I’m sitting here in the quiet of our hospital room looking out at the beautiful skyline of the city.  Annabelle has gone to sleep and Mike is back at the apartment resting for the night.  As great as this hospital is we are so ready to be home (at least in our little apartment for now).  If all continues to go well then tomorrow we’ll be “going to the zoo” in the afternoon.  We dare don’t say the “D” word that means getting out of the hospital because last time we said that Annabelle got rejection.  So around here in 7B we just say that we’re “going to the zoo.”  I’m working super hard to get the apartment all cleaned up in preparation for Annabelle’s arrival!  The pack-n-play and play gym are all set up and waiting for her!  Here’s hoping we’ll all be together tomorrow evening at the Ronald McDonald House! 

Annabelle is continuing to get better each and every day.  Her liver numbers are continuing to trend down, and she’s almost over this little blip of rejection.  She’s getting a little less predisone now too, so she’s also been a lot more happy the past two days.  I just love her smile!

We’ve also completed all of our parent education teaching to prepare for going home.  They have equiped us with a detailed medication sheet (times/dosage), lots of syringes, and the outpatient pharmacy will have all of her medications ready for us on our way out.  I even administered my first Lovenox injection last night (it wasn’t easy emotional but I made it through!).  I gave myself of Bead of Courage for that one!

Tube wise, Annabelle will go home with one JP drainage lines; hopefully it will be removed in a few weeks.  However, her central IJ line in her neck did get removed today!  It was starting to look a little rough so I’m glad they pulled it so it wouldn’t get infected.  Now all medications and nutrition are taken through her g-tube or by mouth (with the exception of the Lovenox injection).  Genetics has been working hard on the right formula mixture that pleases Annabelle’s metabolism but also pleases the transplant team.  We’ve had a different formula receipt everyday this week, but hopefully we’ll leave with something consistent.  We’re still not sure when Annabelle will start eating solids again but we’re hoping that will be soon too (the more foods she eats by mouth the less formula she’ll have to take).  Annabelle has also started faster bolus feeds (faster rate over set times versus an on-going continuous feed), meaning some parts of the day she is now tube free!  Mike took her for a stroll this evening when she was disconnected and she loved it!

So it looks like we’ll be starting the next phase of recovery over at the Ronald McDonald House very soon.  This will give us so much more freedom as we’ll get to go out some and explore the city (in open air, non-crowded places of course!).  Plus, we’ll have more privacy verses living in the hospital!  We’ll still be coming to the hospital outpatient twice a week for bloodwork and transplant clinic so they can monitor her closely.  She’ll also be seeing genetics fairly often to follow-up on her nutrition and we’ll likely get outpatient physical therapy for her so she can continue working on her physical development.

We’ll most likely be in Pittsburgh another 6 – 8 weeks until they feel like she’s stable enough to go back to NC (pending no further complications).

Thank you for your many prayers!

Prayer Requests:

1.) Continued prayer for the donor’s family.

2.) Continued prayer for no infections, no clotting, and no future episodes of rejection.

3.) Continued prayer that Annabelle’s drainage would clear up so her JP drain can be removed.

4.) Continued prayer that Annabelle’s liver numbers would continue to trend down and that her body would accept this liver as her own.

5.) Pray that we get to “go to the zoo” tomorrow! Pray that there would be no setbacks as hospital time runs so much different than regular time. 

6.) Pray for an easy transition to the Ronald McDonald House.  Pray that we would feel confident and equiped to administer all of her meds. Pray that Annabelle would feel comfortable in her new environment and be able to sleep well in her pack-n-play for the next couple months.