Happy Birthday Baby Girl….

From this gorgeous baby…

To this wonderful little blue eyed girl that always lights up my day…

With an awesome personality only you can have…

You taught me to chill out and play and enjoy life even if you have to get dirty sometimes…..

We all love you baby girl!!! Today is your day and we are gonna have a rockin great time!!!!

Happy Birthday!!!!!

Love, Mommy, Daddy, Ashley, Timmy, Harley, Stacey, Katie, Johnathan, and Tori!!!!!

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Most special memory….

Johnathan was born August 29th. Because of his severe prematurity I didn’t get to hold him for more than two minutes while they changed his incubator. And even then, it was under heat lamps and he was all bundled up and plus someone was always bagging him because they had to unhook the ventilator, while those times were awesome. And you wouldn’t believe how heavy a 2lb baby is with all that stuff on him! I finally got to actually hold him for a half an hour. On October 22, the nurse told me to go take off my shirt and put on a gown, that we were going to do Kangaroo care. This is where you and the baby have skin to skin contact. I was so excited but, so, very very scared. I mean, hey, the ventilator scared the beans out of me. But, I did as I was told and sat down and Oh my goodness, the emotions that attacked me at that moment when he was finally in my arms. He was a little cranky at first from being moved. He really didn’t like to be moved and touched in those early days. But, when he realized that his momma had him, he relaxed, his stats were awesome and he just slept this really peaceful sleep. He wasn’t agitated or anything. Even with the cameras going off. They are awesome up there they make sure that they record every milestone that they can and even just because they think something is cute and want to take a picture for the parents.

But, I can’t tell you how awesome it was. Words can’t describe what it felt like to have my baby boy in my arms for the first time and to be able to keep him there. We found out later that I wasn’t supposed to hold him because he was on Dopamine, but, Carrie, the nurse, argued with them because he was Dopamine for his kidney’s and not his blood pressure. At least this time he wasn’t. But, all was good and we had an awesome bonding time. The nurses fought for us a lot and they were always there when we needed them. And they were also our confidants and our family. I can’t say enough about them. When they are on your side watch out doctor’s!

Here is a pic from about that time: This was in Cincy right before his 2nd, heart surgery. About 3 days after I got to hold him he was transferred down there so that they could put a PDA banding on.

And this is just because I loved his smiles:

Christmas funny….

Stacy and I went up there to take some pictures of JT for Christmas. We dressed him up in his little Santa outfit. It was preemie size but, still, way to big. We had to tape the hat and pants on him. The tape is still on them too by the way. I was looking at his stuff the other day to see if there were some toys of his that Tori might like to play with, The ones that he didn’t play with all the time. And there it was with the tape still on it. I thought that was funny.

We put him on a blanket with the nativity scene on one side and the words to Amazing Grace on the other. I loved making that blanket. We now put it over the fireplace during Christmas. We had an awesome time taking pictures and while he didn’t look happy in the pictures he was. He looked like a grumpy old man, but, I think it was just the way we positioned him. We found out that day also that he could hold his head up on his own. What a great surprise!

Well, it had of course the furry white stuff on it and some of it got in his mouth. Well, I thought that I had gotten it out. Nope, when I got home that night, I called to check on him and Carrie his nurse said, hmmm, I think someone was dressing someone up as Santa and left some evidence. I was like huh??? She said there was white well, it wasn’t white anymore, fuzzy stuff in his ostomy. I guess I didn’t get it all after all. I was freaking out wondering if that would hurt him and she said no. She told me to just laugh about it. So, I have.

What makes this so special is because we thought that we would never make it to the point where he would be able to wear clothes much less let us play dress up.

We dressed him up and decorated his spot for every holiday. It was so much fun and created special memories for us. The girls would color him pictures, that we would hang there. We even printed out prayers and hymns that people sent us and posted them there. Just so that he could see them. We put his wish list up there too so that we could date everything as he did it.

Here is little man’s Christmas photo:

And another to show him holding up his head. I like to call this one: Just look over your shoulders, I’ll be there. Guess what song that came from. LOL If you look close enough you can even see some of it in his mouth right in the middle of his tongue. LOL.

11-27-2006

I woke up to the phone ringing. It was Children’s, I was so afraid to answer the phone. They never called unless it was something bad. So, I took a few breaths and just picked it up. It was the nurse, she was really excited. She told me JT had pulled out his vent!!! OMG, what???!!! I said, is he ok?? Yes, he is wonderful!!! He is breathing on his own, no oxygen at all. He decided it was time to get rid of it! She was excited as I was. He was 13 weeks old and had been on the vent since birth. And for him to come off of it with nothing at all??? No canulas no extra support, well, that was a miracle. I told her I would be there in 30-45 minutes. I ran through the house getting everything ready. Mikayla had just turned 2 at the time and probably thought that I was crazy. I poured a whole bunch of cereal in a zippy bag, filled her sippy cup up and we were on our way. I don’t think I even brushed anyone’s hair. LOL. When I got up there it was the most amazing thing to see my baby’s face. They hadn’t put the NG tube back in and there was absolutely nothing blocking his face. I could see all of it. I was so afraid to hold him, I didn’t want to forget this moment. Peggy practically pushed me down in the rocker and plopped him down in my arms. And I got to give him kisses all over his face and his sister did too. We spent most of the day into the afternoon up there. We read him books dressed him in different clothes a couple of times. Talked to the doctor’s who were as amazed as us, we had been talking about putting in a trach the day before. This is when we started seeing his personality, as in he took things into his own hands. When he was ready for something he was ready. Another significant thing he pulled out his vent on his due date. The date he was supposed to be born full term. All I could do was just stare at him and love on him and thank God for this special gift. Even writing this now, I still feel the joy and excitement and scared feelings I felt that day.

It is awesome to see miracles right before your eyes. The really big ones and the little ones. For someone not to believe that God doesn’t perform miracles in this day and age all they have to do is stop by a NICU and just look around. Real miracles happen there everyday. Whether it be a baby eating a bottle for the first time. A first smile at a parent, coming off of a medication that they weren’t supposed to, or going home when it seemed like that would never happen. Holding your 2lb baby and they look at you and just know who you are, and settling down into your chest and being at peace with the world. The love that happens there is just unexplainable.

Such an awesome memory.

Doncha know???

We all know JT died. But, do you know what??? He lived too. 8 1/2 months of life. 8 1/2 of the most heartwretching, frustrating, wonderful, awfully blessed, sometimes outrageous, loving, awesome months of my life. I have been looking back at the things that I have wrote about JT and most of them of course center around my grief and loosing him. But, I haven’t really lost him completely. He is living eternally in Heaven and we will all be together soon. Although it may not seem like it but, this lifetime we have is short, it may seem long but, in the end it is but, a blink of an eye.

When Tori was born, which she is going to be 5 whole big months tomorrow, I can’t believe it! She is getting so big and learning something new everyday. But, when she was born, I kept thinking she isn’t going to be with me long, I am not going to be able to take her home when I leave. Then I took her home. Then I thought this isn’t real. Something is going to happen. God doesn’t love me enough to let me keep her. I was centering in on her death. I have thought about this for the past weeks. How, I center in on death now, more than ever. I am afraid all my kids are gonna go somewhere and that will be the last time I see them. It is very frightening.

So, I was praying and asking God to lift this from my heart to take this fear from me. And then it hit me. Until I can stop centering in JT’s death, then death is going to be in my thoughts constantly. I think God hit me with that one. He has a habit of doing that. I can’t be told things gently, sometimes, you have to just bang me over the head with it.

I felt a great load off of my shoulders after that. It is great to just remember JT. Not the day he died but, the other days. The memories are still, so vivid. I haven’t forgotten them. All the funny things that happened. All the terrifying things that happened. But, more importantly, I remember my son, little ham that he was. With peace in his eyes and joy in his heart, because that is the only way that he knew how to be.

Over the next few days, I think I might write some memories of him. Because I want to and because this is the month of Thanksgiving and I want everyone to know how thankful I am to have had a son as awesome and precious as JT.

Have a great day everyone!!! God Bless!!!