done with the hospital for today and information

Jack did great!!  He was better then I could have every asked for.  We arrived at the hospital at 7:30am and did not leave until 4:30.  Wow, what a long day.  It was filled with talking to every team member that will be taking care of him (anastesia, cardilogist, CICU team, pacemaker specialist/cardioloigst  I got to hold a pacemaker in my hand...technology is amazing!!  We did learn today that because of his Fontan procedure, he will always have to have his pacemaker in his abdominal.  So, the original thought of it being moved up to his clavicle area can not happen because of his soon to be corrective anatomy.  Dr. Brietbart showed us exactly the procedure he was going to do on Monday.

Before I explain...imagine this image switched with the left side being on the right and the right side being on the left (which is Jack's defect L-TGA with double inlet single ventricle and pulmonary stenosis).  So, the Fontan consists of stitching the superior vena cava and inferior vena cava through the anatomical right atrium (R.A. in this picture, L.A. in jack), making an artificial wall to make a chamber and leaving a small hole for pressure to not build up, and cutting the pulmonary artery away from the hear itself.  The small hole is likely to close up on its own as the body learns to function with the new O2 stats.  If it does not close up within a year, they will go back in and close it.  It is really fascinating when you stop and look at it.  It is truly amazing how far modern medicine has come.

HR is 61, O2 is 94 (best ever). Jack was not showing signs of any heart block when the EKG was performed. Cardiac echo finished. Now just waiting to talk with the docs about the heart cath tomorrow. Looks like we are going to have to stay over night at the hospital after the cath tomorrow. He is doing great!! Just flying buzz and woody all over :).

At Boston children's hospital...

As most of you know my son, Jack was born with a congenital heart defect called L-TGA, a large VSD, pulmonary stenosis and double inlet single ventricle. Jack has been a miracle since birth and skipped every surgery up to this point. On, November 5th we went to the cardiologist for our 6 month check-up and after all testing was finished, it was discovered that Jack's heart is in 2nd degree (with some 3rd degree spikes) heart block. The cardiologist said jack needs a pacemaker...our world was turned upside down again. We always knew that this day could happen but it hit us like a tons of bricks. So, over the last several weeks we have been to many doctor appointments and jack has worn a heart holter. After talking with the cardiologist up in Boston, a date for surgery has been set. We are currently at children's hospital of Boston. Jack is scheduled for a cardiac echo today, a heart cath tomorrow, and his BIG corrective open heart surgery (the Glen-Fontan procedure) and pacemaker placed on Monday. I plan on posting updates as we have them. I am so very scared, and afraid about the surgery and about jack's further!! We have been so blessed to be a heart family, but in a distance because he has been so stable up until now.

Text try to see if it will update my blog

Photo Shoot with Chrisit Colvin at Ross Bridge

It was beautiful fall afternoon, and we got to have fun as a family and have Christi take some pictures...right in our neighborhood.   

Eight months later...

So, it has been 8 months since my last blog post.  Having two children sure does take all my spare time.  I will try to recap quick.  Evie is almost nine months old.  She is the cutest, loudest little girl I have ever met :). She is crawling (has been since 6 months), pulling to stand (has been since 7 months), cruising furniture (has been since 7 months), standing independently (has been since early 8 months), walking with a push toy (has been good since 8.5 months), and taking 2 steps...WOW...what am I going to do with her.  Jack thinks she hung the moon and she thinks he is the best, too.  It is amazing watching the two of them.  They just love each other so much.  I of course and scared to death that she is going to get seriously hurt the way they play sometimes.  I am really working with Jack on being gentle.  I don't think he sees a baby when he looks at her.  Evie is currently on 3 medications, two are for acid reflux that she takes 6 times a day and the third is an antibiotic that she takes because we found out 2 months ago that she has grade 3 reflux of her left kidney.  We are scheduled to see a specialist in January.  But other then all her medicines, she is so happy.  I am learning very quickly how different raising a little girl is from a boy.  She will give you about 2 minutes to meet her need...and then she yells...and very loudly.  Jack never did this!!  He was so laid back.

I have changed jobs.  It has been a huge change for me.  I just loved my old job at the The Bell Center.  I loved everything about it, except it kept me from my own kids.  I am now working part time, and I am able to spend more time with Jack and Evie.  I am working for a company called pediatric associates, inc.  I am still working with some in early intervention, but also doing some school systems.  The flexibility is awesome.

Jack is great!!  What a joy...and a tester at the same time.  He loves buzz and woody and everything Toy Story.  He goes everywhere is a houndstooth Bear Bryant hat that he calls his cowboy hat.  I am going to write more about him in the next post.  But for now...here are some great pics!!

Welcome to the World!!

It has been a long time since I have posted. First our computers crashed and then time just got away from me. And then....Evie was born!! Yes, we are now a family of four!!

Welcome to the family, Evelyn Boyd Warwick "Evie"

Born March 7, 2010 at 3:45am weighting 9 pounds.

these are some pics from our newborn session with Becky Abernathy (the same photographer that took all of Jack's pics).

things have been crazy since becoming a family or 4. It is amazing how adding one little baby can change a family so much. I never knew how easy we had it with just Jack. We are learning a lot about ourselves. Since being in this world (6 weeks now) Evie has been put on medicine for acid reflux, a thicker formula due to the reflux and medicine for constipation. How is it that my child with a CHD never had any feeding issues and would eat any time a bottle was put in front of him, but my child who is completely health has every eating/pooping issue I know? Funny how things work!! I know that God will only give you what you can handle, but with the lack of sleep and trying to keep up with Jack at 21 months...there are days that I don't think I can handle it!

I, also, don't know if any other people with more then one child has experienced this but I am having a hard time sharing my love between two children. I don't know if it is because Jack has his heart defect and I feel an extra special attachment to him and his precious life or because Evie is in the "lump" stage (as one of my friends calls the newborn stage), but it is hard for me right now. I hope that doesn't make me a terrible person. She did finally smile yesterday, and that helps melt my heart!!!

Well, I have a lot more to report on, but I have to go to sleep since she will be up in a couple of hours. I promise to update again...and not wait a couple of months.