May 10: Starting to Treat Makenna

 

 

So, babies born with trisomy 18 can have a number of different issues.  The most common issue that they die from is basically congestive heart failure or apnea (forgetting to breath).  Makenna was born with some of the classic signs.  She has pointed elf-like ears and her ears are lower than normal which indicates she might be partially to totally deaf.  She has overlapping fingers that clench.  Her heals and back of her head are over defined.  Her kidneys seem to function but she has extra cerebral fluid in the posterior of her brain.  Her eyes are normal.  However, her nasal passage is completely blocked.  The bone never formed the hole.  Makenna was born with three holes in her heart;  PDA, VSD and ASD.  The VSD and ASD could be addressed at a later date, but the PDA could not.  All babies are born with this hole, but it usually closes within a couple days after birth.  Makenna's did not.  The doctors told us that sometimes a medication could be given to infants with a PDA hole and it sometimes closes the hole without having to do surgery.  We opted to try that.

 

Makenna was given one round of Indomethazone on May 10.  There was no change, but we could try one more round.  So, the next day she was given a second round of the drug.  On Monday May 13, the cardio echo showed that the hole had closed some and they thought it was enough to not be causing much of a problem.  So, we had avoided surgery so far!  Yeah!  Her breathing seemed to be a little better as well. 

 

 

 

 

Over a week had gone by and I had not gotten to hold her yet....but on May 10 I finally got to hold Makenna!  It was quite the production.  The nurse and someone from respiratory had to help.  The tubes from the ventilator were taped to me and I couldn't move vary much, but it was the best experience.  She was next to my skin to keep her warm.  I was supposed to hold her for one hour, but I got to hold her for almost two.  She did so well.  Her breathing and heart rate was better as we held each other.  I talked and sang to her.  I seemed to breath better after being able to hold her.