc, which was hard. You start to get your hopes up and begin to start planning for the next stage and then we have a set back and it kinda rocks you. It was hard, and discouraging but we continue to forge ahead. It is also challenging when speaking with the Dr.'s & nurses because they never speak in time lines and are always saying "we will continue to watch her and monitor her progression " never giving you a week, day or month to move towards. Amber continues to be amazing throughout this and she has so much love to give to all of us. Kennedy has been such a good girl these last 2 weeks and has done so well with us being gone everyday, and she greets us each day with hugs & kisses as we walk through the door. We love Maddy so much and hope that you all who are reading this will continue to pray for her. Thanks again for all those who continue to support us!