4D StepDown

Jacob moved to 4D StepDown on Monday around noon.  StepDown is the stage between critical care and parent care where they ensure that your child is ready to be moved away from the constant one on one supervision, and they begin to prepare parents for caring for their child on their own.  The first day in StepDown I was feeling very unsettled, it was a new room and new atmosphere and much more relaxed than CCCU.  Mostly I was feeling unsettled because for the first time since his birth, Jacob didn't need to have a nurse focused on only him 24 hours a day - the StepDown nurses have two patients at a time.  Jacob's oxygen levels have been holding strong, and he had a complete echo to examine the function of his heart today.  The preliminary report of that echo looks great - we will have the final report tomorrow.  Jacob was able to come off the morphine when we moved to StepDown but had to be put back on it in smaller, less frequent doses because of showing withdrawal symptoms again.  In a few more days he should be finished with the morphine, hopefully.  I really don't like how drowsy it makes him.

If all goes well, parent care is looking possible for tomorrow or the next day.  Cross your fingers and say a prayer that we get there soon! The number one issue standing between us and home is Jacob's feeding.  He is still fed through the NG tube every 3 hours, a special mixture of breastmilk fortified with formula for calories.  Jacob tipped the 9 lb mark yesterday, so he is slowly gaining his weight now.  We have twice daily sessions with the occupational therapist to work on his feeding - bottle feeds first, and if we are successful with that then possibly nursing.  Right now, with a lot of patience and coaxing, if Jacob is alert enough he can drink about 15 ml from a slow flow bottle - any more than that and he starts to gag and may vomit.  The gagging and vomiting are a major issue, even if he is lying in an upright position in his bed for a NG feed that is stretched over an hour.  We have to do laundry every day because of his vomiting.  Thank goodness for Ronald McDonald House and their quick washer/dryer machines! The most likely scenario for Jacob is that he will go home with the NG tube in, and have a combination of oral and NG feeding.  Besides the gagging and vomiting the other major issue for Jacob's feeds are that working at a bottle tires him out quickly.  Heart babies do not have the stamina of normal babies, and this can be built up over time but for the moment it is a major ordeal for Jacob when he has to work to get his food.

I miss Georgia so much, it breaks my heart.  I think about her constantly and tell Jacob about her constantly.  The Sunday is Mothers Day, and I am incredibly blessed to be sharing it with my son who has made it through unbelievable hurdles in his first 34 days of life.  But it will be my first Mothers Day without Georgia.  It's going to be a tough day for this Momma.  More than anything I want to bring my boy home, and have my family all together under my own roof.  Is that so much to ask?

I'm trying to focus myself on the little victories that Jacob is marking each day, and holding on tight to anything positive that the nurses and doctors have to say about his progress.  Sometimes I get ahead of myself and want to be in parent care NOW or home NOW, and then I have to step back and once again realize that this is not a normal infancy for Jacob.  He's a very special boy, with an incredibly complex heart, and nothing since his birth has been "normal".  On my good days I feel like we can just create our own version of normal - and a day filled with baby cuddles and kisses is a great day even when it takes place inside the walls of a hospital filled with sick children.  Jacob has taught me the value of life, and of living for the moment.  I am longing to show him the world outside of his hospital room.

Jacob's night nurse came in with a Superman shirt on today.  I shared with him the story of the superman symbol on Jacob's open sternum after his first surgery, and how it has become a symbol and nickname for my baby boy and his strength.  I hope that my own strength is enough to give Jacob all that he needs to grow and be a healthy, happy boy with half of a normal heart.

Good night Georgia and Jake.  Sweet dreams.  Momma can't wait to be able to spend the nights with both of you, and to be able to check on you whenever I feel the need during the night.