Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, June 12, 2007


I feel as though we have gone none stop since our little buddy came home. He is a handful of work as is his little sister. We are happy to do it all. Right now my friend Chelsea is over holding him so I could have a shower and write this really quick. He went to his pediatrician on Friday and everything checked out well, then yesterday he went to his cardo appt. with Dr. Sue. He said Alex is looking great and on track for his next surgery. They look for a couple of different things. The babies weight and how healthy they are. They also need to do a Cardio Cath that will tell us if he is a candidate for the procedure. They also want us to watch his color if he tend to be really blue they would consider doing the surgery very soon. He is eating well from a bottle. The Dr. said we might be able to take out his feeding tube in a week, but he needs to be taking everything including meds PO. He is up to 8.4 lbs and growing more and more. He goes for his immunizations tomorrow. Ry seems to think having her baby home is pretty cool, she tries to help with everything and is really being a good girl.... Thanks again for all the prayers. He is sleeping a little better, so we are too.


Anonymous said...

Brynn and Jeff--

I am so happy! Diane sits next to me at choir, so you and Alex are our first topic of discussion! You will continue in my prayers. Every inch is such a great milestone!! Love you, Linda G.

Brendalyn said...

Glad to here he is home and doing well. We hope and pray the best for your family always. love, The Hackings

sstar said...

8.4? That's awesome! He's really getting big! What a wonderful sign. I'm sure you are more busy than you ever thought possible. Glad there was someone to love the sweetheart while you got your shower. Unbelievable how important that can become. :) I'm sure I don't even know the half of it with regards to "busy momma". :) Love you guys!

Jenn said...

Hey guys-
It's good to hear you are all home and doing so well! It was nerve racking for us not to have a nurse watching over our little guy 24/7, and sleep depriving as well~ but it sure is all worth it, as I know you agree! We love you guys and wish you all the little naps you are able to catch!
Lots of love,
Justin, Jenn, Emily & Ian

Mike,Rebecca & Brinley Patton said...

Glad to hear things are going well with Alex, you are in the best care with Dr. Su. He is awsome and takes the time and answers all your questions and really cares for each one of patients. We're glad Alex is home and I bet you guys are relax and get some much needed sleep.Hopefully he will have some time to heal and grow strong before the next surgery.We're always hear if you need anything! You guys are doing a great job!

Anonymous said...

I am so glad things are going well. Let us know if there is anything we can do.
Love JJ

Anonymous said...

I happy to hear that you are home! I hope things are going well!

Hugs and prayers,

Heidi said...

I found your blog through a friend and just had to comment.

My little boy passed away 6 months ago with HLHS. We were planning to do the Norwood procedure with him but once he was born we learned he was not a good candidate. His aorta was too small and he had additional birth defects that we hadn't known about.

We had to make the difficult choice of spending a little time with him before his heart stopped working. Our boy is a twin so his sister is a happy and healthy 6 month old.

You have been through so much and I'm glad your little boy is doing well.

Best of luck to you and your family.