Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Monday, May 14, 2007

Held him till my arms fell asleep!

I am so grateful for yesterday. As you are beginning to understand, Alex never follows the norm. He is once again doing something totally different than what should happen. If it is out there Alex will try it. He has been very dusky today. He looks like he might have purple socks on his feet. They have been running tests all day to determine why his sats won't raise and his heart rate is so high. He also had an echo that looked really good. His blood gases are good, but they can't seem to get his sats stable. So they started with some cultures to see if he has an infection. He also went on an antibiotic so that it can start helping if there is and infection. Then they also talked about putting him back on the vent. I obviously don't want this, but if it helps him I know it is best. We are worried he might be having some withdrawal from the drugs he's been on so they went back up a little on his doses to help with that. I hope withdrawal, is what this all is, because that would explain everything and it would be an easy fix.....We will see. Yesterday I held him until my arm fell asleep. Now I wish I would have stayed and held him all night. It was the best mothers day present ever to hold my two babies.


Anonymous said...

We're here, we are praying for ya. Hang in there. I just wanted to pass on something that really helped me get through those crappy days and I know that even though it came from my uncle during times with Bryson I am confident that the same thing can be said for you guys:
I think you are very lucky to know that the Lord knows you are so strong and so dedicated and so loving that you can be exposed to big challenges and He knows you will be successful. Remember, Joseph Smith faced hugh trials because he was strong and the Lord wanted to help him grow even more. I am certain the same principle applies.

I read that and remember feeling overwhelmed when he mentioned Joseph Smith, but it is so true. The Lord can see your capabilities and knows how strong you and Jeff are. This will all only make you and Jeff stronger and your family closer. I truely feel that it is not the trial that we face but how we face the trial that matters. And you guys are doing awsome!!!!!!
We love you guys
Jennylin and Eric

Anonymous said...

I have to agree with everything that Jennylin and Eric so beautifully said! You will get through this and you will be stronger and closer than ever before! Just seeing the pure happiness beam from your face in the picture Jeff posted of you holding both of your babies was amazing. No Hallmark card could have captured that ever! Once again thank you for sharing your journey. Your testimony is so inspiring!


Anonymous said...

I really must agree witht that great testimony fro your friends. stay strong. remember you told me tiny steps to the side... then he'll step forward again! You really do have an amazing fighting spirit. and your little guy does to. Our prayers are always with you! Love you Lady!!!

Anonymous said...

Brynn, This to shall pass... I know the feeling of wishing you stayed and held him all night. It is hard to admit that we are human and have physical needs like sleep and food. Those needs sometimes become quite a burden especially when things can change so quickly with these little ones. But hang in there. The nurses are watching Alex so closely and will help him through this trial and any others that are on the path for him to go home. I hope this is resolved soon for him and for you. I told your mom how beautiful he is and how he looks so so good. I can see in your eyes the pure joy of having your sweet babies in your arms. You are a very blessed woman. You deserve these happy times and the comfort that comes during the hard times. We love you guys and will pray for Alex as we have been because we know Heavenly Father hears all of us and will bless Alex. Love Kathy and Rob