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!

The beauty of our child

We again spent the day with Maddy in the NICU. She is getting stronger and drank on average 50cc per feeding which is great. But Amber and I are beginning to realize that she is not coming home right away and while she is heading in the right direction she still has a long ways to go. The more we learn about Madison's issues the more we see that the cleft pallet is the lesser of her problems and that the Pierre Robin Sequence (PRS) is what she will have the most challenges with. PRS is what is causing her issues with breathing and is what is stopping her from eating easily. With PRS the tongue is shorter and sits back which make latching on to a nipple of a bottle extremely difficult, also because it sits back and the jaw is set back it make it very easy to have to tongue block the air way. Nothing is more stressful than watching your 6 day old baby begin to turn gray as you are feeding her just because she is positioned a little off. So doing things like driving her home become tricky to think about because she will need constant supervision at least for a few months to come. But we are learning how to work with her as she learns how to work through her own challenges. It is amazing to see the pure will of Maddy as she learns and develops and figures out how to make it work.
We also spoke with the NICU coordinator today to check on how our insurance will be covering Madison's stay in the NICU, as well as the medical equipment we will be needing, the home health visits once we are out of the hospital, and her upcoming Doctor visits & surgeries. The coordinator told us that we have the best plan she has seen in 5 years or so and outside of a few co-pays at the Doctors visits everything will be covered at 100%!! Which is awesome especially because we have no deductible either. It just makes me love IKEA even more.
I am so lucky to have such an amazing wife who has been brave through this and you can see the bond between a mother and her daughter, I love her so much. We have also been so blessed to have each other to lean on and to have Kennedy's smiling face to come home to each night. We also have such wonderful parents who are always willing to drop everything to help us with Kennedy, dinner, or giving us what ever support we need, we love them all very much.

Good signs

Yesterday and today we have been seeing a large increase in the amount of milk that Maddy is taking by mouth. she has gone from just 3-15cc the 1st few days to now taking 40-55cc almost every feeding! This is awesome and as soon as we can see 65cc every feeding for 2 days she can then come home, so while we are still a few days away we are defiantly getting closer. It is a hard because we have many different nurses, Doctors & physical therapists who all seem to think they have the right answers and we have no answers. So today we chose to go with what we feel is the best for Madison. I guess it is just one of the challenges we will learn to deal with. So Maddy is great, Kennedy is happy to be with us every night and morning and mom & dad are tired. Thanks again for all those who have been there for us.

One day at a time

So today has had its highs and its lows. We woke up and spent our last morning at the hospital. We were able to be with Maddy for a few hours and Amber was able to feed Maddy with a bottle for the 1st time, IT WAS AMAZING!!! But then we had to leave our little girl in the NICU and we had to go home, it was not easy but we also needed to be with our other angel Kennedy who was missing us so much. We will be spending the next few weeks in and out of St. Marks and be watching as Maddy continues to get her strength and as her Milk intake continues to grow (she has gone from 3cc-4-8-14-11-13 today). Thanks again for all those who have been showing us their love and support, it means a lot.