Friday, January 27, 2006

Wednesday, January 25, 2006

I just wanted to add a couple more photos (now that I know how to do it, it's easy!) and let everybody know that Theo is doing ok. He was a little fussier than normal yesterday, but he is doing better today. We had to go to the hospital Monday to have some more of that granulated tissue removed, but he did fine. I think it might come back though, it looks a little pink around there already. He may be prone to that stuff--he had some of it back when his cord fell off and he had to have the silver nitrate on his belly button (the real one, not the surgically placed one).

That seems like a lifetime ago. It is so hard to believe so much has happened to him--and to us--in his short little life. I have never had any surgery at all and my 8 month old baby has already gone through 7 surgeries. Tumor resection, ventriculostomy twice, shunt placement, central line placements in his femoral artery and in his chest, gastrostomy. There are days when all of this feels like it's just crashing down on me--weighing me down. So many of you write me and post comments about how strong I am and how wonderfully I handle all of this--and even though I can't tell you how much I appreciate your comments, they really do help me feel better-- it doesn't feel like that to me. We both just try to get through each day as best we can and give him the best love and care we can. There are days when I feel very fragile, when I feel like crying at every little thing, days when little things really bother me and all of a sudden I will feel cosumed by anger or sadness. Days when I feel self-pity--which I try hard to avoid, but I know it's inevitable. It's normal to feel that way. A normal way of dealing with loss. But there are times that I can't seem to avoid it and I slip into that feeling that life is so unfair and I want to stomp my foot and cry and scream. There are times when I am in a place with lots of families and children--and I don't mean places like DisneyWorld or even a playground--normal places like the mall or Target or the grocery store on a weekend--and I find myself wondering at the sheer number of healthy children --and at those times it seems they're everywhere!--all these healthy children all over the place who don't have brain tumors, how did my child happened to be the one in 30,000,000 (that's thirty million) who does? And please don't think that I would wish it on any of those children, I wouldn't, but I can't deny that feeling that I wish it had not been mine. Especially when I see babies around his age, sitting up, sucking on their hands or anything else they can get in their mouths, looking all around, jabbering on in their baby talk--I just can't help but think "that's what Theo would be doing now". He was so bright and alert and already studying our faces, making vowel sounds "ooo ooo ooo" "Oh oh oh" back at me. He would probably be saying words now! And now we have this new baby who we love and cherish who doesn't do those things, but is sweeter than anything else in the universe and who spends all his time teaching us how to love him better, helping us to keep our hearts open even as they break and we do that just because of him. I know in his short time on this earth he has touched more lives than many of us do in a whole long lifetime of decades upon decades. But it still doesn't keep me from desperately wishing that this had never happened.

Anyway--please continue to keep us in your hearts.
Love from all of us--

Wednesday, January 18, 2006

More photos....

A few more pictures......

These photos were taken by Patricia Lyons, a wonderful Richmond photographer who graciously donates her time and talent to create family potraits for families receiving services from Noah's Children. She came to our house to take the photos a couple weeks ago. We are really happy with the pictures and so thankful that she has done such a wonderful thing --for us and other families. We didn't have any pictures of the three of us--except for when I was pregnant (!) and that's not quite the same thing. Here are just a few of the beautiful photos. We have so many to choose from it was hard for me to decide which ones to get printed.

Wednesday, January 11, 2006


Today we went to get the button placed in Theo's belly. Our nurse practioner Nancy came in and asked if we had the kit and we didn't know what she was talking about. She had ordered the button placement kit from our home health providers and they were supposed to have brought it to our house and we were supposed to bring it to the hospital with us today so it could be put in. They didn't have one for us there at the hospital. We hadn't heard anything about it and didn't have any idea this was what was supposed to happen. Had we known, I would've called the home health people and made sure we had what we needed. Nobody contacted us about it. I thought we were going to have to leave and come back another time. None of this made any sense to me at all considering we were in a HOSPITAL and not just any hospital but a huge, highly renowned TEACHING hospital that has EVERYTHING. But Nancy went and searched and was able to find us a kit that had the right size for Theo and everything was ok. I think I might just have lost my mind if we had had to leave without getting his button in today. Anyway--he did pretty well. He cried a little bit when the old one came out and she cleaned all around it and the tissue. I couldn't do it myself. She wanted one of us to put it in and I thought that I would be able to do it, but I just couldn't. After pulling out the tube that had been in since December 19--A big red hole was left, you could see straight down into the stomach. It was a really strange and a kind of sick and sad feeling to see an open hole all the way down to your baby's tummy. And then to have to try and put the apparatus in yourself...After the day that I had to replace Theo's ng tube (in his nose)at home when the prevacid clogged it up and he sneezed blood and screamed and screamed, even though I had done it several times prior to that incident, I have been barely able to do hold it together to do those kinds of things. I just can't stand thinking I'm hurting him in any way. I can barely stand to take his tape off.
Since we have had the old tube, the worst part was changing the dressing and taking the tape off (he hates that), but the thing always looked like it was about to slide right out of him and appeared to be hanging by a thread, which, literally, it was being sewn on with only one stitch keeping it in place. It made me so nervous and scared to try to replace the tape after a bath or to try to push the tube back in when it was pooching out a little (when he would cry or scrunch up his abdominal muscles--or when he accidentally pulled the tube with his arm). So, anyway, I tried to put the button in, tried to be cool about it and perfom the procedure that I may have to do at home if something happens, but by that time, the hole was more irritated--or the stoma which is what the medical term for the opening is called; any outside opening leading into an organ--It was bleeding from being moved around and irritated, and he had granulated tissue around the opening which is this raw meaty looking tissue that forms around the tube when the body is not happy about the foreign object inside it. Apparently this granulated tissue can be very painful. Nancy put silver nitrate on it to kill the blood supply to it and it will eventually fall off, and then after all that, I was supposed to push this button thing into his belly. I tried, but it seemed to require an awful lot of pressure to get it in there and I was afraid I would hurt him and I just couldn't do it. Nancy did it for me. She said that most of the time the buttons stay in for 3 to 4 months. If we need a new one put in, our home health nurse Donna will, I'm sure, be able to help because I just don't think I can do it. Maybe I could, once it heals up better. But while the concept is kind of like changing an earring, like I mentioned before, it's nowhere near that easy. And the emotional strain is obviously nothing like changing an earring.

There are many days when I feel pretty good. When I feel that I am handling all this very well--his feedings, his dressing changes, his acid reflux gagging (which is way better, but does still happen sometimes), the invisible tumor, the overall situation. I've made arrangements and plans for his funeral service, what the program will be like, poems we want read, music to be played, his Theo celebration DVD, the balloons came today for the balloon release I want to do---all these heartbreaking details that are day to day life for me--I think I deal with it all as best I can without too much self-pity or even an excess of grief or pain. I want to be as much a part of his leaving as I was in his coming and his being and if I have to face these things, I feel fortunate to be able to put thought into them and do my best to do all of it out of love for Theo. But there are little things that get to me, when I am not expecting it. That creep up and clench my stomach, reminding me of how terrible everythign really is. I could never maintain that level of hurt all the time, so when it shoots back, it always surprises me. Like today with the button---I just couldn't do it. And seeing him there on the table with a hole in his belly and this foreign button device half sticking out of him and me trying to push it into his soft baby belly--I just couldn't do it. I felt this big vise around my heart squeezing and squeezing and I couldn't stop thinking "My baby has a hole in his stomach. He has a hole in his stomach and it hurts him", not to mention the tumor in his head and I just wanted to cry. I only cried a little bit though. I was ok. I didn't want to lose it in the hospital. Nancy was really helpful and helped me to understand that it is nothing like normal to have to have a tube in your baby's stomach and there is nothing wrong with feeling upset and sad. And she's right. None of this is normal and I'm not supposed to feel normal. It's normal not to feel normal.

I got really nervous again when it was time to feed him once we got home and I couldn't get the lock-on tube to hook on properly. The button has a little flap that pops off and then the tube has a piece that fits into the button hole and then it turns to lock. Then you can safely put the food or medicine down the tube and into the belly. When he's finished, you twist the tube back to the unlock spot and lift it off. I felt worried the whole thing was going to pop out or I would hurt him twisting things on and off. I had to take an ativan to calm down. I got him fed though. Jamie is already fine with it. He is much better at those technical things, the equipment, the med doses and times, he's never off schedule. It's a good thing too--I need him to help me feel better about it.

Speaking of Jamie, tomorrow is his birthday and we are going to spend the day together, all three of us. We are going to pick up Theo's finished DVD tomorrow morning so that will be a really great treat to see it finished. We are planning to go out to dinner tomorrow night and my dad and Jennifer are coming over to babysit Theo.

Again, I want to thank everyone who has written encouraging comments and emails to me. Hearing from others and knowing you are thinking of us and praying always helps me to feel not so alone. Thank you--

I'll keep you updated. The next major thing is his MRI coming up on February 11th to check in on the growth of the tumor and see where we are.


Sunday, January 01, 2006