Wednesday, July 25, 2007


I have been doing lots of thinking. Well, I actually do thinking all of the time, and I am sure I "over think" most of the time. Sometimes I have to wonder why I have been put in this position with Tommy. I have my boo-hoo moments. I have temper tantrums too. Sometimes the pressure valve just needs releasing. I guess I can't help feeling sorry for myself every now and then.

Two days ago was a bad day. It took us long time to pack up Tommy's equipment and load our van for the drive home Monday night. I was tired, hungry and hot. Rob had been home by himself all week and I had been expecting him to finish Tommy's room. In a week's time, he hadn't even taken out the trash, much less worked on the room! I started a nice little fight. Sat around with my underwear in a knot for an hour or so, finally ate my dinner and calmed down. He hadn't done anything wrong. The reality is he worked overtime all week and had not had a chance to do anything. We get over stuff like that pretty quickly. See? Pressure valve.

Then I have a day like today that puts my life into perspective. This is what it is all about. I woke up this morning...okay, it was noon and the phone was ringing, but I was up until about 3 a.m. I am now stressing out that it is noon, Tommy is still sleeping, Matthew is watching a movie, very loud, and Brandon is trying to sneak a jar of peanut butter to his room. I snatch the pb, yell for Matthew to turn down his movie, and look at Tommy. I KNOW what he has waiting for me...exploded diaper...but he's sleeping, so I let him. I figure it's already a mess, why deal with a mess and an cranky baby!

About 30 minutes later, he awakens on his own with a gorgeous smile on his face and a smell coming from his bed that lets me know it's going to be a fun day! As I start to undress him (with Matthew and Brandon running laps through the house), the phone rings! Get Tommy to the floor on a blanket, completely naked, there's the phone again! Repeat this about 6 times in less than 20 minutes as I am trying to bathe and dress Tommy without being peed on or letting him yank out his Gtube like a ripcord. Success! We move on to trach care, then I give him all of his meds. I am trying so hard not to get stressed out by this time, because his meds schedule is out of whack, he hasn't been fed yet, and it's now going on 2 p.m.! It takes such a long time to just get him out of bed in the mornings!

I finally have a clean, dressed, content baby on his blanket. I get his feeding pump primed and start to add the formula and it occurs to me that I don't actually have to "feed" him-the pump does. No "whoa is me" moment that Tommy can't take a bottle. No "he will never breastfeed" flashbacks. I am suddenly overjoyed after the morning (afternoon) that I have had, that I DON'T HAVE TO WASH BABY BOTTLES!!! I am suddenly tickled pink that I don't have to hold a bottle for him, burp him, or worry about him being fussy over a gassy tummy.

Sure Tommy is hard work! Sure my house looks like a cross between a hospital and a zoo. But look at him! He just takes it all in stride. He gets excited to see his feeding pump the way another child would for a bottle. He knows how he gets fed, and the only one that knows the difference is me. No more yelling at hubby over stupid stuff (this week). No more freaking out about missing his Reglan. No more worrying he won't get enough calories today. Why? Because the entire time I was stressing out, he was laughing at me. When I walk past him, he grabs my legs. He loves me just the cranky way I am, and all of that other little stuff just seemed to melt away. How can I not just melt when I see this face.


Valerie said...

Sweet baby. I can remember all too clearly how it was in the beginning, a child with CHD, achild who is not supposed to make it and then a child who does and now is 21-years old.

Thinking about you and your precious baby.


Awesome Mom said...

Things to start to change as you get used to the idea that you have a kid with health issues. The first year was the worst with Evan. The only thing that kept me sane was Evan's cute little smile.

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries