Two sides to every coin

I just love this beautiful face!

Here is a picture of her "G-tube". For lack of official terminology, I will call this the port. We open it to insert her tube with milk when she needs extra mLs for a feed. The gauze under is to protect her skin (it's very red and "ouchy", but thankfully not infected). We shouldn't need the gauze forever, but we'll see. It's healing a bit "wide" so we are trying to keep it stable so it will heal closer to the tube.

The NG/G tube coin:

We were given the "green light" to go ahead and start using her G-tube at her post-op appointment yesterday. Of course, she had pulled her NG tube out overnight (Wed. morning) and had part of her feed all over her clothes. The other side of that coin is that she slept through it - hooray.

Positives - no tube in the nose and down the throat, no tape on the face. We can now kiss whichever cheek we want. Hope I don't take that for granted in the future! It was quite strange to go to a Doctor's appointment today and not be asked about Kara. A bit sad because I do enjoy sharing what a miracle she is.

Negatives - she can still pull the tube out (she did this morning, first time I fed her). Not the "port" that is in her tummy, but the connecting tube. At least I'm assuming she won't pull out the port! And we have to get her connector primed with milk (so we don't pump her full of air) before she goes down for the night - even if we aren't going to feed her again for an hour or so.

The Katie potty-trained coin:

Positives - Katie loves her "daisy underwear". Is doing a great job all day and night. I only do diaper laundry every other day (instead of every day), and Katie's getting old enough that her diapers were not very pleasant. Enough said.

Negatives - Mommy has to drop whatever she's doing (pumping, feeding Kara, changing a diaper, or eating at a restaurant while feeding Kara) to take Katie potty. She can't get on the potty without help.

The Kara getting older and stronger coin:
(A friend mentioned to me back in May that maybe we should get together in August when things calmed down a bit. Since we came home in March, I have known that for Kara's first year, things will only get harder so we got together in May! I sigh and I laugh when I reflect on the fact that I was correct.)

Kara is now eating much more by bottle:
Positives - Hooray! She's getting stronger, and more "normal" - I don't HAVE to travel with her pump for her to get enough calories to make it a few hours.
Negatives - She used to eat for about 4 to 5 minutes, I'd put her on her pump and I'd pump for her next feed. Now I'm spending the whole time feeding her and then "fitting in" 30 min pumping some other time.

Kara's breathing rate (and therefore her caloric need) has lowered and is close to normal:
Positives - Recovery, she has energy to grow and develop as well as breathe, and can eat better. n She does not need "fortification" (powdered formula) added to her milk. She is eating much better with just my milk, her system is handling it better and she seems hungrier (i.e. more motivated to eat).
Negatives - She sleeps less (about what the average baby does), so I spend more time moving her from place to place or carrying or entertaining her. Our feeding pump does not work on just breast milk, so we have to hand syringe her feed into her if she does not eat everything.
Positive - We are choosing to "fortify" overnight so we can still use the pump. Looking at dropping her nighttime feedings here soon

We are so thankful for each of our coins and will find the positives of the "Kara mobility" and "Kara eating solids" coins when we get there. God is giving us the grace to be thankful for the positives and laugh about the negatives (most of the time!)

Thanks for sharing our journey!