Our baby girl sustained through the night. Her blood pressure continued to be low early this morning so they gave her more blood. The pressure has been fine ever since. Her c02 gases are back down to where they should be and her O2 is still solid.
Ella looks good this morning, a lot better then yesterday. She was awake when we arrived at her bedside. She been on a double dose of fentanyl since the surgery for any pain. Her incision looks a bit more red today, but that’s normal.
Dr. Kays indicated that a chest tube would be inserted on Wednesday to relive the fluid in her chest. This is typical with severe CDH cases. He’s also planning on removing her ECMO cannulas then as well. I can’t wait for her to get these out! These cannulas have minimized her ability to turn her head and restricted the way her body can be turned. Once these are removed, they’ll be able to let her rest on her side and belly. This should also help with her fluid build up.
Late yesterday afternoon, Dr. Kays shared with us the details of the surgery. He confirmed that as severe cases go, it was textbook: the surgery went very smooth and there were no complications. (Praise Jesus!)
He confirmed the severity of Ella’s CDH. Only about 5% of the left side of her diaphragm existed. He had to stitch in a pretty large GOR-TEX patch to fill the space.
He also had to use some of the patch when closing the incision, as to not put too much pressure on her organs. You can’t see this patch though because it’s below the skin, but stitched to her abdominal muscles.
We asked about how her body would respond over time to these patches. The hope is that the body will grow around them without issue. This isn’t always the case though.
At the moment, there are risks of a possible infection. As Ella gets older, she’s going to grow, but her patch is going to stay the same size. For this reason, there is a chance of a reoccurring diaphragmatic hernia which would require another surgery.
In the middle of my head spinning with all this information, Dr. Kays stopped and asked, “And what do we call surgery for a reoccurring diaphragmatic hernia?”. When I couldn’t remember the answer that he had previously shared with us during our initial visit in June, he replied with a smile, “We call that a privilege“.
To be blunt, it is called a privilege because you can’t perform this surgery on a baby who doesn’t survive.
Something we did learn is that not all of Ella’s organs were put back in the “right” place. For example, due to restrictions of her intestines developing in her chest, her colon and large intestine had to be routed a bit differently. Her appendix is actually on her left side! These are some of the reasons for future problems like reflux, but we pray that these would stay to a minimum.
We praise our Lord for the successful surgery yesterday and are so blessed to have Ella with us. It blows our minds to see how God is using this time to stretch us and touch so many other lives.
Please continue to join us in prayer for our baby girl.
We love you all.
BTW: In the middle of writing this post, Dr. Kays walked in and said that he is “pleased” with her progress and felt good about her current stability. Go Ella!
P.S. Tina and I had slept better last night then we had in awhile. We got a solid 10 hours. (yay)
