How are YOU doing?

This is a question are asked often.  The answer is usually that we are hanging in there, which is the truth.
Today Mark put a post on his Facebook page that I wanted to share with you here on the blog.

Mark's post: "Let me start with "nothing went wrong today" but the good days are quickly replaced with hard days. It's hard watching your family struggle to stay alive day after day. Milestones are quickly replace by a destat or emergency where even the nurses look concerned. Facebook may not be the correct forum for this, but just say a prayer for the twins if you would."
After many positive comments, he followed it up with:
"Thank you everyone. Julie and I had a great break down and cry session tonight. It makes you sit back and reexamine your life and dreams watching your family struggle.  I know we aren't the only ones with problems, so do yourself a favor and go hug your family and tell them you love them everyday!"

We really are hanging in there.  One of Mark's friends who has been through this NICU experience, said that the middle part is the hardest. I totally agree with her.  We have been living this life for 52 days now.  It is amazing how quickly the time has gone, but yet, we still have so much further to go.  We are tired of driving to see our children and just want our babies to be home with us, just like a normal family.  We look forward to the the late nights, poopy diapers and everything else that will come with having our babies at home. 
Erin is doing great. She is gaining weight every day (over 4 lbs now) and is making progress on her vent settings.  She is wearing clothes and is regulating her own body heat which means the lid on her bed is up and the heat is off.

Will needs some extra prayers.  He is struggling with many things.  For the past three weeks, he has blood in his stomach when the nurses check before they feed him again.  Some days he has none and other days he has a lot of what they call 'coffee grounds' (dark blood that looks like coffee grounds).  He has been given ulcer medicine and that helps.  He doesn't always digest his food either.  The doctors want to keep some milk in his tummy because that helps to reduce the acid and it will also keep his intestines and stomach working.  But, they aren't sure why he is having these stomach problems.  Will also has a lot of secretions (mucus) in his nose, throat and lungs. Again, the doctors aren't sure why.  The nurses are suppose to suction him every three hours, but usually end up doing it every hour because he is so congested.  His chest starts to sound rattly when he needs to be suction.  It always amazes me how much they suction out of his nose.  Even some of the nurses who have been there for 30 years have never seen so many secretions from a little baby.  Will is also struggling with getting off of the standard vent.  He has tried the NIPPV (what we call the Scuba Steve vent because of the 'mask') and has lasted 48 hours for the longest stretch.  He tried it again last Sunday and lasted 4 hours and Wednesday he lasted 15 hours.  When they have to reintubate him (put the breathing tube back down his nose) it can be a pretty traumatic event for him (and me, as I happened to be there on Sunday when they did it.) He will usually spend the next few days breathing off of the vent, instead of breathing on his own.  He has some closure in his lungs, which is part of his chronic lung disease and having under developed lungs.  He is positioned in different ways to help with opening the lungs and he gets frequent x-rays to check the progress on his lungs.  In addition to these things, Will has been receiving blood transfusions almost every week for the past month.  Within the next 10-14 days, Will should have his tummy surgery to reattach his intestines.  We pray that everything goes well with this surgery.  Finally, the doctors are still keeping a close eye on Will's PDA (heart valve).  He had a heart echo (ultrasound) today and it showed that the he has a shrinking PDA (which is is good) and a slightly enlarged left atrium. 

Wow! It is shocking to see how many things Will has going on with him. I know that people are going to tell us that we need to look at the positive. Trust me, we do! But, it doesn't make any of this less scary and concerning.  Both Erin and Will are doing amazing, considering they aren't supposed to be in the world yet. They are growing, getting stronger and making progress.  We are proud of them and to be their parents.

Thank you for your ongoing prayers, support and kind words.  We do appreciate all of it and it helps to make this experience a little bit easier.