Tuesday, May 26, 2009

Getting Back To Normal...

-7720-7722

How exactly does a family transition from going full speed ahead in the land of Magic to living normal life again? -- I guess we will find out.  Today is our first official day of normal life and so far so good.  Madison spent the morning going through all her treasures she collected during our vacation, the favorite of course was her Snow White dress from Nana and Pop pop.

Little Gavin is really feeling the effect from the vacation.  I imagine that this week will bring lots of changes in TPN to normalize his electrolytes and maybe even some blood.  Gavin has been having extremely low heart rates at night, to the point that we are listening to the monitor all night long.  The low heart rate is just a sign of exhaustion -- and now we have to figure out how to get him back to baseline, which is easier said than done.

We are hoping for a quiet week of rest and recuperation!

9 comments:

evwmom said...

Love the costume, she is so sweet!! Hope Gavin gets adjusted being back home. How long did you go before using Omegavin? how high of TPN was he on before going on it? Evan is on a cycle of TPN now on 25 for a few hours to 10 for 1-2 hours then off 2-8 hours. I have requested for him to have "breaks" for a while now, and now the Dr. has agreed to start. I am doing research on omegavin and have contacted Dr. Puder in Boston by email. I don't know what is going to happen after surgery to reconnect, but for now I hate the thing that is keeping him alive. So frustrating! I know you all have been through sooooo much and though I could ask you.

~ Lisa @ AbidingThere~ said...

Welcome home. I bet it feels good to sleep in your own bed again. I hope you guys have a peaceful week :)

Anonymous said...

Oh Madison, you are so sweet. i have your Snow White picture on my screen. You look great with black hair!
Are you helping mommy wiht all the laundry? hehe
I am sorry you came back to more rain. Next week and this weekend look awesome!
Have a great week and we hope to see you soon!
love, MIss Dawn

evwmom said...

Thanks so much for the info, his bili is at a 3 right now. Yes Dr. Puder already emailed back and said he could talk to us at anytime. No one knows about omegavin here, or at least they are lying to get us off their backs. I am that mother who does the research and then asks the questions as if I don't know a thing Think by now they have read right through me. The chid hosp is such a change from the NICU. The NICU nurses taught me soooo much and here they look at me like I make this stuff up! Not all of the nurses, just the past 2 days. Drives me nuts! You all are amazing, My husband is so not into BLOGS, but It keeps me informed, and connected with other moms in similar positions. If it weren't for the short gut news, I wouldn't have learned of Omegavin. Keep the pictures coming, they are amazing! My Minolta SLR has nothing on yours! haha

Becky said...

Madison looks so grown up and magical in her snow white gown! Her blue eyes just sparkle! Hope Gavin adjusts to being back home after a busy week and you guys have a very uneventful transition back into home life! Blessings!

JayCee said...

She is adorable - looks just like Snow White!

ISO (In search of) said...

What a beautiful little princess! I'm so glad you got to experience Disney. (And I hope your family gets to enjoy it again and again)

Anonymous said...

YES, here's to many, many more wonderful blessings and memories for your precious family.

How was the week back to "reality"?

How is Gavin doing?

I check your website and pray for you all daily.

God bless!

Barbara said...

Blessings.