Well, true to form, Lilah has yet again stumped the medical team. The probe test showed Lilah has the same amount of reflux as any normal baby. The good news is that she will not be getting the Nissen when they do the g-tube tomorrow! The bad news is they officially have no idea why she is having trouble eating. They will be sending blood work out to check chromosomes but the results could take up to a month.

So, g-tube surgery is set for 11:45 am tomorrow. I will post when she is out.

Thank you for all your prayers. Not doing the Nissen is a HUGE answer to them.

Lilah's probe test ended at 11 AM today. She was pretty miserable with both nosterils full of cords and tubes. We are waiting for the results and expect them to tell us the same amount of information all of the other tests she has had: none.

She is still set to have surgery on Froday afternoon. I know I can speak for Dave when I say we are both looking forward to the end of this particular road.

Alec is doing great! He slept six full hours last night. He also figured out that if he moves his feet, the bouncy seat lights up and makes noise. Here is a quick clip:

Turns out there was a little disagreement among the doctors on whether or not the probe test would give us any new information. The debate lasted long enough that there was not time to do the test yesterday. They will hopefully start it today. We are hoping it will show is how far up the reflux is coming. They are worried it will get into her lungs and cause aspiration or pneumonia. If this is the case they will most likely recommend doing the Nissen proceedure. Either way, Lilah is set to have the g-tube proceedure on Friday afternoon we just have to decide by then if the Nissen is something she needs.

The tissue samples all came back clear of infection. The next step is a g-tube and possibly a proceedure that would restrict the reflux from escaping the stomach. We have some research to do and a lot of questions to ask. Regardless, we are looking at some sort of proceedure by the end of next week. The recovery time for both is about four to five days and then she would be coming home.

We should know more by Tuesday.

The scope showed nothing in the throat that would explain the pain Lilah is in when she eats. They did take tissue from different places to look for infection and we should have those results by next week. If they come back clear then she will be most likely be getting a G-tube.

Thank you for all your continued prayers and support!

Tomorrow at 1:30 pm they are going to sedate Lilah and scope her throat to see if anything is going on in there that they could not see by X-Ray. She continues to have trouble with feeds and is now taking anywhere from 10-20 ml each time.

They will take some samples of tissue when in there and run some tests. I will keep you posted!

Lilah continues to hover around the 20-30 ml mark for feeds. They are going to wait the weekend And take her off the thickened feeds since they are not helping.

Now that she has been off thrush treatment for a few days they have re-cultured her tongue. The last time they cultured it, she was on meds.

We are taking more and more with the nurses about what it might be like if she ends up being sent home with a feeding tube. It feels like we are getting to the end of the ideas to try.

We have had some good discussions with the staff and we can all agree that she just seems to hit a wall during the feeding that she just can't take anymore, however we know her tummy can take the volume it needs to because she can take 65ml and still be comfortable. She is a mystery!

At home, Zeke decided to try to give Alec a bath. I caught him licking the folds of Alec's neck.... Yuck! 😝