“21 32 55 Set Set Hut Hike. Why is the football attached to my butt?”

A day later, things are back to normal. Cole is well, Cole again. Full of life and a eating machine. Lasik is a lifesaver.

Cole: “What me have trouble breathing? Fogetaboutit”

Our feelings were warranted about Cole acting funny. We had our peed appointment today. The first thing Dr. F says when he walks in is: “Cole is retaining fluid“. Cole’s was definitely working harder to breathe today. His liver was a little enlarged as well. He immediately called the pulmonologist to come up with a game plan. We put him back on lasik today to get the water off his lungs. Hopefully he will be ‘Old Cole’ again soon. We aren’t going to try to bump down his O2 again for a while. As far as we are concerned, he will be at .5 liters for at least the next month (so that talk about getting him off O2 this month is out the window). There were talks about using steroids again, but we don’t need to talk about that for a while.

Paige on the other hand looked good. She looked so good that Dr. F only wants to see Cole next week. Paige has also entered into the 10 pound club today. Can you believe she is over 8 pounds heavier than when she was born? Cole is at 9 pounds 8 ounces, but since he is retaining fluid, that weight is kind of inaccurate.

It almost feels like we are back in the NICU with the ups and downs and uncertainty awaiting us.

Another day, another video. This one is of me trying to put Paige down for the night.

We had our follow-up swallow test for Paige today to see if we could reduce the amount of thickener in her feeds. It turns out she is still silent aspirating. In fact we are going to have to thicken her feeds more. Poor girl. I don’t know how she is going to handle the thicker feeds, it’s already so thick (how many times did I use the word thick?). We have a follow-up with the ENT to check her vocal cords in about a month. Then we will have another swallow test in 3 months. So we are in stand by mode.

The appointment was at Phoenix Children’s so Tobie was able to stop by and see Dr. A. It was a very good visit for the babies. Tobie said the NICU looked empty (which is a good thing).

Tomorrow we have our follow-up eye appointment. We are a little nervous about that one. One of Paige’s eyes sometimes looks a little lazy. We shall see what Dr. P has to say about that. Wednesday we have another peed appointment so we should get some weight updates.

We had our first follow-up with pulmonology today. Paige is doing great. The doctor said she looks perfect. We are going to keep her on her apenea monitor for at least more month and cut her diuretic in half. She has to be 60 days free from any apenea before we can stop using the monitor completely. They said we did a really good job using the monitor. They can tell how often we use it by downloading the data from it. Cole is also doing really well. He looked so good to the doctor, that the doctor tells Tobie that he would like to get him off O2 by next week. What? Tobie said no way (this doctor had never seen Cole before, so I’m not sure he was aware of Cole’s delicate history). Anyways, they did a quick O2 study and Cole was satting around 94%. (which is okay, not great). So we are going to cut his O2 in half to 1/4 liter for another month. So there is a good chance next month he will be off O2. Wow, when we left the NICU we were under the impression he would be on O2 for at least 6 months. He has come a long way.

While there at the clinic, the babies met with a nutritionist. Paige weighs 9 pounds 3 ounces and Cole weighs 8 pounds 14 ounces. So Cole has finally started to catch up to his sister. Previously he has always been at least 1 pound lighter. They confirmed that Paige is in the 50th percentile (but on the bright side, she is in the 75th percentile for heads) and Cole is in the 30th percentile based on their adjusted ages. Looking at a growth chart, they feel Paige isn’t gaining enough weight on a daily basis so we are gong to bump our formula from 26 calorie to 28 calorie formula. I think Paige knew this was coming because yesterday she polished off her first 4+ ounce botttle (without vomiting mind you)