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.

Thursday, February 15, 2007


I talked to the lady (Katrina) who establishes our insurance today, what a crazy job. She told me about a 43 year old mommy who is delivering her HLHS baby today. The family decided to do in home comfort care. This is one of our four options. I feel like is so permanent to take the baby home. In case I haven't explained all of our options I will re-write them and our feeling thus far. 1- Termination of the pregnancy. Obviously we are not choosing this one. 2-In home hospice comfort care. I would deliver at what ever hospital and take Alex home to keep him comfortable until he passed away. Like I said, we would really have a hard time with this. 3-heart transplant. We would need to move to deliver in California or Colorado be there until a neonatal heart is available and then wait for recovery. This couldn't work for us because I need to be closer to family. And the chances of getting a heart are really next to nothing. 4- the surgeries. Now there are no grantees that the surgeries will work. He will be in a lot of pain. We just still don't know much. Anyway.... Katrina, was very nice. She has been working with these types of situations for a long time. There are a lot of people involved in making this better.. thanks.


Terry said...

Brynn, Your so amazing!! I really am thankful that you are sharing Alex's story. I love you and your little family so much! You are all in my prayers!

sstar said...

Wow Brynn - how do you do it? What a heart building life changing time for your little family. Don't think I could do it. At least, I don't know what I would do - but I guess you take it one day at a time, right? It would all be so devastatingly impossible without knowing about God, huh. Keep it up babe - you're doin great.