Enjoying time at home

In 11 days Ellie will be heading back to the OR to have her malrotation corrected.  At our most recent hospital stay I was distraught that we were admitted to the hospital again and Mike told me that we just need to enjoy the time that we have with her at home and that is exactly what we have been doing.  We hope and pray constantly that this next surgery will not put Ellie out as bad as her corrective heart surgery.  But we do expect her to be in the PICU for a few days and it might take her a little longer than normal to recover as we've seen in the past.  In the meantime we are enjoying her endless teethy grins and watching her roll all over the floor as she gets tangled up in her oxygen tubing.  She will be crawling very soon.  We like to mimic each other smacking lips and clicking tongues.  Ellie is THE BEST baby despite all that she has been through.  

Wet, but NO TUBES!

  

Say CHEESE!



Tangled

The biggest challenges we have had during this time are her feeding tube and her pulmonary hypertension.  Ellie's pulmonary hypertension is under control with oxygen and viagra which she gets every 6 hours.  We are looking forward to the day when we don't have to pull her oxygen cannula with us everywhere we go.  Even though it is 50 feet long, we still have our limitations.  Ellie had a sedated echo this past Wednesday and it looks better than her most recent echo.  The heart is squeezing well, the valves all seem to be working good, but pulmonary hypertension is still there.  We have never been told how long to expect until this all goes away because no one knows, especially with Ellie.  We were thinking really optimistically when she got released from the hospital a couple of months ago that she would be back to normal within 6 months.  It has already been 2 months and it doesn't seem like there has been much progress. 

She has failed a couple of swallow studies and is not eating very much by bottle or by spoon.  I blame that on the feeding tube.  We are anxious to get rid of it as quickly as possible but with this next surgery coming up there is no rush.  We might be starting at square one all over again.  I've been trying to do a little research on the internet as to how we can help her get weaned off of the NG tube.  It seems very daunting.  And now, instead of thinking that this was a temporary thing, it seems like it might take years unless we have some good intervention.  I'm anxious to get right on it after she recovers from this next surgery.