Happy New Year and an update on Megan

Well, it's been a tough couple of weeks at house. Starting out, I had the flu. Then Stacy got the flu. We were so scared that Megan would get it, but she didn't. So, after spending a couple of weeks being sick and working from home, I'm back. I want to wish you all a Happy New Year, and I pray that all of you have as great a year, this year, as I had last year. Now you may say to yourself "But JR, what about all of the troubles and setbacks you suffered?" I have only a one answer for that. Yes, we may have had some setbacks, but God is in control of all of this. Megan is His precious gift to us, so we give praise for that everyday. No use being sorrowful all the time and groaning about it, it won't really help. We pray that she will have a good day, each day and leave it in His hands. That's not to say I don't get depressed sometimes (as you will see from the latest update below), but I know I have people I can lean on for support (Yes, I am talking about you fine people here at 2old2play!!! :) ) Take care everyone.

Happy New Year everyone! Well, it is just a little after midnight and Jim and I are waiting to see if Megan is going to be able to make it through another feeding. I am down here in my office working, too terrified to go to bed right now, with the baby monitor turned all the way up just in case. That is they way the past few days have been for us. Megan has been choking so bad that each time you are really not sure if she can recover. Honestly, last night, we were both very terrified that we would be calling an ambulance. I will start from a couple of days ago. It seems for a week now Megan has been on and off fighting a virus of some sort. Friday I noticed that she seemed a bit more congested than normal. It was about 3:30 in the afternoon and I was holding her and she seemed that she just wasn’t feeling good. I told Jim she seemed to be panting when she was breathing. I don’t get too panicked but this concerned me. I called her doctor and he said to bring her in so they could look at her. When I took her in her fever was back up to 102.5 and she was literally panting like a little puppy would. She didn’t have much energy to do anything. He listened to her and said that they needed to suction her out. They stuck a tube down her throat and through both nostrils to try and help. It turned out she had a ton of yuck trapped down her throat and she could barely breathe. The stuff that came out of her literally almost made me gag. She cried horrifically and all I could do was just hold her down. He took some blood and he said that she had caught a bacterial infection that was probably just a cold but, once again, because of her weight and immune system she couldn’t fight it off. He prescribed more medicines for her and thankfully I was able to take her home. By the time we got home she seemed to be feeling much better and we thought that was the worst of it but man were we wrong. In the middle of the night I was in her bedroom changing out her ice pack for her feeding bag and giving her the medicines she needed through her tube. As I was getting ready to walk out of the room, I heard her cough. As I turned to walk back to her bed the coughing got worse and worse until she was choking. Jim came running in the room and just then she threw-up. We were pretty sure it was everything she had in the past 4 hours at least. It took a very long time to get her to calm down after that because as you can imagine that took a lot out of her. We ended up having to take her off her feeds for a while to try and help her belly calm down. She finally went back to bed and seemed to somewhat rest a little. When she woke up though, she seemed, once again, like she was feeling much better. It was pretty much on and off all day. Once minute she would be feeling just fine and the next minute she could hardly lift her head. Then last night, at almost the same time, she started coughing again. Jim and I instantly jumped out of bed (we sleep very lightly every since we have had Megan) and went in to check on her. She was choking again, and I am not even kidding you, this was the worst we have ever seen her choke. It was horrible! She was on her hands and knees barely able to lift herself up. I picked her up and tried so hard to help her get it out. We felt so very helpless. I just can’t even begin to describe to you how it was watching her choke like that and I honestly thought we were going to have to call an ambulance. She finally threw-up out of her mouth and nose most of what she was choking on but it didn’t stop there. For at least 45 minutes she was coughing and choking and still trying to throw up. All she could do was just lie there and try as hard as she could to cough even though it hurt her so bad. We were so upset, not at her, but at watching her go through this. I just kept thinking to myself, it’s just not fair!!! Please, God take this away from her! I can’t stand to watch her suffer like this and she doesn’t even know why. As I sat there with her on my chest, gently rubbing her back to try and help calm her, I just kept thinking, Lord please calm her little body down. It was so bad that I even said Please don’t die in my arms. I started to calm down and I just sat there with her trying not to say a word so that she could feel my heart beating. She finally started to calm down. Now normally our boys can sleep through anything but this episode woke both of them up crying. So they came in our room and we all piled in our bed. I have to tell you that it was awesome. I was holding Megan, Jimmie was next to me and Ian-Thomas next to him and then Jim. We were all just lying there together. The whole family, there together to help comfort Megan. Finally at about 7:00 this morning we all went back to sleep for a little bit. I went and laid Megan back down and as I started to lay her down, I looked down at her and watched her as she could barely open her eyes and I had horrible flash backs of when she was put in the hospital last time because she passed out in my arms. But as she looked at me, barely able to lift her eye lids, she gave me a little smile. I just thanked God. Please help her rest peacefully. Today was another on and off day. She is having pretty bad potty from the medicines I think, so I am getting lots of use out of all her pretty little clothes as we seem to have to change her a few times a day. I am praying that tomorrow will be a little better for her. Tuesday morning she will go in for her replacement tube. I am praying for a smooth transition but I realize it is going to hurt her. I was thinking this evening about it and as the day gets closer I would give anything for her not to have to go through with it. I just don’t want her to have to endure any more pain. Her little body goes through so much as it is but I know that her tube needs to be replaced. I am afraid of how much she is going to weigh when we take her on Tuesday because of all the choking and throwing up she has done. When I took her in on Wednesday for her weight check she had lost another 3 ounces. She is now below 13 pounds again. I looked at her nurse and my eyes just filled with tears. She is so little and I just want a few ounces. Unfortunately a few ounces wouldn’t make much difference right now. She needs much more than that to help. Her GI doctor wanted to up her 24 hour drips by 5 ml per hour but she couldn’t handle it so we had to take her back down to 40ml per hour. Right now she is resting comfortably and I pray that she will have a good nights rest because her energy is going down pretty fast. I am so thankful that God is there resting with her. It makes everything seem very peaceful. Our oldest son, Jimmie, had one of Megan’s baby dolls yesterday. He was walking around carrying it and he said that he was taking care of his baby. He then put the baby in the bouncy seat and pretended to hook the baby up to a feeding machine. It broke my heart that he thinks that is what a baby has to do but in the same respect, it also made me want to hug him to pieces knowing that he really cares that much and pays that much attention. It’s like it was nothing at all to him. Every day they ask if we are going to the doctor for Megan. That is what their life has become, it seems like, but I am so thankful to God that they have adjusted to it so well. They really are some wonderful boys and are wonderful with Megan.

 

I am not sure if I have ever shared this with you all or not. But the last time Megan was put in the hospital, I had both of the boys with me. We get to the hospital and Jimmie, Ian-Thomas and I are just sitting in the room looking at Megan lying in her bed waiting for Jim to get there. I am sitting there still trying to get over what had just happened at the doctor and I hear this singing. I look over and it is Jimmie. He has his little hand through the bars of Megan’s bed holding her hand. She is just laying there staring at him. At first I could barely make out what he was singing but as I got closer, my eyes filled with tears. His sweet little voice was singing lyrics to a Veggie Tales song called “Think of Me” and this is what he was singing in the softest sweetest little voice I have ever heard. This is what he was singing over and over:

Think of me everyday,

Hold tight to what I say,

And I’ll be close to you,

Even from far away.

Know that wherever you are,

It is never too far,

If you think of me, I’ll be with you.

 

I break down every time I think of that very special moment. It’s funny because when I am scared or upset that always comes to mind. Isn’t it funny how God takes a child and reminds us that He is always right there with us no matter what? I am so thankful for that. What a peace! Enjoy your children; they are such a wonderful gift from God! Happy New Year and we love you all! God Bless!

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JR