This was a huge eventful day full of changes! Early this morning, we had a few ladies from the state early intervention program come to the house to do an evaluation of services needed by the boys. Trevor made a good impression and should not need any services going forward. He is showing signs of all the developmental things that are appropriate for his age. Brendan was just a ball of discomfort and crying while they were here, so he did not get a good eval, they will have to come back for him. But they did get the ball rolling on his paperwork so that his services can begin as soon as they are needed.

Brendan has struggled so much this week, so instead of waiting until next Tuesday, we went in to the children’s hospital today for his appointment. They did his echocardiogram to be sure that his issues were not related to cardiac failure. His nurse came for a visit early this morning and he weighed 9lbs 9oz which is up quite a bit. We were a bit worried that this was water retention rather than good weight gain. In the end, they decided that it was 32 grams a day gain and that it was not outside what is considered normal, just over an ounce a day according to the hospital scale.

The good news is that the cardiologist was really happy with his echo. His valves are not leaking, his septal defect is wide open. The mechanical function of his heart was strong. His lungs sound nice and clear.

They are making a lot of little tweaks to try to help him feel better until he gets to surgery day. Last night in an effort to help him stop being so uncomfortable, we took him off milk entirely and just gave him Pedialyte through the night. Then today they have put him on a new formula and we are going to forego the breast milk to see if there is a food sensitivity issue causing his struggles. The Elecare formula is hypoallergenic and gentle and easy to digest.
They are putting him back on the Lasix two times a day. They have slightly increased his Enalapril just to adjust the dose for his weight gain. They upped his Prevacid to two times a day and we are continuing the Zantac.
We are also going to try to keep his sats up a bit higher, in the upper 80’s instead of upper 70’s to see if maybe he gut is not getting enough O2 to work properly.

He is scheduled for his heart catheterization on February 14th. They will measure his pressures and take lots of pictures. Then that Friday, the doctors will all conference and make decisions about his surgery. They were talking today about not only doing the Glenn, but a procedure called a DSK, or Damus-Kaye-Stansel. I’ll find a good info link on that tomorrow. If things go well, we should get a surgery date when we go for the cath. They are looking at maybe the first week of March now. Brendan will have possibly an overnight stay on the 14th, and then after surgery they are looking at anywhere from 10 days to 3 weeks stay. He could come home on oxygen for a short time, but should be able to wean off of it quickly.

Trevor got to spend the afternoon hanging out with Gramma. They made meatloaf and chocolate krispie treats and he took long naps.

Trevor got some new crabby-jammies. He still won’t smile for the camera, but he is getting awfully flirty, working the grin to his fullest advantage.

We didn’t bring the whale stroller today, Dad just carried Brendan for his appointment.

Though he was really upset to get weighed and measured, he was really calm for his echo, and then even more calm and happy for his visit with the doctor.

All snuggled in at home. getting a belly full of the new formula. He has had a few major refluxes tonight. We were told to expect about 3 days before all of these changes would really show an effect. Let’s just hope for the best!!

Gramma brought the boys a clock for in their bedroom and it is just the cutest thing. The dragonfly is a pendulum that swings as the clock runs. It goes well with their lamp and looks super cute on the wall now!