We had our follow up with Dr. Su regarding Ella’s heart. Last time we saw him, he was concerned about her pulmonary artery. That was the big factor for if Ella was going to need surgery right away and if that would mean multiple upkeep surgeries over the years. The good news is, the pulmonary artery is growing great and is no longer a concern for the doctor… the bad news is, he’s now very concerned about the pulmonary veins.
They have never been able to get a good picture of the pulmonary veins for the first two echos but at that time the veins would’ve been small so the doctors weren’t worried about them. Now, Ella is big enough that they should be able to get a good look at the pulmonary veins… but they are nowhere to be found.
This means either Ella does not have the pulmonary veins that pump blood to the lungs, or that the veins are behind the heart instead of in front. By tracking the blood flow, it seems that they are in the back and moving blood, just not depositing it in the right place. Either way, this is something that may require surgery right away in order for Ella to breathe well.
There’s still a small chance that the veins are there and in the correct place but the doctors will need to do an echocardiogram on Ella soon after she’s born. Depending on what that shows, she may need to have immediate emergent surgery within a few hours of birth or possibly the next day.
If Ella has surgery right away, she and Livi will be in two different wards. Assuming Livi does not need to stay at the NICU for regular premie stuff, she will be with me at the U of U for a couple of days. Ella will be at Primary’s, first in the CICU right after the surgery for a few days, then at the surgical floor for another few days for more post op recovery , and possibly at the NICU after that if she needs more time to learn how to eat on her own. Sadly, the twins will not be able to see each other until we go home. It breaks my heart a little bit but it makes complete sense that they don’t want Livi bringing in new germs or picking up germs from the patients in the NICU.
Because of all this, Jason and I will most likely need to be up in Salt Lake for the first couple of weeks after they’re born. We don’t want to be an hour and a half away if something comes up with Ella. More then likely we’re going to be staying at the Ronald McDonald house down the street until Ella is out of the woods.
Jason and I feel slightly blind sided. We were so thrilled after our last Cardio appointment with the news that Ella probably wouldn’t need surgery for awhile…then we go in this week and now surgery is back on the table. We’re grateful that we’ve been able to learn so much before Ella is here but it’s still hard hearing all the different scenarios that could happen when we have to wait to see what the reality will be. Until then, Ella is kicking and squirming and as happy as can be. Hopefully when she comes out she’ll be able to stay that way!