Saturday, April 28, 2007

Wow! Tommy has never attempted any kind of locomotion. We have had two each sessions of OT and PT. I am playing with him as well, but it is mostly to show him where his toys are. Imagine my surprise when I saw him roll on his side all by himself! Oh, I cried! I am so impressed with how hard he is trying. I have never been so happy to be overwhelmed with milestones! Swallowing, teeth, now rolling! I am doing such a balancing act of enjoying the moment and not being able to wait to see what he will do next!

Friday, April 27, 2007

A little About Brandon

Brandon is our 3 year old. He will be 4 in June, on the 4th. He is learning to assert his independence. That means his favorite word is "no". He can be very sweet and loving most of the time, but that is just typical of a 3 year old.

Brandon has many favorites. This week it is singing the song "Don't you want me, Baby?" (from the Chips Ahoy commercial)His favorite movie is "Matilda". He loves all things that go...Hot Wheels, firetrucks, airplanes, you name it. If it goes, he loves it. He loves his brothers very much, but especially Matthew. They share a room and although they have separate beds, Brandon still insists on sleeping next to Matthew. He is slightly jealous of Tommy and usually expresses it by playing with Tommy's toys even though he knows they are off limits.

He has learned to sing his A,B,C's recently and loves for everyone to listen to him. He is such a joyful child. Full of life and energy!

Thursday, April 26, 2007

Murphy Doesn't Live Here, So Why Are We Using His Law?

We have our first tooth!

Tommy finally got in his bottom right tooth, and the left one isn't too far behind. He got his last immunizations today and does not need any more until he is a year old. Whew! My little guy is zooming right past me....He is seven months old today!

My day started off on the wrong side of the bed. First, I vaguely remember Rob asking me for clean clothes, and I think I said something very nasty to him in my half conscience state. Mind you, it was 7 a.m. and I had been sleeping about 3 hours at that time. At nine, the phone rings. It is the missionaries wanting to talk to Matthew. Still in a state of semi-awareness, I ask them to call back later, because he is asleep. I know this because Matthew, for some reason is in my bed, but that doesn't register...Noon, the phone again. This time I wake him up. I sit on the foot of my bed and notice an opened baby wipes box and all of the wipes on the floor.

Oh My Gosh! I am fully awake as I realize Brandon is awake. It hits me. Matthew and Brandon share a room and if Brandon wakes up, he wakes up Matthew as well. Today, Matthew is in my room. (I find out later he had a nightmare)At that moment, Brandon comes racing into my room with open arms and smiling. He hugs me and says he loves me, but I notice his hair is kinda spiky. And hard as a rock. I get up to see what he has left of my house, expecting the worst.

He has found an open bag of candy corn in the refrigerator and ate it as breakfast, then he has unrolled an entire pack of trash bags from the kitchen, through the living room and all the way down the hall to his room. I find a ball at one end. It just so happens to be one of Tommy's sensory balls that Brandon knows are hands off! He then proudly shows me an empty tube of hand lotion which goes to explain the hair. Oh, and my brand new couch is wet. He peed on it. Just lovely. Febreeze isn't working anymore. I am going to have to strip the cushions, scrub them by hand and put them in the sun. We've only had them about two months. I was hoping to have them a while longer before they sent in the destruction team.

Then Rob comes home for lunch. I have been up about 15 minutes. He is home because Tommy has an appointment at 3 for his well baby and shots. He makes himself lunch and shares with the boys. I start getting Tommy ready. I am getting angry because every day, its all up to me to dress and feed all three boys, including Tommy's trach care and giving his meds. I go to the living room to hook Tommy up to his feeding pump, hoping to have him fed before we have to leave. I want to take a shower, and we have about 30 minutes until we should leave. I walk in to find Matthew and Brandon both half dressed and sitting on the couch watching cartoons. Rob is playing a video game.

Now imagine my eyes shrinking down to slits, my face turning tomato red, and steam coming from my ears. I tell him I am taking a shower, he is feeding the baby. (knowing full well he has no idea what to do)Matthew coaches him on how to set up the pump. I hear it beeping from the bathroom and giggle. Rob says something colorful and asks Matthew what to do. The beeping stops. I walk in and find Tommy's pump set to his overnight setting, so I quietly bump him up and finish dressing.

Tommy was already in his carseat, so when I was finished getting ready, I turned off his pump to pack it up so he could finish in the car. I reach to detach the Gtube and I find out that Rob didn't attach it properly. Tommy is sitting in about an ounce and a half of formula. The carseat is soaked! Somehow he managed to not have his clothes soaking wet, so I was able to mop up most of it with a towel, then I folded a receiving blanket and stuck it under him and refastened him. Get this...I get blamed for it! Rob said I pulled it out while it was going. ACK! Somehow I managed not to kill him during the ride and by the time our appointment was over, everyone was calm.

That's what he gets for asking me for clothes while I am sleeping, I guess. I gotta learn to be nicer to him. In the morning I will just mumble the word "dryer".

Tuesday, April 24, 2007

Check Out What Tommy Has Accomplished!

He has been able to do this for about a week now, and today I got him on camera. He did really well with his OT today and showed really good tolerance. I took this right before she arrived.

Yes, the doggie is attached. It is called a "Wubbanub"

Picking My Battles

I realized a long time ago that Matthew and Brandon are starved for attention. Tommy requires so much care, and it seems we are always going to one of his appointments, someone at our house to see him, and just regular baby stuff on top of it all! They act out a lot, and although I find this unacceptable behavior, I completely understand.

Of course, today was another one of those days where it seemed to be all about Tommy. I decided to change it around for them. After Tommy's appointment today, Rob and I took them to C.C.'s for pizza. Brandon loves the mac and cheese pizza! We then went to a second hand store called Once Upon A Child. Let me tell you, I love this store! I don't even know why I wanted to go, just kind of a gut feeling. I found Tommy a special Boppy pillow with a little gym attached to the top, and got Matthew and Brandon each a book. I also got them a movie. I found "Matilda" for $2.50.

So tonight, after lots of yelling and screaming, I decided to pick my battles, and at midnight, we began our movie! They had an absolute blast, and as soon as it was over, we said goodnight, and in less than 5 minutes, they were in bed. Looks like I am onto something if I can bump the time up by 30 minutes a night, in a week they should be going to bed every night at a decent hour.

I vow every day to be a better mommy. Today was one of those days where I think I succeeded.

Sunday, April 22, 2007

The Fallen Angel

Yesterday turned out not to be such a good day after all. We live in Charleston, SC, about an hour from the Blue Angels crash. It ends up being local news for us, as well as national. I ended up not watching movies all day like I planned, but instead watching coverage of the crash. What a sad day. About a year ago, the Blue Angels were here in Charleston. It was a sight that brought tears to my eyes watching such a patriotic show. We live so close to the airfield that we watched the show from our yard and the planes came so close to the ground we could see the pilots! Technically, we got two shows because they did practice runs the day before the show.
My heart goes out to the family as well as the other pilots. This is just devastating any way you look at it.

Saturday, April 21, 2007

Happy, Quiet Day

Happy Day! Rob took Matthew with him to go run r/c cars. I am enjoying the peace and quiet of not having Matthew and Brandon fighting! Brandon is very content and enjoying his mommy-time. I am so happy to finally be getting a break. No housecleaning, no fighting kids, just a sleeping baby, a content 3 year old, and a day of chick flicks on cable tv! Bliss!

Friday, April 20, 2007


I have been thinking about Tommy alot since the time is coming up for his next surgery. I wanted to know where the time went. I wanted to know where my tiny infant in my arms went. Oh yeah, he never was.... I am mourning Tommy's infancy, or lack thereof to be more to the point. I have pictures of me holding him as a "newborn" if you can say that about a 33 weeker preemie. Every picture I have he is covered with wires or tubes. He was on a cannula until his heart surgery, then it was a ventilator. From October 24, the day before his surgery, until Dec 6, the day after his trach was placed I could not hold him. He was due November 11, so when I finally did get to hold him, he was almost a "month" old!

I never got to nurse him. The one child I finally decide to breastfeed, and he can't swallow. Stress finally dried up what I was trying to pump for him when he was 3 weeks old. I never got to hold him to give him a bottle. I have never had a 2 am feeding, although I do stay up until that time to refill his feeding bag and give him a dose of reglan...He never wakes up. Until 2 weeks ago, he had not slept in my arms since he was in the special care nursery.

My only happy thoughts today is that he is being very sociable. He fussed to be removed from his swing. He has a hard time being held and making eye contact at the same time, so he is sitting on the couch next to me in his bouncy. We are talking and laughing with each other. Ok, I am talking, but we are both laughing! I am trying to give him toys of different textures, colors and sounds while we talk. A side affect of me trying to break down his walls.

When we brought him home on Dec 13, he had been on this earth for 79 days -- about 2 and half months. His due date made him just over a month old corrected age. It was so traumatic. He made no eye contact for another month, and it took another month for him to smile. It is still a very big deal to me when he smiles. He just laid in his bassinet and did nothing. No facial expressions, no emotion. Just there. For a few weeks, we kept him in the living room because we didn't know how to move his equipment every single day. We were adjusting to the massive amount of boxes delivered from the durable medical equipment people, along with his hardware. I slept on the couch next to him. More like short naps.

I look back and wonder if I could have done something to let him know I loved him more. Trying to hold him ended up with him not being able to breathe and me crying. Even now, I can only cuddle with him for a minute or two. He doesn't tolerate the feeling of being held and making eye contact at the same time. It must be one or the other. My new trick is to hold him up on my shoulder, but show him ourselves in a mirror. I get to look at him while I am holding him, but he doesn't have to look at me.

So now he has been in our lives for almost 7 months. He has the development of a 2 month old, right where he was when we brought him home. I am conflicted to help him develop to a normal for his age child and holding on to the infant I never had.

Thursday, April 19, 2007

Cardiology Clinic Results

Can I stop being a "heart" mommy for one day???

Today was cardiology clinic. He hates xrays, tolerates the EKG until the stickers have to come off, and went to sleep as soon as his echo was finished. Dim lights, a mobile overhead, comfy bed. I wanted to trade places! All was going well until we put that little probe on his foot, and then on his hand to double check. His sats hovered in the mid to low 70's! The nurse left that little probe on for nearly 10 minutes and the best she got was a 74. Can you FEEL my world screech to a halt???

All of the other tests came back okay, so we are not looking at congestive heart failure, just low sats. Could be from the cough he has, or it is his new baseline. Our plan of attack is to do a heart cath in the middle of May, and open heart surgery in June.

I feel like I am banging my head against a wall. I fought so hard to get all of his therapies lined up and now instead of the 6 months of treatment he SHOULD have had if the EI program had done what they were supposed to have done, he is only getting about 2 months. At least he is going to get a good head start before he is back in the hospital again.

On a happy note, those two teeth of his are almost through!

Wednesday, April 18, 2007

Results of Tommy's OT/PT evaluations

I am so emotionally drained. Today was our IFSP meeting to add an OT and a PT to Tommy's treatment plan through our early intervention service. They had their reports of the evaluations they did last week. I was totally caught off guard when they both told me his motor skills and sensory skills are that of a 2 month old! I knew he was behind, but I never in a million years thought it was this bad. We now begin aggressive therapy in physical therapy and occupational therapy to work on his sensory issues and lack of gross motor skills. Once a week for one hour each until further notice....

I am physically tired from a lack of sleep that I won't ever be caught up on. I asked for respite care again today and I was told the paperwork had been filed and it was a matter of waiting to see if we qualify. Tommy has been coughing and wheezing all day. Ugh! Every time I sit down or start something (laundry, cooking, eating, showering) I have to suction him. If I had help just one day a week on a day I won't be in a clinic somewhere, I could take the boys for a walk, take a shower, catch up on a book, finish a blog entry in one sitting!

I always get worked up the night before cardiology clinic day. One little variation in his tests could mean bad news for us. It hasn't happened yet, and I stress out all the time about how long we have until the next surgery.

GRRR! Fighting boys again. Sooooooooooo tired of that nonsense too! Going to put the baby to bed and hide out in my room with the door barricaded.

Tommy's Teething!

Tommy has been so cranky! He has this lousy cough, but no other symptoms. Today, I happened to look in his mouth and realize the root of our troubles...TEETH! He is about to sprout two on the bottom any day now. I can see the little white tops under the gum and feel them with my finger. I should have known, he has been putting the paci in his mouth and biting down as he pulls it out. I just thought he learned to make a new noise and was playing (It makes a popping sound) I gave him a teether and he just went nuts biting it!

Hopefully, any day now he will get them through and be back to his old happy self again!

Monday, April 16, 2007

The Walls Are Closing In!

Seems we have some aggression issues in our home. I think it comes from too much testosterone! I have been trying to get Brandon into a bedtime routine. He is 3, so I have to get creative. We have it down to after we eat dinner, he has a bath, then when the sun goes to bed, then so does he. (It's usually dark by the time he finishes his bath) Lights out, no TV. He did okay today until the no TV part. He thinks if he turns it down reallllly low so I can't hear, then I won't figure out that it is on. Like I have said before, we live in a single wide mobile home. From the couch in the living room, I can see the glow from the TV in their room, even though I can only see the doorway. I guess they figure they can't see mom, so they are safe!

So now to the aggression part. Even though their room has bunk beds, Brandon refuses to sleep alone. It doesn't matter which bed Matthew sleeps on, Brandon will jump in beside him. Well, tonight after a scolding about the TV being left on, I guess they were mad and took it out on each other. I hear the usual yelling and screaming for about 2 minutes, some crying then quiet. Then Brandon sneaks out of his room to tell me he needs his blanket (aka superman cape). I notice his cheek is bright red and I ask him about it. He says Matthew hit him. So I call Matthew to the living room to question him. He doesn't deny it, and up until this point, I think Matthew smacked him. Until Brandon says "he hit me like this" and makes a fist and touches it to his face. Matthew PUNCHED him in the face!!!!

I sit there with a shocked look and decide this is a job better made for mom and dad, so I call Rob in and tell him the entire story. We decide to split them up for the night. Brandon gets the room and Matthew gets the loveseat. Both are asleep in less than 5 minutes. Go figure.

It all comes down to the fact we don't have enough room in this little box we call home! It is a 3 br 2 bath. Matthew and Brandon share, Tommy is in with Rob and me, and the last room is an office/workroom where Rob tears things up and puts them back together. We are looking in the very near future into gutting our bathroom and making it into a room for Tommy. A crib won't fit in my room and he is outgrowing the bassinette. We need a house, but we can't afford to buy one. Anybody want to give us one, haha! Yeah, right. We are buying this trailer, so I am hoping next year to refinance our loan and maybe trade it in on a double wide with a yard. Ugh. I hate trailers, but we do what we have to do. In the mean time, we are just going to have to maximize every bit of space we have.

And maybe put the boys in the yard with some boxing gloves next time!

Sunday, April 15, 2007

Up All Night

What a night/day this has been. Tommy started this horrid cough last evening. He has a trach, so we tried to change out the trach tube to see if it was blocked or rubbing him the wrong way. We put him under warm, moist air. Nothing is working for my poor baby. He sleeps for an hour, then coughs for 3 or 5 minutes, then sleeps again. This has been going on all night. I know this for a fact because I was up all night.

Several reasons for being up...first and most important was Tommy. I was worried about him. Second, we were under a tornado watch all night (we live in a single wide mobile home!). Third, two 20 oz Diet Dr. Peppers! I was so wound up, I found myself on ebay looking for a new diaper bag for Tommy. He needs two. One for the regular baby stuff, and another for what is called a "go bag" in which we carry all of his trach supplies. We have to take it everywhere we go, and the bag I have for that purpose now is too flimsy, so since I found his regular diaper bag on ebay, I figured it would be a good place to start. Found a brand new one for less than $15 including the shipping! I probably would have seen it in a store for no less than $35!

So that got me thinking about how to get my $15 back that I just spent...Rob has two big totes of what he likes to think are "collectibles". He asked me to sort them and put them on ebay months ago, but I have never had the time. As it turns out, he might have one or two things in there that will bring in a decent profit. At least enough to cover my diaper bag, haha. I wanted to get it because we live in Charleston, SC. (hurricanes) I need a bag big enough to fit double supplies, plus extra for his trach to keep in our van at all times. I also need to make a box with other supplies like sterile water, peroxide, vinegar, diapers, clothes, etc.

I have never in the 6 years we lived here had an emergency kit. We always figured we'd grab Matthew and Brandon, a few clothes, computer, and go. This year is sooo different. I HAVE to have sterile water to clean his trach! I have to have back up supplies. I hate "what ifs", but it would be my fault if we are stuck with no power or clean water and I had no way to clean his trach or give him meds.

Something else I did while I was on ebay was to apply for the ATM card through paypal. Now if we have to evacuate, my mom or mom in law can credit my paypal account if necessary and I can use the card on the road without having to go to a western union or wait for a transfer, etc. Of course, I have to be out of the area to use it if there is no electricity! The first things they tell you to do if a hurricane is on the way is to gas up the car, get water, and get cash before the ATM's shut down if the power goes out.

I feel so blessed we have never witnessed anything more than a bunch of rain in the 6 years I have been here, but at one time, Hugo was here, so I never count anything out. I guess having Tommy has made us more responsible. Or maybe just more aware of what could happen. I have 6 or 7 weeks before the "official" start of the season, so I have plenty of time to sort out how I want to organize his supplies.

Well, I now have been up for 20 hours straight. I think I will take a nap until the kids wake up. Some sleep is better than no sleep. Besides, the tornado watch is over in 30 minutes, and my caffeine wore off. :)

Saturday, April 14, 2007

Cartoons and snoring...

Hello, All! My current listening selection is "Toon Disney" on the TV, and hubby snoring on the couch. Here it is, nearly 2 p.m. and he is snoozing away. I had plans to grocery shop today, but that looks like it has been shot to pieces! I have someone coming to look at our central air unit in a couple of hours so now is not a good time to leave. Pleh. I don't know how to drive or I would leave him here and go by myself.

Yes, I am 35 years old, and I don't know how to drive. I got my permit 2 years ago and right after I got it, our car broke down. The next couple of cars were complete clunkers, so hubby didn't feel comfortable teaching me to drive in them, or the thought of me breaking down somewhere. So finally we get a new van in awesome condition...and my permit expires! I never learned because my parents did not want a licensed teenager on their insurance policy. I am the oldest of 6 and money was tight. None of my brother or sisters learned until after they were 18 and could pay for their own insurance. I decided to get married at 18 instead of learning to drive. Once I married my ex husband, he liked that I didn't drive. I tried to learn once, but his idea of teaching me was the "cup on the dash" method. (He is an "ex" for a reason...)

Rob really wants to teach me, but we now have to squeeze in a day at the DMV along with all of the doctor's appointments, grocery shopping, work, home school, well, you get the idea.

So, here I sit. Matthew and Brandon watching cartoons to the sound of snoring. I am hoping hunger wakes him up, so I am off to fix lunch for the boys.

Thursday, April 12, 2007

Check it Out! I have TWO feet!

Finally, a Quiet Night!

A momentous occassion! For the first time in about 2 months, I have all 3 boys in bed and sleeping before 9:30! Wow! I am pretty sure Matthew and Tommy will stay put, but I am worried Brandon will still wake up later and stay up all night again. He has been doing this alot, and I have been trying just about everything to keep him awake during the day. Today it was nice enough to let him go outside and play for about an hour. I hope he just needed to run some of that "boy" out of himself!

Tommy figured out he has TWO feet today! Up until now, he knew he had a left foot, but not both! I had to laugh when I saw him today. I had put his bouncy seat up on the couch (I tuck the back of it into the couch cushions). I looked over at him and he has both feet up in the air looking back and forth at his feet. He looked quite amuzed! I ended up putting rattle socks on him to really keep his attention.

I got Matthew to have a really productive day with homeschooling. He has good days and bad days. Such is the life of ADHD. I feel great if we can get two good days out of him in a week. We have a hard time keeping a schedule around here, plus Brandon loves to irritate Matthew just as he is beginning to concentrate. I am still trying to figure out how to teach Matthew effectively and entertain Brandon at the same time.

So now it is Mommy time! I had myself a piece of chocolate cake and now I am thoroughly enjoying an episode of Law and Order:CI. Here's to hoping the boys stay asleep until I can go to bed at 3 am. Yep, 3. Tommy has to have meds that late, so this is the time I get things this blog, haha. Well, back to the t.v. show!

A Little Background

Well, lets see...Let me introduce you to my family and myself. I am Rene, a stay at home mommy married to Rob, my "Techy". We have a total of 5 boys between us, with the youngest three living here and keeping us on our toes!

Our boys are Alex #1, my son from my first marriage. He is 16, Alex #2 is Rob's son, he is 9. Together we are raising Matthew, age 8, Brandon, age 3 and Tommy, now 6 months old.

My blog title is "Musings of a Heart Family" because Tommy has a congenital heart defect and although it may affect him medically, in all actuality, it affects all of us in one way or another. For instance, I am now a stay at home mom. I had been working until he came along. (Ok, technically until I was ordered to quit by my doc in my 5th month, but I had planned to return) Another way it affects us is we are now home schooling Matthew. It's not easy to juggle doctor's appointments around a school bus schedule, so he missed more school than he should have. Now we just pack up the books and school goes with us. This is also a wonderful thing because Matthew is ADHD and the one on one is perfect for him!

Brandon is more of a troublemaker these days. He refuses to potty train, and with all of Tommy's care, pull-ups are easier at this point. He has also began to stay up all night and can go on very little sleep. I have not had a moment's peace out of him in over a month.

So now on to our "heart" baby. Thomas Lee Dereksen was born back in September a full 7 weeks, 3 days early. We are proud of that accomplishment because my water broke 3 weeks before that! I was in the hospital on bed rest, both of us doing well when one morning I had blood mixed with amniotic fluid show up, so we induced. We did find a clot in the placenta, so we did the right thing. We knew at 5 months gestation he was a heart baby, we just didn't know to what extent. We had to wait until he was born to know that. He ended up with a combination of defects: Double Inlet Left Ventricle, Transposition of the Great Arteries and Pulmonary Stenosis. We also found out at one week old that he can't swallow due to a defect called cricopharyngeal dysfunction. That earned him his G tube.

At 4 little weeks old, weighing 5lbs, 4 oz, he had emergency heart surgery to put in a BT shunt to allow more blood flow through his pulmonary artery. His oxygen saturation level (sats) dropped from the 80's to the 60's in a matter of hours and he could not recover on his own. Being preemie and not being able to swallow really worked against him and he spent 5 weeks on a ventilator after the surgery. Finally we gave him a trach. We were finally able to bring him home after 79 days in the hospital just in time for Christmas! His other little quirks ended up being reflux (corrected with a Nissen fundoplication) and sensory issues. We now work with a speech therapist, an occupational therapist and a physical therapist.

We go to the cardiologist once a month for check ups. I post all of that on our carepage. The link is in the sidebar and his page name is ThomasLeeDereksen. We are watching his O2 sats. When they begin to drop below the 75% mark, we will plan his next surgery. He needs at least 2 more at this time to "repair" his defect. We see an ENT every 3 months now since he has no issues with his trach. The vent tube scarred his airway shut, so he will need reconstructive surgery between his 2nd and 3rd heart surgeries.

Well, that about does it! I hope you will share with us all of our ups and downs!

Wednesday, April 11, 2007

Hello Everyone!

I have finally started a blog! I have attempted to do this before, and I am very pleased to finally have one up and running! I want to welcome everyone to this blog and my hope is you will come back again and again to read what is going on with our lives.

Diagram of Tommy's Heart Defects

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