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.

Monday, May 21, 2007


Alex spent most of the day sleeping in my arms. I loved it. He was still in the PICU today without much change. They also wanted to rule out any upper respiratory issues, so they ordered in the ear, nose, and throat team to check him out. Everything seems really good. We don't really have a plan so I guess there isn't much to report. I visited our neighbors today. They have twins in the NICU at the U. They were born at 27 weeks gestation. It brought back memories of my Grace. (My niece, also born at 27 weeks) with all that these kids go through I am amazed at how sweet and healthy they become. Grace is turning 4 in about two weeks and she is a miracle. She stayed in the hospital for 3 months...... I would have gone crazy. She has amazing parents. I keep promising pictures but I don't have either camera to upload any.. I'll just keep you in suspense.


Jennifer said...

I am so glad that you got to hold him and love him as much as you wanted to yesterday! What a mini-blessing for you.

Mike ,Rebecca & Brinley Patton said...

It was great to see you and Alex,I know that it seems like things aren't progressing very fast but this is heavenly fathers way of preparing Alex to come home in tip top shape. You have all the best care Alex needs to be happy and healthy. He looks great for everything he's been through,and you need to stay strong for him. It was nice to hear that you went and visited your neighbors. As you know the extra support that you can receive can be a blessing...If there is anything that you guys need please feel free to let us know. I can't wait until Alex comes home and we can get the girls together and play.

Mike,Rebecca & Brinley Patton

Terry said...

I am so glad you had a quite day with your little man in your arms. You are blessed. Thanks for letting me help you out a little yesterday!! Remember I'm here for you for anything!!

Heart Mommy said...

Hey you guys, I just wanted to say thanks for everything. Mike and Rebecca....Thanks for coming by, and Terry Lady my floors and my hair look amazing.... Thanks everyone else too. Hey Englands I still tingle when I look at my carperts....

Quinney Family said...

Brynn and Jeff,

We just wanted to drop you a note to say that you guys are always in our thoughts and prayers. We missed seeing you guys on Saturday but know that the strength of our little ones Alex, Bryson, Brinley, Dillon and the gang is what got me through every mile of my half marathon on Saturday. The courage of these kids gave me the will to keep my feet moving when I wanted to stop. If they can endure everything that they have and will, then we all have motivation to be a little better in all that we do. Alex is a strength in your lives and gives us a little insight into the miracles from above. Keep the Faith!!

Eric and Jennylin Quinney