Update

8 Weeks, 3 Days

Ok, I know I have been a total slacker on updating this blog. I see in my traffic feed that many of you have been checking in regularly and I am very grateful for that!

I am going to try and do a quick post about the major events in the last weeks.

Adaline was in the hospital for one and a half weeks with RSV. They finally sent her home on oxygen and she was able to get off of that a week later. She is now in heart failure. The RSV probably put her over the edge, but it was not something we were not expecting anyways. She is on medication for it and doing well on it.

The cardiologist suggested we see a gastroenterologist since she was not pooping every day. I was not super concerned because she is mostly breastfeed and from what I can tell, breastfeed babies do not need to poop every day. While we were waiting to get in with the GI doctor, the pediatrician suggested that we mix corn syrup in her bottles. It worked like charm and she was very regular. When we saw the GI PA, she told us to stop the corn syrup and start Miralax. They also wanted to run a bunch of tests, but I declined them because she was going well. They saw she had lost an ounce since her appointment last week, so they made us see a nutritionist who told us to start mixing formula in her bottles to give her more calories. The frustrating thing however is that the last time they weighted her she had a very wet diaper and was fully clothed and this time she had on only a clean diaper..... When we got our visit summary, it showed her diagnoses as "failure to thrive" and "constipation". It made me very angry because the did not weigh her accurately and SHE IS NOT constipated. When she goes it is nice and soft, she just doesn't go often. Against my gut, we started giving her the Miralax and she had a diarrhea explosion. So, then I stopped the Miralax and she didnt go for a few days and when she did go, she screamed in pain. I ended up taking her in the tub to try and help the pain while she pooped. We started the Miralax again and she still doesn't go every day and when she does go, it is very loose. I am not sure what to do now.

The GI PA also wanted her thyroid checked.  They called a few days later and said it was high. They said we needed to repeat the test in 2 weeks and then we would need to see an endocrinologist. I was so frustrated because it seems like everything that could go wrong with her was going wrong.

The next week we saw the cardiologist again (whom I really like). I told her we had a scale at our house and I am keeping track of her weight at home and she is gaining well. I told her about the thyroid and she said it was common for kids with down syndrome to have low TSH levels. I told her that it was her T4 that was high and she said that that could not be right. She check the results and saw that her T4 was indeed high, but not by much at all and she did not think we should be concerned, so that was a relief. We got her blood drawn again yesterday, so we will see how that ends up. No calls on that so far.

Overall, Adaline is still gaining weight well. She is getting more active. She is also getting a bit more vocal about being hungry and especially when she wants attention.  We still love her to bits.

I have a bunch of blog posts that I have started in my head and I will try and get them down and post them soon.