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

Peanut's Update

The last 24 hours have been both physically and emotionally exhausting. Peanut is doing pretty well. They did take her breathing tube out and she is breathing on her own and pretty well I might add. She does have the help of the baby elephant contraption if she needs it, but they are very pleased with her progress.
She seemed very uncomfortable and struggling a little yesterday but she seems better today. They did x ray her chest and the comment was her x ray looks "stellar". So although the progress is slow she appears to be doing well. I might actually get to hold her this afternoon. I can not tell you how excited I am about this.
Last night Phil and I had an opportunity to attend a meeting for Levine's Cardiac Kids. There was a guest speaker who was a local pediatrician she had lots of good information. Not only for Maddie but for Katie and Jack as siblings of a cardiac kid. It was difficult though. All of these parents are much further along in their journey than we are. I found myself just sitting in the back of the group crying. The parents there just kept reminding us it will get better.
When we got back to Maddie's room she was struggling to adjust to the breathing without the machine and I was afraid she would go backwards. Right now I only have the energy to go forwards even if it is very slowly.
I also found out that she has lost so much weight that she is only about a pound more than her birth weight. The nurses have been incredible and keep reminding me that she will never remember any of this and we will be more emotionally scared than she will. All in all Maddie really is making great strides. They are upping her feedings and just letting her be status quo for the weekend to gain some strength back.
A special thanks to Justine. Almost 20 years of friendship and you still always seem to make my world right again when I need it. I hope some day I can repay the favor.

Peanut is 3 months old today!!!!

Things are looking up. Maddie spent alot of time awake yesterday afternoon and evening. She is getting more formula than before and digesting it. She is wetting and pooping in diapers. This means here digestive system that has had a new shock of blood flow is working. She will have some more lines removed today. They will take out the breathing tube and and she will be a baby elephant, see photo below. The junk in her chest is breaking up and getting lighter.

At this point she has a monitor on her foot for oxygen level, monitors on her chest for heart rate, IV for fluids to keep her hydrated, the line measuring her blood pressure will be removed and they will us the cuff to measure her bp. The feeding tube will be removed and hopefully Friday we can take a bottle again.

Thanks to everyone who has been thinking of us and praying for us. It is a slow process but she is doing much better. TTFN

Slowly but surely.....

Well, They took her chest tube out which is good it means she can where clothes. They will be removing her breathing tube and putting her back to look like a baby elephant. See a previous days post. They had to stop her feeding because her stomach was not absorbing the formula. This is a normal problem with babies that have had her type of surgery. They have to put an IV in to keep her hydrated. Hopefully in the next 24-36 hours she will be able to take a small bottle. I will be spending the night at the hospital tonight so that if there is a chance she can take a bottle I will get to feed it to her. TTFN

Peanut's Progress

Her lung did collapse but she is doing very well with that. She still has the breathing tube in and it will come out some time today at the latest tomorrow. They are feeding her thru a tube in her nose to her stomach. They are uping that amount today and maybe tomorrow we will be able to give her a bottle again. They checked her pulses in her legs and feet and they are great.

I have to keep reminding myself. They have completely repaired her heart these issues are side effects to any surgery. She is mildly sedated and she has blood pressure meds and heart meds and an antibiotic for the pnuemonia. They are taking good care of her. I will be back to see her this afternoon and then back home to be with Katie and Jack. I will be back to the hospital in the AM. I want to be there when the Dr's make their rounds. She is the last one on rounds for her area so I should make it.

If anything changes I will let you know. She is coming along just slowly. TTFN

Minor set back

Well I went to the hospital this morning and she was doing pretty good. They were just about to feed her her first formula bottle. She took it, burped and fell asleep. So I went on to work. I got a phone call from her nurse that she had to have the tube put back down her throat to help her breath. They think her lung collapsed and that she has pneumonia. She is out of the cardiac ICU but still in ICU.
I just see how much weight she has lost and how different she looks I just hope she has the strength to fight all of this off. I will be back at the hospital in a little while and will know more then. TTFN

Pics from Peanut's room

Peanut's doing Great!!!

Just got off the phone with the nurse......Maddie is doing Great!!! You could hear her cooing in the background. They changed her oxygen assistance and down graded it. She took her first form of nourishment today to get her back eating. She loved it and wanted more. She got a little upset when she could only have a little. Because of the lack of blood flow to her lower organs, kidney's, intestines, etc they have to go slow. Now that she has the proper blood flow to those organs they need to make sure they are working. It is a big shock to her system now that they are working again.

Maddie hasn't been wanting to sleep and I having been dying to hold her I finally asked the nurse. I was supposed to leave the hospital at 4:30 to be home for dinner with Katie and Jack. I was late because I was holding Maddie. I have been waiting 5 days to hold her. The nursing staff is absolutely incredible and I wonder how they can do their job. Some of these babies are so sick and they just spend their day loving all over them. Every nurse in the cardiac ward that comes into Maddie's room says she is the cutest baby in the ward. Of course we already knew that. Hopefully, Maddie will be in the progressive care ward by Wednesday. We'll see if she is ready.

We called the hospital three times tonight just to check on her because we needed to spend the evening with Katie and Jack. She is Great. I am going into the Hospital in the morning to be there when the doctors do their rounds so I can get an update. I have included a few photos. There are the views from her room at different parts of the day. Maddie during her physical therapy and a photo showing off her bow. She really is doing great considering this was a major surgery. Enjoy!!

TTFN

peanut's progress

Maddie is doing really good today. The doctors are very excited about her progress. They took her breathing tube out and put a device in her nose to help her lungs fully expand as she breathes. She is very responsive. When I talk to her, her heart rate and blood pressure go up. This is good because it means she is responding to me. She is also making good eye contact. Phil's mom is here spending time with Katie and Jack, his sister Jacque left today but she has been very helpful too.
Maddie has good color. Right now she looks like a baby elephant with the device in her nose helping her lungs. She has these wires coming out of her belly that the nurse called "jumper cables", I almost fell on the floor when she said that. They are hoping those will be removed Sunday. She still is not ready to take a bottle yet. She will stay in the PICU until she eats and they are comfortable with what she eats.
Thanks again for all the prayers and well wishes. We hope by Christmas this will all be a memory. Just so you know Katie and Jack are doing VERY well. This morning I let them make pictures for Maddie to hang on her crib. This can't see her untill she is out of the PICU. TTFN!!!

P.S. Bummer for the Irish, what a loss in quadruple over time!!!!

More on Peanut....

Maddie had a good night her blood pressure is down where they want it to be. She was able to get a bath last night and they put a bow in her hair. Hopefully today I can get a picture. Phil stayed the night last night and said she was doing very well. They will leave the breathing tube in until at least tomorrow. I actually am glad about that. I believe she will be more stable if we wait. She stays in the PICU until she can take a few bottles and keep them down. Phil and I will be staying up there together tonight. I had a long talk with Katie and Jack. They know they can not see her yet but that the doctors have fixed her heart. A long day is about to begin, Jack needs a hair cut before the pound comes to get him and we need groceries. I will keep you posted as we know more. TTFN