I was discussing my blog, and wanting to be available to help other people that have similar problems that I did with Caroline, with my counselor the other day.  I want to be supportive and available to people, but I’m not able to be emotionally supportive to a lot of people…it is so draining for me and I am still trying to work through my own stuff. So I decided to write up some things that made a GIANT difference in our lives.

The first thing that I bought that made a difference for me was a snug-n-go.  I got it on amazon to help support Caroline’s head and shoulders in her carseat.  It helped me keep her head up in the ‘sniffing’ position, to keep her airway more open. In the pictures, it is the black thing that is framing her face.

Caroline did well with most everything else.  We tried feeding her in a high chair, but that was difficult, so I fed her sitting in my glider with her head propped on the arm rest.

After the first time she got sick, she ALWAYS got wheezy 😦 She got a nebulizer with a cute dragon mask which we used a lot 🙂

Once she started getting a little bigger some things started becoming more problematic. Like bathing.  She outgrew her whale tub, but couldn’t sit up on her own. I found this thing that looks like a boppy for the tub…I used to prop her head on it to keep it out of the water. I don’t have a picture of it in use, so I used my feet for a size reference.

When she outgrew her infant seat, we started having real problems.  I got her a britax car seat and had it rearfacing, which was fine for the car…but where was I supposed to put her otherwise? We had always used her carseat with the snug-n-go as her seat…we brought it into stores, restaurants…I used it in my strollers so I could see her, etc.  So what i did was I bought a snug-n-go too (a bigger one) and I bought a city jogger city select stroller.  I chose that stroller because I could move the seat to face me and I could lay it flat, have it reclined, or have it completely upright.  I also chose it because it could be a double stroller (I was pregnant).  The double capability was helpful when travelling.  I was able to double the stroller, have Caroline in her seat, and have the other half to carry her carseat and other things she needed. The first picture was halloween (dressed like an owl), the second is at the doctor’s office (with my friend’s baby…they were there for moral support XO), the third is a close up of her in her stroller with her snug-n-go too.

That brings me to my Ergo.  I love my ergo.  I used it all the time…especially in airports etc.  I was able to wear her and use the bathroom or whatever…and not have to put her down…she definitely couldn’t sit or stand by herself. I wore her until I was about 34 wks, then we both got too uncomfortable.  I wasn’t able to easily find a picture of Caroline in the Ergo.

Another useful thing I had was a kid co pop up UV tent.  It was nice to have a very portable and small tent that I could put her in anywhere.  I used it at people’s homes…it was a clean place to put her away from other kids and pets. I used it outside at the barn (pictured below), and I also used it as a traveling bed.

One thing Caroline seemed to really enjoy was her swing.  She liked the motion and it seemed to be comforting to her. When she wasn’t in one of her parents arms, she was in her swing. As she got bigger, and I got more pregnant, it was difficult to get her into her infant swing that had the arm at the top and the mobile…I bumped her head a couple of times! I felt terrible!!! So I went out and bought her a glider swing that didn’t have the big arm in the way.  That was easier for me.  I tried to find a motorized swing for special needs, thinking I should get a bigger one that would last her, but I couldn’t find one that I thought would work for her…for less than $700!!! They were all too big.  Caroline was getting bigger but she was still very small, less than 30 pounds. Here is a pic of the glider swing I found at buy buy baby on clearance 🙂

We also had some other medical devices and medications that made my life so much easier.  These are things that should be discussed your personal physician.  I will tell you a small amount about them for completeness and so you know what has worked for Caroline.

Caroline’s swallowing started getting worse and she started aspirating when she was sick (with upper respiratory stuff). After she recovered from being sick, her swallowing improved…for a while.  We initially started using ‘thick it’ at the recommendation of a speech therapist only when she was sick.  We had to start using it all the time when she was about 15 months old.  It helped immensely.  We spoon fed her milk and pedialyte instead of her choking while trying to drink out of a bottle. After I delivered Caroline’s little brother, I took a supplement to increase my milk supply (mother’s milk plus) so that she would be able to have breastmilk again.  But she wasn’t able to drink it without choking and the thick it didn’t work well.  I used rice cereal to thicken the milk and bottle fed her with nuk bottles and fast flow nipples.

Caroline started having a problem even managing her secretions, especially when she was sick.  My hospice nurse recommended atropine drops orally.  LIFE CHANGER. That was huge! Feeding Caroline had become quite a struggle, and this really helped.

Caroline’s sleep cycle got out of whack.  I called her my second shift baby.  She would sleep until 10 or 11 am, and sometimes wouldn’t go to bed until 10 or 11 pm.  At the recommendation of the hospice team, we added melatonin to her night time medication bottle.  That really helped with her sleep patterns.

I hope this information is helpful!