Crying Baby

First of all, I didn't have the greatest day. Let's just get that out in the open.

But, tonight, our bedtime routine was satisfactory and normal. It is now 11:25. I am sitting in the dark living room. Emma is on the floor--crying. I simply don't know what to do for her.

We were in bed with the lights off at 10:45. We heard Zachary in the other room coughing. He is suffering from allergies. They make him cough. We give him Claritan every day. It only slightly improves his night coughing. Coughing too much makes Zachary throw up.

Zachary threw up.

Because he threw up, Mark and I went into "clean up" mode together.

However, Zachary and Emma share a room. So, our busy-ness woke Emma. That, and Zachary was crying.

Emma is still crying. She won't let me hold her. And she cries more when I put her down. She has been this way her whole life. She is NOT a cuddly baby. It makes for a lot of confusion and frustration on my part. I do not know how to comfort her when she refuses to let me comfort her.

*sigh*

Thank Heavens Zachary is back to sleep.

Emma's "Belly Button"

The Surgery
Emma got a gastrostomy tube, a "button," placed on December 21, 2011, at Primary Children's. Poor little girl was starving by the time they finally took her back. I have to admit that it's been so long since I posted on here that I have forgotten many of the details--but I'll do my best to remember them.

While we were in the surgery waiting room, we saw our surgeon take a much older child back to surgery. I thought that they took the babies first since babies must eat more often than older children. So, not exactly sure why that kid went first.

Anyway, Emma's surgeon went exactly as planned. Her surgery took about an hour. Her button was placed a lot higher in her abdomen than I anticipated, but it hasn't been a problem. It's right below and to the left of her xiphoid process.

I posted on Facebook, "I feel sad." I did. I still feel sad about it some days. Sad? Well, yes, sad because it had to come to this. I'm sad that Emma had to have a painful surgery. I'm sad that I haven't been able to help her as much as I would have liked. Just sad. It's hard.

G-button Problems
There haven't really been many problems with Emma's button. We put some steroid on it most of the time because she has what is called granulation. It totally freaked me out the first time I noticed it. The nurses at PCMC taught us to watch out for it. But, we keep it in check most of the time.

There isn't that much of a problem with leaking. We put a gauze on it every day. But, that's just so the ooze doesn't get on her shirt.

The other problem has been the occasional "detachment" of the night pump bag from her tube. The first time it happened, she woke up about 4:00 in the morning crying. She rarely wakes up in the middle of the night--not since she first got her ng-tube. But, she woke up starving, soaking wet, and cold. Poor girl. I didn't attach her tubes correctly.


Since the Surgery
The first week after the surgery was a kind of honeymoon. Emma ate! She ate and she ate and she kept it down! I was like, "Why on earth didn't we do this sooner!?!" We're pretty sure she was happier to eat because the ng-tube was no longer gagging her all the time. It wasn't triggering her gag reflex. So, eating became easier and with less vomiting, more enjoyable.

The second week following surgery, Emma did okay. She started throwing up a little bit. But, nothing like she previously did. And, I was able to increase her volume a little bit.

After that second week, Emma started fighting again. Not like the fights we previously had (I don't fight her like that since I know she aspirates), but she would refuse and I started getting sad again.

I've come to terms with it. She just doesn't like to eat, sometimes she aspirates, and sometimes she gets worn out (yes, even though she isn't an infant she gets worn out). So, I just tube it. That's the point of the g-button, after all.

But, that, in itself, can be depressing some days. I don't want to have to tube feed my baby forever.

We have an early intervention group coming to our home to help us with feeding. We offer Emma different items to eat. We give her the spoon sometimes. We let her play in her food. We encourage her to put things in her mouth--food and non-food items.

Since December, I've been able to increase Emma's volume quite significantly (for Emma, that it). In a 24-hour period, we are now giving her about 3.5 more ounces that in December. Yay! That makes me happy. I would say most of this increase has come in the last month, since she started crawling. Yay!

For a while she started vomiting again. But, that has subsided (except for sometimes at night, yuck). And even when she was vomiting again, it was never as bad as it used to be. Mostly, she would up-chuck when she stuck something too far in her mouth.

So, yes, I am grateful my little Emma has a g-button. One day we'll get rid of it.