Thursday, April 12, 2007

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!


Emily Elizabeth said...

Oh Rene, it sounds like you make time for everyone...but you. Don't forget to take care of yourself (I know, easier said than done).

The boys are gorgeous. They are lucky to have each is a wonderful way to grow up.

And I couldn't agree more, a diagnosis affects everyone in the family...just like each person in a family helps make that family. It can be really, really difficult to adjust to everyones needs and to balance them all. Honestly, you amaze me. But I never do cease to be amazed by every heart family I meet...

Awesome Mom said...

What a lovely family you have!!! Evan had the Fontan series of operations and while it was crazy nothing beats seeing your child pink for the very first time. Welcome to the blogging world!

Diagram of Tommy's Heart Defects

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