Home sweet Home

Huahua had one long day yesterday, arriving at the hospital at 6:30 am and leaving about 10 pm.  But she was a real trooper through it all.   We were determined not to spend the night and pushed through to get discharged.  The results of the cath were encouraging that she appears to be a great candidate for the next surgery which will be the Fondan.  Huahua's single ventricle, single atrium heart lines up in the middle of her little body.  Her arteries looked to be good size going to the lungs.  The were happy with the pressures running around 11-12 (normal kid's heart runs around 5).   Her inferior vena cava, the vein which will be re-routed with a shunt to the pulmonary artery then onto the lungs to create a passive flow for the lower half of her body during the Fontan comes up mid line, another anomaly of her heterotaxy syndrome.    Her liver also is situated mid line as well.  So uniquely created!
She came through the anesthesia well and continued on a strong sedative throughout most of the night.  Since the cath went through her main veins/arteries they wanted her to remain still to prevent bleeding.  She would peek awake for moments here and there and ask for mama and quickly be soothed back to sleep.  So thankful she trusts us and knew she was able to trust us to walk her through this.  Her remarkable verbal capability is so helpful in that she can ask for help and feels confident in telling us her concerns.   We will speak with the surgeon on Monday to discuss her surgery more in depth.  It is scheduled for May 14.

 First trip to the races.  Jackson loaned her a blue race hat.  She wasn't overally thrilled about watching the races....she prefers to ride!

Patiently waiting for something to eat.

Dressed up like a princess.

Huahua likes to lick the chocolate off the top of the bread.

Yep, she loves to ride....adrenline junkie like the rest of them :)

Movie Night

Snuggled with Justin having some popcorn and a movie.  Apparently she thought if he had no shirt, she should follow suit!

DIagnostic Cardio Catheterization

Today we are at the hospital and Huahua is undergoing a cardio catheterization to map out her heart in anticipation of her fondan procedure.  She was a trooper this morning as she had to wait until after 1 pm due to technical problems with the cath machine at the children's hospital.  They transferred her the the adult cath lab and is currently under general anesthesia.  We requested Versed (valium)

Huahua don't do drugs!  Since she can repeat it....she did...in her slurred speech!

this morning to ease the IV going in.  She was still aware things were not as they should be but thought it was funny and gave us lots of unique looks and faces.  Her funny personality came through for the first few hours and then turned ugly, and tired due to getting up at 6 am when the meds wore off.  She fell asleep until minutes before the procedure.  Praise God :)  I carried her all the way to the adult unit and the anesthesologist allowed me to hold her in my arms till she fell completely asleep as we sung " You are my sunshine".  When he said they could take her now,  I paused and I gave her one last squeeze and snuggle.    Passing your child over for any procedure is hard, but for some reason this one seemed hard knowing we just established this bond of trust.   I know she will not be physically hurting when she comes out, but maybe just knowing what lies ahead for her, is what really hurts the most.  And so I must rely on our father in heaven who has so graciously given her to us for however longs he will allow.  And that is where we will be thankful and treasure every moment, every smile, every giggle, every laugh and every bit of joy she brings.