Well goods news first right?
Logan is now officially outgrown 0-3 months clothes, yay!!!
I got to go thru his clothes and remove all the 0-3 months clothes and pull out a whole new batch of 3-6 months clothes.
What I also was looking at when I was going thru all his clothes is how tiny he was as a newborn. He weighed 6.3 at birth but after two weeks in the NICU he was 5.2 when we took him home. This is what he was wearing…
That little outfit is in comparision to the pants that fit him now and those pants are tiny (3-6 months) He wore premie clothes for the first few months of his life. So even though he is still off the charts small (literally, he is well below 0%) he has grown despite all of his setbacks.
The good news is that feeding is going great. He is eating really well. Probably not as much as a typical 10 month old but he has made HUGE improvements for him. He is eating three albiet small, meals a day, he has to snacks (finger foods), and 3-4 bottles. I have been adding 1/2 – 1 TBLS. of flax seed oil to everything he eats. After trial and error I have found flax seed oil to be the most tasteless but also healthy oil. I have tried olive oil, hemp oil, canola oil, and grapeseed oil but the flax seed oil seems to be the least noticable to him. One TBLS. of that adds a whopping 120 calories to everything he eats (its also a heart healthy oil!).
(This concoction here is Greek Yogurt, flax-seed oil, and Agave nectar-which is just a healthier sugar)
Now on to the bad news…starting all of this food has given rise to a whole new set of problems. Constipation, rectal bleeding, rectal prolapse, and extreme discomfort 😦
At this point I am not sure if this is a heterotaxy thing (heterotaxy kids are prone to constipation and a slew of other GI issues) or just a major switch in diet that is going to take some getting used to. The rectal prolapse (which was mild) was not something I ever want to see again (just google it you’ll see what I mean.) and I think it has now made him scared to go.
So I am now having to increase his fluid intake. I hate doing this because everytime I give him some juice it is a missed opportunity to give him calories! I am very nervous about this because Dr. Patel has brought up the G-tube (a surgically implanted feeding tube) multiple times now and I believe a decision will be made based on his next exam which is on Tues.
This is a picture of a G-Tube. I don’t want to have to feed Logan like this. I would much prefer to feed him naturally. So we will see.
The other bad news is that the huge amount of increase in calories has done nothing to improve his respirtatory rate. He is breathing 77-82 breaths per min (normal would be about 1/2 of that or less) he sounds like he is out of breath all the time. He still can’t hold his head up, but I don’t understand how he ever will when he gets out of breath from just laying on his back playing with a toy.
I have more to tell but I am going to finish posting tomorrow because Logan is crying….