Isn't She Lovely?

Of course I'm biased and blindingly in love with my daughter and all that other totally partial stuff, but the picture of her that Brian took yesterday is my favorite to date.  It also helps that her ridiculously large grin is because Brian figured out if mimics the snorring pattern of the 3 Stooges that Olivia finds this to be the most hysterical thing that she's ever heard. 

Unfortunately this beautiful smile and great mood didn't last all day because we went back to trying the formula fortified breast milk.  Bottle 1 went down all right, she only took 2 oz but I didn't really worry about it because I figured she needed to get used to the new taste.  Bottle 2 while we were at dinner with Grandma & Grandpa went down even better, she took all 3.5 oz.  However, once we were in Babies R Us getting a few things, the whole situation got a little interesting.  First, she was fussing because she had a wet diaper, so I changed her, but as I was changing her, she started thrashing around which is never a good sign. 

I picked her up only for her to really belt out some high pitched crying and I could feel her tummy fairly hard against me.  I looked down at her and she was turning very Smurfy from forehead down to neck.  I went over to Brian to get some Mylicon from the diaper bag, which of course he was in the midst of exchanging and we had to root through an entire shopping bag full of stuff before we found it.  We dosed out the Mylicon, I gave it to her and put her pacifier in which lasted for about 30 seconds before I heard the trouble coming.  Oh yes, projectile vomit in the middle of the Babies R Us.  We had to improvise and strip the little lady down in the middle of the store and make sure that no one slipped in her puddle of formula (sorry for the image).  We hightailed it to the car and Grandpa took over as wheelman  so Brian and I could be in back with Olivia in case she had another episode.  Thankfully she seemed much happier since her tummy was rid of that formula and she was smiling by the time we made it back home. 

The fussiness wasn't quite gone though, even though we went back to regular milk again she had another melt down at 9 and again at 1 am.  We had to give her Tylenol which I hate to do because I don't want it to become ineffective for her when we need it for pain management after the Glenn, but she was exerting more calories than she has been taking so we needed to quiet her down.  This morning it seems that things are going well with her and Nonna and the doctors have already said that we should just leave things where we are right now and re-assess on Friday.  If all goes well tonight we'll be able to take a nap together, which if I haven't mentioned before when Olivia falls asleep on me that moment becomes one of the best moments of my entire life each and every time.  I love to feel her little heartbeat on me and take it all in.

The Glenn

Game on.  Please know I say this figuratively as I am not looking forward to the Glenn surgery but I am looking forward to Olivia being 2/3 of the way done with her surgeries by the end of the summer.  We are set to go on August 5th.  I am not nervous, at least not yet about the prospect of going through this all again.  We were told to expect anywhere from around a 4-6 day stay in the hospital provided all goes well with the surgery.  I already know from the Norwood recovery that Olivia has plans of her own and will do what she sees fit the duration of the stay. 

Brian's last day in the office for the short future will be July 30th.  After Olivia has the Glenn he will be staying home with her using FMLA during recovery while I'm back in the office.  I have no worries, Daddy and daughter will have a ball together spoiling each other with all the individual attention to one another.

Our pre-surgical appointment is on the 2nd and hopefully it will be all green lights.  We know that she needs this procedure to continue with her fight.  Her color isn't as good as it once was and her sats are starting to creep down as she continues to outgrow her shunt.  Last night I laid her on her Boppy and she lifted her little head all around to check out the world.  It was one of the more pure moments of joy that I have ever experienced.  I also know that without grief I would not have as much appreciation for that moment of joy. Currently one of the heart families that I know through the blogs is undertaking the fight of their life.  Their little boy Luke has a particular difficult case of HLHS and the prognosis is grim right now unless "a miracle happens" according to the doctors.  All of these heart babies are miracles and I can only hope that Luke's family gets one more miracle for their team. 

In preparation for Olivia's surgery, we are going to donate blood for her and have it set aside.  If you are local, please feel free to donate to her cause.  Any Lifesource in the Chicagoland area is acceptable 3-6 days prior to her surgery date.  She is A positive and can accept A blood (either positive or negative) and Type O as well.  If you're not a match but still want to donate just as a gesture, that is soooo much appreciated as the blood banks always need donors.  I for one have never donated before and am looking forward to making my first contribution.  It's just another way that she has changed the way that I think, I don't even know if I'm a blood match and I don't care.  If Olivia can't benefit from my blood, someone else in need will.  She changes my life on a daily basis.

Cath Results

We have been in recovery with the Munch now for about 2 hours and all is well.  She was super fussy when we first came in and her poor little voice sound like that 80 year old woman that's smoked all her life once again.  The nurses explained that she was probably parched from being on the vent and wanted us to start giving her Pedialyte.  It was slow going since she's never had it before.  After she had about an ounce she got extremely fussy and threw it all up but had a few nice burps in there too.  Apparently she just had some extra air in her tummy that she needed to get out in a bad way.

The results from her cath were very positive and didn't require any intervention.  She does have some narrowing of her left pulmonary artery but we've been told that's pretty common with these hypoplast babies.  It's something that they will monitor closely and if necessary balloon open during the cath getting her ready for the Fontan (surgery #3) because they will go in from a different entry point.  There was a small difrence in pressure readings from the top of the aortic arch to where the arch is grafted on the Sano shunt, but they didn't see any narrowing so there was nothing to balloon.  Again, these are things they will watch but no cause for alarm.

Assuming her vitals and subsequent feedings go well, we will be out of here around 6pm tonight.  I for one cannot wait because she just looks uncomfortable with all the wires and her poor little arm strapped to an immobilizer.  Don't worry Olivia - Mommy and Daddy are going to bust you out of here!