Friday, June 29, 2007

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!

Thursday, June 28, 2007

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.

Sunday, June 24, 2007

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....

Saturday, June 23, 2007

Where Has My Mind Gone?

Oh my goodness, where has the week gone??? I am starting to get really scatterbrained lately. I cannot remember to do anything! I have let it slip my mind every day this week to get an estimate for repairing the A.C. and I keep forgetting to send in Matthew's homeschool report to our association! On top of that, I have misplaced my SSI mail for the month. Every month, I send in Rob's pay stubs, and then they send them back with a new envelope. I've lost the entire thing. I thought I had it, but my brain will not allow me to remember where I put it!

My sleep schedule is really out of whack too. I have to stay up until about 3 am to give Tommy his medicine and refill his feeding pump. Then I usually read to quiet my mind for about 30 minutes, so I am normally asleep by 4. Rob usually wakes me up at 6:30 to search for his clothes in the dryer while he takes a shower. I then go back to bed at 7 and set the alarm for 11. It's just so hard to get up when it goes off, but I don't have a choice--therapists will be knocking on my door twice a week around 12:30. I am still trying to figure out how I am going to get up at 6 am and function on Monday morning!

Speaking of Monday. I asked my friend if she could watch the boys so Rob wouldn't have to miss work. She flaked on me. She did volunteer her teenage daughter to come to my house, but that entails driving 30 miles to pick her up, 30 miles back, then do it all again to take her back. On top of that, she's a little bit of a troublemaker, but Mommy thinks her Baby can do NO wrong. (she has run away countless times, called DSS on her mom, lies, smokes, and is getting involved with an 18 year old boy in another state that she met playing XBox Live.) I had to be honest with my friend and tell her Rob didn't think it was a good idea to have her in the house. She acted shocked! I did the best I could and just told her Rob was being Rob. I also told her the truth, that Rob feels like if this girl is in our house, it's only a matter of time before we are being investigated by DSS as well. (my friend is dealing with accusations of domestic violence and child abuse charges that have been blown WAY out of proportion)

So now, Rob has to miss work, and we just can't afford it. I called my mother in law today to borrow money for gas to get us to the hospital on Monday. Ah well, we've been in worse places. We can finally meet our bills each month, there just isn't squat left over in the end! I think Rob is putting in for his raise, and he is working some overtime this weekend, so I am praying that will make up the difference of having to take the day off on Monday.

There is good news! I have managed to keep my living room looking nice all week. I am so happy with myself! Now I am off to find myself a little snack. I have been a good girl in that department, so I think a little something will be okay.

Thursday, June 21, 2007

I Fought My House And WON!

Well, it's been an impressive day! I attacked my house with a vengeance today and the results are stunning. I am so pleased with myself. I have been meaning to clean for weeks, but it has just been so hot and today we had a good bit of rain so it was nice and cool. I had just been piling stuff into a mountain on my love seat (and all around). It was ridiculous. I did a bit of creative rearranging and now it looks so much better. Oh, and I have a love seat again. It was mostly Tommy's medical supplies. I am always looking for places to put his stuff, and he just keeps getting more of it! I still have some tweaking to do. I am throwing a lot away, just because it's not doing me any good laying around. Like shoes Brandon outgrew 6 months ago. Why am I hanging onto those???

On a different note, my friend called me. SHE approached ME! I never said a word about how I felt, and I am just letting nature take it's course. If she sticks around, that would be great, but if she stays flaky, I am just going to let it go. I have too much stress in my life right now with Tommy's health, and dealing with the daily ins and outs of just having kids and a family. BUT, I must admit, it was nice to be in touch with her again.

Thursday, June 14, 2007

The Last One Has Gone....

I feel used and unappreciated. She has been my best friend since I was 13 and she was 12. We've been through babies, husbands, and cross country moves. She was there when I married Rob and held my hand when I gave birth to Tommy. Now, several months ago, nearly a year, her family was blown apart by allegations of abuse and her kids were sent to live with relatives. I say they are allegations because I have been to her house so much I know what goes on over there. I know her kids don't listen to her or her husband, and if anything the kids were running the house. Now they are jumping through DSS hoops.

So, back when I was pregnant, everything with us was great! Super supportive. She watched the boys whenever I needed to be in the hospital or at the hospital when Tommy was born. She stayed up half the night with me the day he had his heart surgery. So what went wrong? Around the time I brought Tommy home finally, our relationship took on a new dynamic. She has always been the Mother Hen type. Even though I am a few months older, she has always tried to mother me, just as she has every one else in this world. I have always been self sufficient and didn't really need the extra mom, but it made her happy, so I played weak to her strong.

Going through Tommy's health crisis has made me strong. So strong that I think she is threatened by who I have become. I don't know. When he came home, it was very important that he stick close to home because of the equipment he needs for sleeping. We used to spend the night at her house a lot, but now that isn't possible. We tried it once and it was such a hassle. Forget her coming over here. We live 30 minutes apart, and she can't afford the gasoline.

So now to my feeling of being used and unappreciated. I had heard nothing from her in two months. I emailed and got no reply. Then last weekend she calls me out of the blue with a "proposition". She missed me and would I come spend the weekend at her house? Wow. I was looking forward to this! She starts talking about how there isn't much in the cupboard, but we could come up with something. I am thinking her proposition is if I bring some food, she will cook. THEN she says if I come to her house, her kids can come visit. She is allowed supervised visitations and I could be the supervisor. It took me back a little, but I was feeling generous. She sees them every day, but this was a chance to have them spend the night and play with my boys.

Then her husband interrupts our phone conversation to tell her their case worker had vetoed the visit because it would be at their house and this was not allowed. She tells me no big deal, please come over anyway. I try to call her later that night to tell her Rob hasn't come home to run it by him yet, and she is in a bad mood. I guess she had some sort of falling out with her mother in law (who has the younger two kids). She never calls back. All weekend. Here it is on Thursday, and not a peep. So that's it. I can come over if it benefits her, but she really didn't want to see me. She wanted me to babysit the situation so she could bend the rules. At least that is how I feel. Rob now tells me he doesn't want me at their house because he doesn't want to get mixed up with DSS. I guess he feels like if we associate with them it makes us open to investigation as well. I think he is a little paranoid, but he is my husband and I am not going to choose her over him. I don't care how long we have been friends. If you can call it that these days.

I have no one left. My entire family is 600 miles away and my best friend is too wrapped up her own problems for me to lean on her. Rob can only take so much. So where does that leave me? I have made friends on the Internet, but none of them can swing by and visit. I am worried because I am going to need someone in a few weeks when Tommy has surgery, and there is not going to be anyone there. My only support system exists on the Internet. No human faces, nobody to hug or share laughs with.

How can she do this to me? I need her and she can't even hear me screaming for help.

Monday, June 11, 2007

Boring is Good!

I know I haven't been blogging much lately. Probably because life here is just plain boring. BORING IS GOOD! No major doctor appointments, no major events going on, just all of us doing our daily routine stuff. It's summer time and we are just relaxing. Tommy has learned to roll over 3/4 of the way onto his tummy. He props himself up on his arm so he doesn't have to lay flat. It's his new nap position!

Brandon just turned 4 and he is getting so talkative and smart. He has learned to hold up 4 fingers and is trying to sing all of his ABC's. He loves to watch Dora and Spongebob.

Matthew has started trying to earn an allowance. So far, he's not off to a very good start. He was doing great on his chores for about 15 minutes then he just lost all of his steam. I guess I am going to have to motivate him somehow!

Rob and I have decided we want to eat healthier, which means I am going to try to cook more meals at home. It's hard to fit in cooking with taking care of all three boys, but hopefully with Matthew's new allowance chores, the dishwasher will get loaded quicker. Pleh, I hate to cook when it's hot, but ya gotta do what ya gotta do. No more Wendy's and Taco Bell for us! I don't plan on trying to lose weight right away, just trying to eat better and work my way into it. I update as we progress through this!

Thursday, June 7, 2007

Conquering The Universe With Tummy Time!

My baby is fading fast...I can see it in his eyes...and yet, he still needs me like a baby would. He may have the body and skills of a 4 or 5 month old, but his mind is ancient! You can see the understanding in his eyes, even if his body can't respond. He drinks in everything around him. He is such a little ham! I remember not too long ago that he could not smile. Now, if I show him the camera and say "cheese", he will crack the biggest grin! Matthew and Brandon love to stick out their lower lip if they don't get their way. Tommy has copied them and will now try to make the same face!

Then there are the dreams...My first dream was about a month ago. I dreamed that Tommy was one year old. He had never sat up, rolled, crawled, stood, nothing. Then out of the blue, he stands up and starts walking around! Like he had observed all this time and just never needed to do those other things. My second dream I had last night. I dreamed I was on a bus (????), I picked him up and noticed his trach had fallen out and he was laughing at me. Are these my imagination running away with me, or premonition?

We have spent this last week accomplishing things we never thought we would see. Tommy taking a bite of sweet potato from my spoon Tuesday night. Him laying on his tummy and trying to get comfortable enough to doze off. Two weeks ago, he wouldn't even let us put him on his tummy, much less want to sleep that way! When he was born, we were told they just didn't know if he would ever swallow, and now I have to pick up a jar of baby food to give him at his speech appointment tomorrow!

I cherish every day with him! He kicked past every single roadblock the universe sets out there for him! I kinda get the feeling he's blowing raspberries while he does it...I get the feeling great things are ahead for that child!

Tuesday, June 5, 2007

MEN! Driving home from KY this weekend, we decided to stop in Gatlinberg, TN so my hubby and kids could see the General Lee from the Dukes of Hazzard. It's a free museum, so why not?? The problem is we should have turned around and headed for the highway instead of trying to take a "shortcut" through the Great Smokey Mountains. Although beautiful, it added 3 hours to our driving time. Some shortcut! Here is a view of what we saw.

The elevation dried out Tommy's trach, but he didn't seem to mind and laughed at us while we panicked for a second on what to do! (gave him some saline in his trach then drove down that mountain!)

It was a great road trip. We ended up in Cherokee, NC. Picked up some guide books and began home school lessons on the Cherokee Nation today. Matthew is loving it! Here is a look at what started our "adventure" to Gatlinburg!

Yes, that car is the Real Deal! It is one of the cars used for driving shots on the show. We got to see Rosco's sheriff car as well. Next time, we will plan the trip, take some extra time and cash with us and make a weekend out of Smokey Mountains!

Sunday, June 3, 2007

My Awesome Week!

So, the week has come to an end. We are about to leave KY. I have 3 more hours until we hit the road. I am supposed to be sleeping, but I have a feeling I will be sleeping more on the road than anything else. We introduced Tommy to every living relative on the PLANET (or so it feels). He has won everyone's hearts. We had a family reunion with Rob's family, one with mine, went to the Louisville Science center, saw Pirates of the Carribean 3 at a drive in, explored my hometown with my kids, looked for a family cemetary (that we didn't locate), hung out with old friends, and basically just had a blast the entire week!

I also found out that my mamaw has a congential heart defect that was repaired about 40 years ago! Having a time wrapping my mind around learning this now! Happy I know now, but still a little taken aback. Kinda like "lets wait until there's a kid born with a chd before we tell them there is a family history of heart defects". Or maybe she didn't know she should have shared with me sooner. Very mixed emotions here....

Diagram of Tommy's Heart Defects

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