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.

Thursday, July 19, 2007

Guardian Angel

I have a Guardian Angel. She is such a blessing! I will not tell her name, but I will tell what she has done. If anyone figures out who they she may be, please don't let her know I am bragging on her. Never having met me before, only knowing me from a support group I belong to, she took the time to drive to my town and sit with me while Tommy had heart surgery. That day, she bought all of my meals, then gave me an additional $50 just to help out. She also drove me home from the hospital so I could drop off some of my things since Tommy would not have a room for a few more days.

She is trying to get someone to fix my central air for me. She also called a geneticist about Tommy to try to get him seen as soon as possible. On top of all of this, she bought us a new, much bigger window unit air conditioner so that we will be more comfortable until we can get our central air unit running.

I don't even know how to thank her for all she has done. I have said thank you until I am blue, and it never seems like enough. She just laughs it off and says it's no big deal--and means it! She lives too far away to just stop by. As a matter of fact, I don't even know where she lives, just the town. I am so grateful to her and her generosity. I am so happy she is my friend.

Monday, July 16, 2007

74 Year Old Congenital Heart Defect Survivor

Two blogs in one day! This felt important to me. My grandmother was born with a Congenital Heart Defect. Atrial Septal Defect. A hole in her heart. It was bad enough to warrant surgery when she was a young mother. My mother, her daughter, told me growing up that my grandmother distanced herself emotionally from my mom because back then, when you had heart surgery, well, sometimes you didn't get to come home. But she did. I had seen her scar in the summer many times when she wore tank tops. It was just "mamaw", I never questioned why she had surgery.

In my mind, grown ups have heart surgery all the time. Like my papaw had bypass...that sort of thing. I only found out a month ago that she had been born with a heart defect. It hit me right in the gut. I have heard chatter that heart defects can be genetically linked. I don't know if that is our family's case. What I DO wish is that there was enough awareness out there to have warned me it was a possibility! There are posters in the OB's office for Spina Bifida, and Down's Syndrome. Both of which are very real diseases, but Heart Defects? Sorry, I must have missed that poster, because the very first time I ever heard of Congenital Heart Defects was the second the ultrasound found Tommy's. Sure, I had heard of "baby born with hole in heart" stories, and "heart murmurs". I was always told that the holes close up, the murmurs go away...Nobody ever mentioned babies DIE!

So here is a HUGE, HUGE accomplishment in the world of Congenital Heart Defects. A 74 year old survivor. Not only of the defect itself, but surgery at a time when it was so unsuccessful that my grandmother chose to keep herself at a distance from her children out of the fear they may not have a mommy once she got on that table. She is a very tough lady. I get a lot of my strength from her example. She is a strong woman. A survivor of things at one time unsurvivable. My Mamaw Winnie.

Sunday, July 15, 2007

Borrowing Air!

I found my house! And then I had to leave it! We are still without central air, and here in Charleston, we are having a nice, hot summer. Our mobile home park cut down the trees outside of our house saying they were dead. I couldn't tell either way, so since they aren't technically MY trees, I can't do anything or complain to anybody. It makes me angry because we specifically picked the lot for the trees. Our trailer has an aluminum room and aluminum siding, so it's just like sticking us in an oven with the sun beating down. We also discovered that we don't have ceiling ventilation. So, yeah. It's hot in there. We tried putting up a blanket over our hallway and keep the air conditioner we do have in just one room. We also had 4 fans going in that room, and it still didn't help any. Our thermostat at one point behind the blanket read 105!

So we packed up all of Tommy's gear. Oh my gosh, what a nightmare! Oxygen concentrator, compressor, IV pole, trach supplies, clothes, various machines, not to mention what I needed for Matthew and Brandon. It took two hours to pack it all up into our van, but once we got to our friend's house, ahhhh, the air was so worth it! We have applied for emergency assistance to have the central air fixed. Hopefully I am going to get a call tomorrow to tell me they are coming! I have Vonage for a home phone, so if anybody calls, it shows up in my email when they leave me a message. I have my cell with me, so I just return the call. The only bad thing is where we are staying is 30 miles away, and I have no transportation back. Rob has to use our van for work, and my friends have appointments this week. Honestly, I don't care, I will figure it out if they call!

So here we are, in the air conditioning. Tommy is comfortable finally, and I don't have to worry about him getting sick from the heat. In the meantime, I can't stay here forever, so PRAY for our air to get fixed and I can go home and get back on a routine.

Wednesday, July 11, 2007

Where Did My House Go????

Tomorrow marks one week we have been home from the hospital. It has not been an easy journey. First of all, this oxygen concentrator is huge! Then there is the fact he must be tethered to it day and night! Because he is so little, and has a trach, he has to be attached to a humidifier. He has about 8 feet of hose, because if he had it any longer, he would be losing his humidity.

He used to sleep in my room, right next to my bed, but because we live in a single wide mobile home (my little tin box), basically, his bedroom is now our living room. Mine too. I now sleep on the couch. We are trying to convert the bathroom right next to our room into Rob's office, then the old office will be Tommy's new room. This is easier said than done! Hopefully we can get it all finished by the end of the month. Then, I can put his humidifier on a rolling cart and move him back and forth at night and in the morning. Oh, the new room is just off of the living room, so it would be perfect. Just a TON of work. As of right now, all of his medical equipment, bed, swing, supplies, EVERYTHING is piled up in the living room! We basically have a little path from one side of the room to the other.

Well, Tommy is now making noises to be fed and changed, so duty calls!

Diagram of Tommy's Heart Defects

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