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.

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.

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!

Pink, Awake, and Extubated Only 24 Hours After Heart Surgery!!!

Tiny Heart, Tremendous Miracles...

I don't like roller coasters, but the Universe has seen fit that I ride one this week against my will! Yes, Tommy has lung disease, and the fact of the matter was he was dying right before my very eyes. Rob and I started making arrangements....Then last night, his surgeon pops into our room and announces we are going in for surgery in the morning! He attempted to reconstruct Tommy's heart, but it would have been too much pressure on his little body, so he just upsized his shunt. It is just a band-aid, but at least I can stop with the dreaded "what if" death questions in my head! Now we have time to address his lung disease. Don't know what that is going to entail, but whatever it takes to keep my baby well. He will most likely be on oxygen long term....and I will be housebound....

So now, my baby boy is pink from head to toe. He is so beautiful. My life, my world, my heart, my soul all exsist in his tiny life. I never thought I would be happy to say Tommy had heart surgery today and I was thrilled all day long!

Pray For Tommy

Where do I begin? Grab some tissues. Hug your kids a little tighter. The cath was bad. Just devastating. It took the cath to tell us that Tommy was born with lung disease. We were all unaware. His shunt is closing and we don't have much time left. We are no longer good candidates for his repair. The pressure in his lungs is too high from the lung disease, and the operation would kill him. He is on 40% oxygen and his oxygen saturation levels hover in the 60's to 80's.

We can wait a few months to see if the pressures go down, but in that time, his shunt is closing up on him. We can try to upsize the shunt, but we are afraid the new blood flow would raise the pressure to an unsafe level and he would die anyway. Grim, grim, grim. I am watching my baby die. His doctor has gone over his results again, and has not let us know what he has decided. It is too tough a call, even for this skilled, gifted surgeon.

We were told the shunt has a month to 3 months left before it closes. There isn't a way to reopen it, just to put in a new one. If his lungs can tolerate upsizing, then we can do that and he will be on oxygen for 6 months to a year, praying they heal enough to proceed with the Glenn. He is in the pediatric cardiac ICU unit at MUSC in Charleston. Don't know for how long. If there is nothing more that can be done, we may end up home next week to play the "wait and see" game. But what if his shunt closes here at home, and he has a heart attack and dies in front of me? NO! I just want my baby well!

I have fought too damn hard for him! I prayed for a new baby, I planned for him! I want him! I came home for a night to shower and sleep in a bed, and I find myself crying, fighting sleep because he is not here. His presence is everywhere I look, and yet, the house is so empty. His Glenn was supposed to be a happy surgery. Stage two in a three stage repair. Road to recovery. I feel so cheated, robbed, my family violated by these terrible diseases wracking his little body! Why, oh why did Rob and I have to make decisions about his death tonight when he is still alive?

My tears have only begun to fall. By the time I have cried my last tear, this world will be awash in my sorrow. Please pray for my baby. Pray for a miracle, for the doctors to make the right decisions. Pray for time. Pray my little ones life will be long, full and joyous. Pray he will be a grandpa someday. Pray for my sanity. Pray for Tommy.

Heart Catheterization on Monday....And Scared To Pieces!

I wrote the following on a messageboard I belong to called Mommysavers. I didn't mean for it to be so emotional, but it ended up that way anyhow. After I read over it, I realized it says exactly how I felt. Here is what I wrote:

The time has come for Tommy's first heart catheterization on Monday and I am nervous. I know this is a routine procedure, but I am worried the trach will complicate things. I am also worried about the outcome itself. His sats (amount of oxygen in his blood) have been dropping slowly as expected, and he looks more blue every day. He also gets tired faster. He used to be go, go, go with his therapists and now he spends a lot more time resting.

This cath is going to tell us how long we have (or don't have) until open heart surgery. To be honest, the first time he went through this, it was nowhere near as scary. He was a preemie newborn, and I was in shock he was even here, much less going through surgery. When he has his cath Monday, it will be 8 months to the day since his last surgery. I have had 8 long months to get to know him, bond with him, love him, watch him meet difficult milestones. I know in my head that surgery is coming. I knew before he was born we would go through this 3 times before he is "repaired". But now that the time is drawing near, I just want to wish it all away. I don't know if I can stand the look in his eyes when he comes out of the sedatives after surgery and he wants to know in own tiny way, why he has to go through this!

I get so disgusted with the universe. Tommy was a planned, wanted, and anticipated pregnancy! I took care of myself before and after I found out I was pregnant. I know, the doctors all say it's not my fault, that 1 in every 100 babies will have a heart defect. So why my baby? Why did I have to join the club against my will? I keep getting knots in my stomach knowing surgery is coming, and yet knowing it's the only thing that will make him well. And it all starts on Monday....