1:30AM:

Met with Dr. Mello after surgery. We had to walk over to CCMC (with an escort as I wasn’t released yet) as the OB floor phones get turned off at 10:30PM so he couldn’t call us.

Her anatomy: Dextrocardia (right sided heart). Unbalanced AV Canals. “L” transposition – her aorta comes off the left ventricle – one of those things where two wrongs make a right in her case and this won’t need to be fixed.

He had to fix some stenosis in her pulmonary artery.

“Very unusual anatomy – never seen anything like it before”

Started surgery at 7pm. Finished at 10pm. Had to make sure she wasn’t leaking before they closed up her chest. She has one drainage tube. Oxygen levels 75%-85%. She needed to be on the heart / lung machine for 80 minutes (when he repaired the pulmonary artery – this was unexpected).

She will need be on aspirin forever.

Expect her to be on the ventilator for 2 days.

1:30AM: Went to see Olivia in the PICU – room 306. I was very nervous to say the least. Didn’t know what to expect – but it was just Olivia with a small tube in her mouth and a bandage on her chest.

Nurse is Kathy. Dr. Len is pediatrician on the floor. Megan is the resident on call. They all told us how great she looked. She wasn’t “puffy” which I had been told to expect from the Heart / Lung machine.

10AM: I am released from Hartford Hospital. Wheel my stuff over to PICU and catch the doctors doing rounds in Olivia’s room. This was VERY helpful – I really enjoyed being around during rounds and tried to catch them daily for insight on the day’s plan.

They plan on weaning her off the vent today. She started out with the vent doing 20 breaths per minute and by the end of the day it was doing 10 with her doing the rest.

Meds:

• dopamine for BP.
• Milrinone for Cardio – decreases pressures in her major vessels.
• Morphine given “here and there” – not a drip. Olivia seems sensitive to it. They ended up giving her tylenol supositories instead.
• Sugar water for fluids

Nurses today are Kathy (another Kathy) and Tom.

Her BP is 95/56. Oxygen levels – 89% – 90% which is “high” Blood gases showing an oxygen level of 75% which is “great”.

The breathing tube was removed at 5:20pm and she was FIGHTING MAD.

Hi everyone,

We are here at the PICU (on dial up) and Olivia looks great. All of her vitals are steady and strong. They have already started weaning her off the ventilator and may even have it removed by this evening. To answer some questions….

Maddie is great and she is excited to see Olivia as far as we can tell. She will be coming home tonight for the first time since Sunday. We can tell that she is a little anxious about everything and a little unsure.

Olivia will probably be in the hospital for few more weeks at least. After she is recovered from the surgery, she will go back to the NICU for a period of time to build up weight and feed regularly. Once she is eating well, she will be allowed to come home.

Her next surgery will be in another 4-6 months. The shunt that was put in last night will be removed during this surgery. It is only temporary as the surgery that will be done (the Glenn) will remove the need for this shunt.

Thanks for all of your prayers….they are working.

-Arnie

Just an update to say hi!!!
I finally got a chance to jump online.

Just got off the phone w/ the PICU and Olivia is still doing great.

She’s on a vent but this is the first time since she was born. Considering what we expected at birth — we’re thrilled we made it this far without one. And there’s no way she would have NOT needed one.
So here’s what we know…

Dr. Mello finally took her down at around 6:30pm. It worked out (the delay) as my dad was able to bring Maddie up to see her before hand. To say I was upset when they took her over was an understatement — but Arnie walked her over to the OR with our nurse Jen and Dr. Heller (Olivia’s cardiologist).

They started surgery around 7pm and finished up the actual surgery at 10:30pm. However they had to make sure she was a-ok (no leaking, etc) before closing her up so it was close to 12:45AM before we got to talk to the Doctor.

As Arnie shared, Olivia has a very unique anatomy of her heart – something her surgeon had never seen before. Nothing that is a deal breaker, just very unusual. She ended up having to be put on the heart/lung machine for approx. 80 minutes to allow them to widen a pulmonary artery that was too narrow. They put the shunt connected directly to her Pulmonary artery so it’s not a classic BT Shunt or a Central Shunt – just what worked for her (I jokingly will call it the Mello Shunt). Her PDA (duct) was extremely large and unusually shaped so he closed that – explains why her O2 levels had been so great for the first few days.

After we met w/ Dr. Mello we were taken to the PICU. I was a nervous wreck not knowing what we were about to see. But Olivia looked just like Olivia but with a bandage over her chest and a small tube in her mouth.

Bottom Line on What we know:

Olivia has a unique heart but repairable w/ our current plan of the 3 stage surgery.

She has dextrocardia (heart on the right side). He wouldn’t be shocked if all her other organs are swapped but we’ll deal with that later (not anything to worry about).

She has Unbalanced AV Canals.

She has L Transposition meaning her aorta and pulmonary arteries are swapped. However, since she has dextrocardia two “wrongs” make a right and this won’t need repair.

That’s it for now – I’m going to jump in the shower and sit impatiently for Arnie to come get me so I can go kiss my little princess.

Love,
Tricia

They finally took Olivia over to surgery around 6:30pm. Arnie walked her over to the OR (at CCMC) with nurse Jen and our cardiologist. I was a MESS to say the least. Cried like a baby. Had to hold it together as my family was there including Maddie Rose.

They anticipate surgery will take 2-3 hours.

Olivia’s surgery will be delayed until 5:30 or so tonight. The surgery that was scheduled this morning is taking longer than expected.
Olivia is doing great though!

Olivia’s surgery will be around 1:00pm today.

Also, the doctors noticed another defect in Olivia’s heart, but this defect will actually benefit her and most likely make the third surgery much better.

July 19th, 7AM:

I called down to the NICU to see how Olivia is doing. She is showing some side effects of the PGE medication – sleep apnea. Because of this they turned down the dosage a bit. Still not needing the Vent. Her sat. levels are in the low 90′s

July 19th, noon:

Surgery tomorrow. Should take a couple of hours. They plan on doing it around 1pm.

Our little angel arrived this morning at 12:15 a.m. She is doing fantastic as is mom. Mom pushed for about 30 minutes.

Olivia Ann Belfonti weighed in at 7.7 oz and is 19.5” long. She looks like she could have been Madeline’s twin. Her oxygen sats were at 93% when I left there at 2:20 a.m. Which is REALLY good! She is pink and beautiful and perfect and will be seeing the surgeon sometime this morning to schedule the first surgery. Thanks for everyone for all of the support.