The doctors decided to move her fetal echo up to yesterday (Friday) - and we didn't get a full update until this morning from the cardiologists and the doctors. We were starting to get the feeling that our team of doctors thought it was connected to the heart and our cardiologists disagreed. BUT this morning - everyone is on the same page.
Basically Lucy has three items they are watching on her heart.
1. An abnormal aortic valve. This is NOT connected to the breathing thing and might not ever be a problem. They will continue to monitor it as she grows and gets older - it might mean nothing or it could mean surgery. They can't say for sure nor are they concerned about it.
2. A narrowing section in her artery surrounding her heart. Its very minor and they have no concern. But like the valve, they want to continue to watch it and monitor it. It could mean they have to do something in the future, but nothing right now and it isn't a threat. But it is connected to the 3rd item.
3. The open duct - it is still open and hanging out. It still might close on its own - but they agree this is probably one of the main factors of her quick breathing and not being able to handle her fluids in her body. This is connected to the narrowing artery because they want to make sure when/if the duct does close on its own, it doesn't close goofy on the artery or make the narrowing section more of a problem. As of right now, for the duct, they do not plan to have a procedure or anything soon. They want to continue to have fetal echos and keep checking (and hoping) it closes on its own. Maybe down the road we will have to close it or I believe IF we have to have any surgery - they can fix all things at once but ONLY IF needed.
Our next echo will be on Monday.
Their theory is basically - they think in the beginning - she didn't get squeezed enough and was born with so much fluid. Heck - look back at her first pictures - she doesn't look right - her belly is all bloated and she is too. Now because her heart is a tad bit different - you combo extra fluid with a different heart and you have quick breathing and the issues Lucy is having.
The plan is to continue diuretics to get the excess fluid out and then hopefully after a few more doses - she can maintain it on her own. We will probably go home with some doses of diuretics but its not something she can stay on for too long as diuretics can be tough on organs.
As now she has been on diuretics for 3 days - her breathing has maintained in the 60s, if not a little lower and her blood is circulating great. Today they officially said they will take her off the oxygen and see if she can maintain the breathing and other levels as they think she can. Heck, even right now, she is crying and she is taking huge deep breaths and she has some LUNGS on her!
Next steps are feeds. She is on only 1 ounce through her nose still, but they don't want to shock her system - so they will increase a little bit, but not much today. Then if Lucy maintains off the oxygen great, then they will increases feeds tomorrow and take her off her IV. If that all goes well, then we could try bottle feeding on Monday or Tuesday and that would be the final step to go and MAYBE - just MAYBE we can take her home! I know here, they do go from the NICU to what they call Rainbow 4/Step Down or the transitional unit. I'm hoping that happens when we move to bottle feeding!
Our goal - get her home! We have a LOT of doctor visits in the future - but so far we are very impressed and love the doctors here. They love Lucy too!
At least now, we can hold her and that helps a ton. We also had a first of Heidi holding Lucy. She didn't want to do it on her own - I think all the cords scared her. But she was all about it holding her with dad. Love it!
I'm on Chris' laptop and it won't keep my pictures facing the correct way. Sorry - you have to have wrong facing pictures.
To recharge our batteries, we decided to go to the local Oktoberfest last night. It was fun! I wasn't able to partake in the beer - still on pain meds - heck - I had a 10 pound baby! And someone needed to drive the happy gang around and I was happy to do so.
Heidi was ALL about dancing and doing the polka! She had a blast and kept going up to each one of us to take her around the dance floor. It was good to get out and I think everyone had fun! I think it was what Heidi needed too. She asked this morning if she could go back :)
Our Lucy is getting better! I'm hoping we continue this positive path and we can actually take her home!!!
