Big plans for the day fell to the wayside and very little was accomplished! It was actually quite stressful and we are all very tired. Brendan seems to be doing well on the new formula and meds. He is definitely having less episodes of the refluxing, although it makes it even more frustrating when he does because we are so eager for them to be gone.
I had to clean and retape everything on his face and give him a bath today and that turned in to a total meltdown for both of us! He is in bed now looking totally exhausted.
Trevor has done a ton of sleeping today, and is asleep again now. This most likely means he will be Mr. Wide Awake all night wanting to play! He slept 7 straight hours last night, so maybe he is having a growth spurt and needs more rest!

Being put in to bed usually makes Trevor pop his eyes open wide awake, but tonight he is drifting to sleep!

Cute monkey feet!

Brendan is given the chance to try his formula from a bottle a few times a day, hopefully to help wash down the acid in his throat and to help teach him how to eat normally. Early this morning he did very well, but tonight he was not interested, too bothered by the feeling of swallowing.

What day of the week was it again? I totally lose track, the time just flies by and the days are over before I know it!
I would say that Brendan was improved today. Not that he isn’t still an enormous handful, but he had some calm comfortable time that has been lacking over the last few days especially.
He felt good enough for the first time this week that we let him have some time with his brother again. If we can get him calm enough to put them together, then he really enjoys the visit and will just watch for a long time. If he is having a fit, there is no getting them to be nice together.

Last night the dose of Lasix that was added kicked in big time and Brendan had a major wet diaper overflow. The entire bed was soaked and we had to wash the sheets and the sling. We are on the watch tonight after today’s dose so we don’t have this trouble again!

Trevor is starting to work toward sleeping through the night!! He is moving from his every 3 hour schedule to going almost 4 in the mornings, wanting to eat every 2 in the evening and then for the last few days, he has slept 6 straight hours through the night. If he could just give Brendan some of these bottle skills!

Trevor better not let the dogs see his rear!

The long overdue visit from Trevor made Brendan happy today! I love how Trevor is holding on to his own pacifier.

Trevor wants what Brendan has, and not just any old imitation

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!