Happy Thanksgiving!!!

The last 30 days has opened my eyes to a lot of things.......It has made me realize that I am .......

Thankful that I have learned to trust my own intuition, no matter what anyone else says.

Thankful for the Urgent Care doctor for having the forethought to look beyond a chest x-ray.

Thankful to the person with the vision of the Levine Children's Hospital and for those that made it possible.

Thankful for the stellar staff of nurses and doctors that treated and cared for our daughter as if she were their own.

Thankful for family and friends that just stepped in without being asked or with no questions asked. Without you we might not have made it through.

Thankful to the Harvest Staff for their thoughtfulness and caring not only for Madelynn's recovery but for helping with our other children that they don't get lost in the process.

To be so lucky to be surrounded by so much love is sometimes unfathomable. We are truly Thankful. Please remember those families who are still at the Levine's Children's Hospital. Please pray that the Parents will find peace in their walk with their child, as it is probably not an easy one. Remember to be Thankful for what is right in front of you and don't miss a minute of it.

Happy Thanksgiving!!!!

The Addler's

Philip, Chelsea, Kaitlynn, Jackson and Madelynn

Sleep deprivation

Yes, I realize it has been a week since I last posted about Maddie so here we go........We finally made it home about 5pm last Tuesday. I didn't think we were ever going to get out of there. Maddie came home with taking only three medicines. She will have to be on a blood pressure medicine for a few more weeks, a baby aspirin every day for the rest of here life and a multi vitamin with iron. I was very relieved. She still does need chest physical therapy to help keep it clear because of the strep-pneumonia but she doesn't mind that.

Our main goal now that we are at home is to fatten her back up. She is eating almost double what she left the hospital eating which is great but she still is not up to what she was eating before surgery. To make sure she gets as many calories as possible I have to wake her every three to four hours to eat. This is a child that would sleep from 8pm to 5am before surgery. Not to mention I have to be conscience enough at what ever ungodly hour it is time for her to eat. I thought I was sleep deprived when she was born, that was a walk in the park. My hope is that by Christmas she will be back up to her weight before surgery and I can just let her sleep till she wakes up to eat. That old routine is looking better everyday.

Once we settled in I realized how exhausted I was. I slept when she slept at least I tried. It was all I could do just to move around the house. Poor Phil has been so busy with work and side work he hasn't had a day off in about 13 days. It was all he could do to help get Katie and Jack fed and bathed and back off to school the next day. Finally, yesterday I started to feel better and went out and ran some errands. Phil only had to work Monday and he has the rest of the week off. We are hoping to get some sleep and get few things done around the house.

We were going to go to Cleveland for Thanksgiving to visit my brother. I was really excited about it, However we felt it best not to travel. My parents are still going. So Phil and I had to decide what to do. After talking with a few of our close friends they also were going to be alone for the holiday. Well not anymore. We are going to have 11 people at house for Thanksgiving. Phil and I are going to deep fry the Turkey and make a few sides and everyone else is bringing the rest of dinner. It is going to be unbelievable chaos but it will be the good kind.

Maddie had to go for a chest x-ray this morning and she goes to the family doctor tomorrow for a weight check. We have told Katie and Jack about the Thanksgiving dinner at our house and they are very excited. There is no school for them Thursday and Friday so I believe they will help me decorate the house for Christmas. I always like to have the decorations up before Katie's birthday (Dec 4th). I haven't really talked about Katie and Jack too much. Katie was acting up in her class but that has really subsided now that Maddie and I are at home everyday. She is finally getting used to the fact that Maddie and I will be at home and not the hospital. The next hurdle is getting Maddie sleeping back in her crib. Katie asked when Maddie was coming back to her bed in her room.

Maddie is a very soft voice and cry since having the breathing tube in for so long at the hospital so she is sleeping is a pack n play in our bedroom. It actually has worked out pretty well because when she cries it doesn't wake up Katie and Jack. Jack, I am not even sure where to begin with Jack. He has had the worse time with all of this. His behavior at school and at home has been a pure reflection of that. However, he has a teacher that was born with incredible patience and has been working with Jack. She has discovered how smart he is and how bored he is in his current classroom. They believe that this is part of the behavior problem. I have had to challenge him at home and he loves it.

If all goes well after the Thanksgiving Holiday they are going to discuss moving Jack out of his current class in in with the 4 year old's. His current Teacher is aware he needs a bigger challenge and she can not give it to him because the rest of the class is not there. So they are considering moving him. I will find out more on this later. His current teacher thinks this will curb most of the behavior problems because he will learn new things. One of the other reasons Jack has been having problems is because his best friend in his class left the school. I wish some one would have told us. Jack finally started talking about it at home. It took me a few different conversations and asking the right questions and he told me. That was a really big deal to lose a best friend and not understand why they just disappear.

My hope now is stay on top of things more so that things like that don't slip thru the cracks again. Since I am on a leave from my job till Maddie can go back to public daycare I can just focus on our family and get everyone going in the right direction again. Phil jokes all the time that we are going crazy and Jack is the driver hopefully in the next few weeks I will be the driver.
Hope you are having a great week.!!!!! TTFN

Busting Out

Well, I sure did not think this day would ever come, after 21 days in the Levine Children's Hospital Tuesday morning I will be taking Madelynn home. She will have lots of doctor visits to monitor her growth. Her biggest hurdle now is learning how to eat again. Her body has gone through a major shock and has to learn somethings over again.

I think once we get home and get her in a routine she will start thriving again. It will be nice to sleep in my own bed more than one night in a row. We will be making lots of doctor visits and it will be up to them as to when she can go back into public daycare again. If I had to make an educated guess about mid December as long as she is eating well and gaining her weight back. When she was born she weighed almost 8lbs. The day of her surgery she weighed almost 12lbs, today she weighs just over 10lbs.

Over the last few days in the hospital I have heard lots of good things about Maddie. Today, was the one that hit me the hardest.........There is a nurse practitioner who had heard about Maddie but had not met her till today.......She said to me, so this is the Miracle Child everyone at the office has been talking about and yes they were right she really is a beautiful baby. After that I think I spent about 4 hrs today just staring at her.

Maddie's condition is a common congenital heart defect. It was an interrupted aortic arch or a coarctation of the aorta has a few common types. Maddie's type is very rare and has been the talk at the Cardiologist. Every Thursday all the doctors in this practice have round table discussions about current patients and the treatment for them. I like this because the patient has the better chance of getting the best care possible.

During our stay here at the hospital when the doctors had to make really hard decisions about the really sick patients they would then come and see Maddie. I would here things like she is the wellest child on the floor, she is making great progress today, some would just come in and stare and look at me and say she is just so beautiful. I think is some ways Maddie brought them joy and reminded them that some days it does work out the way it is supposed to.

The doctors and nurses are some of the best in the business and travel great distances to work here. They are a special breed of people with amazing gifts. One nurse lost a patient one night and had to care for Maddie the next. Since that night she cared for Maddie she came to see me every night she worked to make sure we were okay. God must have a special place in his heart for her.

I will miss the staff here because they are great people but I am very glad to be going home. TTFN

Graduation Day

Hi Ho Hi Ho It is off to the 8th floor we go. Yes, Thursday Maddie finally made it to the Progressive Care area of Levine Children's Hospital. Katie and Jack came to see her last night. We all had dinner together. It has been really rough on Katie and Jack and I miss them horribly. The best news of the day is that after much debate Maddie will remain on her original formula and she took 2oz by bottle today. Which is stunning. My hope is that she will only be here another week.
Grandma Bacho (my Mom) is staying with Maddie tonight so that I can be with Katie and Jack. Grandma Covey (Phil's mom) has been helping out with Katie and Jack at our house. We have been very lucky to have Grandma Covey (and Aunt Jackie) thet have been able to fill in where Phil and I can't.
Maddie is definatelyon her way. Thank you to everyone who has been able to help us. More importantly Thanks for all the prayers and well wishes!!!!! TTFN

happiness to heartbreak

Monday afternoon we were told Maddie would go up to Progressive care Tuesday afternoon. This is where we learn to take care of her so she can be discharged. She has had another complication. It has to do with her intestines digesting and adjusting to the new blood flow. So she is still in ICU until that is resolved maybe another day.

I was so disappointed. I know the doctors are doing what is best for her. They don't want to send her to progressive care only for her to come back down to ICU. I talked to the doctors this morning and they truly are hoping we are only one more day in ICU. I am staying at the hospital because I am getting to feed her and take care of her some there. We have help from Phil's mom and sister so that Katie and Jack are taken care of and I can stay on the doctors to get her to Progressive care.

I am trying to stay positive for Maddie. She does look really good we just need to work out a few more kinks. TTFN

Day 12

Wow what a difference a few days makes and lots of prayers but anyway. I thought you all would like to see that my smiling girl is back. She really is doing great. She lost a lot of weight the focus now is getting the weight back on. She lost about 20% of her body weight and is so thin. But each day she gets weighed and slowly she is gaining the ounces back. They are feeding her high calorie formula.
I am getting ready to leave to go spend the evening with Maddie and be there in the room when the doctors do rounds in the morning. She is no longer a baby elephant. As you can tell she is on a nasal cannula (hi flow). She has to be off the hi flow and just on regular oxygen before she can be moved to a room to get ready to go home.
Today I spent the day with Katie and Jack while Daddy and Mamaw spent the day getting all the smiles. I am so happy to see them again. She probably will not be able to go back to public daycare till around Christmas time and we will have to be very careful with germs. She is not allowed to have a flu shot this year. Needless to say we will be keeping her out of the public as much as possible. But she is truly on the mend and the nurses are have a great time dressing her. As you can tell by the socks. I again think everyday I don't know how the nurses do their job they truly are amazing people. I am glad Maddie could bring them some joy.
Thanks again for all the thoughts and prayers. TTFN

Day 11 and 12