The "wait" continues but in a whole new way.....

We have had a lot transpire over the past week.  Hannah has had her monthly labs done and weight checked.  Unfortuantely, things aren't looking good:(.  Her bilirubin is still on the rise, she continues to be anemic, retaining fluid,  and hasn't gained any weight in over a month.  She just turned 7 months old and still only weighs 13.5lbs. Although, the unbelievable thing is she continues to smile through it all!!

We met with our GI last week and with the GI at Children's today.  The good news is that we don't have to put her on a feeding tube quite yet, but the bad news....she is going to get evaluated for transplant and listed in the coming weeks.  It is hard to believe that this all happened so quickly, but part of us knew that since she has developed the fluid on her abdomen and showing no signs of weight gain.  Of course, I wanted to sit there and just cry for my little girl but I think I did my fair share of crying last week, I prepared myself for this news. We knew walking into the appointment today, this is what we were going to hear. Honestly, at the time, all I could think about was how happy I was that we didn't need to put her on a feeding tube yet!  It's the little things, right!

I am anticipating the coming weeks are going to be crazy as this all settles in.  I still look at her when she smiles and think, "How are you possibly this sick?"  It has to be a nightmare, and I am going to wake up at any moment!  Unfortunately, we will not be waking up from this nightmare until that day comes when we get the "call" for Hannah's second chance at life and she is returned to our arms.  We will live in this nightmare for as long as it takes until Hannah is healthy again.  There is a whole new life waiting for her after her transplant, and I truly believe, in my heart, she is going to make it through this with flying colors!

I wish this was a more uplifting post but like I have said from the beginning, "It is what it is and we will get through it!"  We have already become so much stronger, not only as a family but as individuals.  It is amazing how your whole life changes in a moment to never ever be the same again.  Then in that next moment you realize that, this is the way it was meant to be, and we will overcome it as long as we stay strong, continue to love each other, and stick together. So one thing I have learned thus far, is to live your life day by day, and remember it only takes one moment for everything to change!

Thanks to everyone for their kind words and support! We will continue to keep you posted as things progress.