Monday, June 30, 2008

CHD Book, take 2

Vanessa has entered the CHD Book in a contest. Please go check it out and VOTE! To vote, please click on the little "people" icon ("view on slideshare") at the bottom of the video and view it on the site. You can vote there.

Sunday, June 29, 2008


New Tommy. We love hearing his voice and he such a happy little guy all of the time. I love playing with him.

Friday, June 27, 2008

No More Homeschooling

We've come to the end of our school year. It's very sad because we've decided to send the boys back to traditional school next year. It's been a very tough year and we've not been able to keep up as well as we'd like. It's been very hard on all of us.

Matthew needs help with his handwriting. Brandon needs speech therapy and I've worn myself thin. We've tried so hard to make it work. I will miss having my family around me all day long. It will just be Tommy and me. I'm not sure what I'm going to do with myself yet. I am going to be sending off Matthew's paperwork for the end of the year this weekend. Then that will close this chapter in our lives.

I'm so SAD about it! I wanted to be "that" mom. The one that was hands on, homeschooling, completely involved with every aspect of their child's life. Watching plants grow together, creating stuff, learning together. Meshing our medical lives with our educational lives did not work as seamlessly as I had hoped. As a matter of fact, as Tommy has gotten older, he is MORE work and takes up even MORE of my time! Never did I think in a million years that he'd need this much constant attention. At this age, my other boys were content to sit in a playpen and play quietly. Not Tommy. Therapy, tube feedings, meds, doctors appointments, feeding therapy, exercise, 24/7 supervision not only for the trach but now the PMV.

I'm just tired. It's time for the next chapter in our lives. I hope we're making the right decision.

Monday, June 23, 2008

Tommy's Trach Popped Out!!!!

Holy Cow! I'm so excited right now, I could just scream! A few minutes ago, I needed a bathroom break, so like always, I called Matthew to the living room to keep a visual on Tommy. Tommy had on his PMV and was sitting in his exersaucer. On my way back down the hall, Matthew yells that Tommy got his PMV off by himself. Sure enough, I come into the room and there he is holding it in his hand examining it.

I walked over to him and he's smiling at me and shows it to me. Silly boy. So I go over to take it from him and start to put it back on him. Except I notice instead that his trach is sitting on his chest. It appeared to be in because his shirt collar hid it. Still Tommy is smiling at me. I did a quick nailbed check...still pink.

I slowly lift him out of the exersaucer and lay him on the ground. Still happy! I tell Matthew calmly that Tommy's trach is out and I need a new trach. Luckily, some arrived in the mail today and were a foot away. We didn't have time to find his neck roll, so I just gently lifted his shoulders with one hand and put in the trach with the other. Now he's mad!

I purposely went slow because I wanted to see what a nose breather looks like....and I must say, he's beautiful. So the trach is back in and I have all the confidence in the world that as soon as we get his tonsils out that he will be decanned (medical term for "trach out") very soon after. That date is July 25th. Tommy's trach was out total about 5 minutes and he did great!!!

Tuesday, June 17, 2008

Tommy Eating!

Tommy's speech therapist and I have been working on him taking a spoon. Here he is eating tastes of yogurt with blue food coloring so we can check for residuals in his trach. We've been suctioning him afterwards and he isn't having any residuals at all! Horray! Enjoy watching him eat!

Sunday, June 15, 2008

Tommy's Voice

My beautiful baby and his beautiful voice.

Saturday, June 14, 2008

All the latest on Tommy

Forgive me for being such a bad blogger! Life has had its ups and downs and I never seem to have a quiet second to post my thoughts anymore. Lots of news right now. We have full time nursing now! Hooray! Tommy's nurse, Kari, comes in 4 days a week from about 3-9pm. I'm so thankful to have her. It's been such a relief not to have to worry about changing him when I am in the middle of cleaning or trying to cook dinner. Plus I'm getting to spend a little bit more time with Matthew and Brandon. We're just now getting into the swing of things, and I'm hoping next week to be able to get more done around the house and to start having a little quiet time too.

Tommy had his follow up bronchoscopy after his tracheal reconstructive surgery. It is officially a success! He still needs his tonsils out, but other than that, he has the perfect airway. Of course, this is Tommy and nothing is easy. He's on 80% oxygen to maintain his sats. He's normally only on 35%. We feel the time has come to intervene with heart surgery in the near future. I think in the morning, we are going to start weaning him back down if he can tolerate it. I really hope we can go home tomorrow night and make plans for all of this instead of being thrown into chaos.

Today is going to be a fun day. In a couple of hours, Rob is bringing Matthew and Brandon to the hospital to stay the day with us. I plan to take them to the Children's Atrim so they can play and I can relax. The volunteers are holding a breakfast for the families as well, so this is going to feel like a party to them! I'm actually very excited about all of it. Just wish Tommy were stable and could come with us to the Atrium. Maybe next time...because knowing Tommy, there will always be a next time.

Wednesday, June 4, 2008

Brandon Is 5 Today!

My little monster actually made it to his next birthday alive! Seriously, he is another miracle baby. Everyone knows about my pregnancy and birth with Tommy, but Brandon was a difficult pregnancy as well. He was a planned baby and I got pregnant quickly (one month!). Matthew was in pre-K and I walked him to school every day. Then I'd go pick him up. My OB office was about a mile from my house as well, so I walked there too. I would take Matthew with me for most of the appointments and he'd listen to the baby's heartbeat with me. It was a very special time for us.

I started spotting about 8 weeks into the pregnancy and had to start taking it easy. I could no longer walk Matthew to school and had to pull him out. I was so tired and in pain that I could not do it any more. I looked so sick that a police officer actually pulled up beside me and asked if he could take me to the hospital one day right before I decided enough was enough!

At 20 weeks, we had gone grocery shopping. I was being careful, not lifting or straining. I squatted down to put something in the crisper in the fridge and hear "POP". I thought I wet myself but found out quickly I was bleeding full force. I lay down and put my feet up, but I didn't stop. We went to the emergency room and they were actually going to make me wait. I told the lady I could FEEL myself bleeding and I wasn't waiting! Since I was the "magical" 20 weeks I got to go to labor and delivery. Had I been less than that, I would have been sent to the ER to just miscarry.

Once I got to L/D, my doctor came and ordered an ultrasound. Baby was fine, but I had a very low placenta. (Placenta previa) His placenta was covering my cervix. Every move I made would squeeze the placenta like a sponge and I'd bleed. It was very dangerous for me to even be on my feet because the pressure from the baby made the condition worse. I was put on complete total bedrest. I was allowed up to go to the bathroom and shower for 15 minutes a day. That was IT. I used to cook dinner sitting down. We had a couch bed so that was permanently pulled out. Matthew and I would cuddle and watch tv all day. On my way to the bathroom I'd pop something in the microwave and on the way back, I'd grab it. That was how we did lunch every day.

Around 28 weeks, Rob and I ventured out for dinner out. I had to stand in line at Walmart to cash a check. It was only about 5 minutes, but my back hurt so bad. I'd been to the doctor that day and found out I was gestational diabetic and had been checked for a kidney infection. My labs had gone out that day and we were waiting to hear back. I'd been achy, and we were suspicious. By the time we got to the restaurant, I thought I was really in the need of the restroom. Come to find out, I couldn't go. I just HURT. I told Rob I was sick and we needed to leave right away. They gave us our drinks to take with us and we took credit for the meal instead of waiting for a refund. We were about 30 minutes from the hospital, but once we got in the truck and I told Rob the last time I hurt that bad I was in labor. We made it to the hospital in less than 10 minutes.

I was in labor at 28 weeks! I was put on magnesium sulfate and it made me very sick. I was on an IV of fluids and in so much fear and pain. I was contracting every 2 minutes at that point. My labor finally stopped. I spent two days in the hospital. I couldn't get out of bed because the medication made my legs like jello. I went home on terebutaline/Brethene. It is an asthma medication that relaxes all the muscles in your body, especially the uterus so it doesn't contract. I had to take it exactly every 6 hours. So my routine was to wake at 6, take my blood sugar before I sat up, go potty, take my meds, eat breakfast at exactly 7, take my blood sugar an hour later..I had to eat exactly every 4 hours, taking my blood sugar an hour after every meal and my meds every 6. It was non stop. My last dose was at midnight and I was always starving but I couldn't eat off schedule. Of course, I had to wake up at 3 am to go potty as well. Oh and I was on complete bedrest again.

It turns out a bladder infection was caused by the bedrest. I was allowed up for one hour a day to rock in a rocking chair to keep the blood flow to my bladder. The infection had brought on the labor. I stuck to my strict routine until 34 weeks when my doctor took me off of the meds. A week later, some friends came over to set up the crib for us. It didn't happen! We got hit with a huge storm that knocked out the power and we ended up at a Chinese restaurant for hours instead. We laughed and joked and someone joked I'd have the baby that night. Ha Ha. We got home after the power came back on around midnight. I was so wound up! I felt like I had drank enough caffeine to keep me awake for a month, but had drank water at dinner. I couldn't go to bed. I told Rob I'd sleep on the couch. I finally fell asleep around 3. Something startled me awake once but I couldn't figure out what. Around 5, I was woke up by a loud "POP". I sat up to see myself covered in pink. I was 35 weeks.

I woke up Rob and told him it was TIME. He thought he'd overslept for work! I flipped on the lights to show him my soaked pjs and I thought he'd have a heart attack! My water had broke with Matthew at 35 weeks as well, but it was just a little trickle. This was more of a flood. He then asked the dumbest question EVER. "Matthew is asleep. What do I do with him?" He completely forgot all of our plans! I was not in labor yet, so I called the sitter and told her Rob would have Matthew to her as soon as he dropped me off. My next step was to eat a sandwich. NO way was I going through the day with no food, lol! Then I called the doctor and was told to head out to the hospital. We got there around 6 am. I had my first contraction in the truck on the way.

The doctor saw me soon after. His last check was around 8:30 a.m. when I was given a combination of pitocin and pain meds. He said he'd see me around noon to check on me. I was at "4". The poor man never made it to the elevator. I went from 4 to 10 in 30 minutes. 4 hours after my water broke and 3 hours after coming to the hospital, Brandon Luke made his way into the world after 3 pushes. He weighed 7 lbs, 11 oz. Not bad for a "preemie" born 5 weeks early. His only issue was a little jaundice. No NICU and home with me 3 days later.

So there you have it. Tommy isn't my only miracle baby. Oh, and we did finally get our dinner out!

Today, we are taking him to Toys R Us. He's a member of their Birthday Club, so when we go in, he will get a balloon and special treatment. We'll let him pick out a small toy. On Saturday, I will go to the grocery and pick him up a cake and goodies. We are having another family stop by but no real party. We got him a minature shopping cart and groceries and a couple of Transformers. Wow. I can't believe it's his birthday! I can't believe he's 5!!!! Where has the time gone?

Diagram of Tommy's Heart Defects

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