Behind All This...

So I'm almost over the whole "make Sweet B's blog all about rainbows and sunshine" thing. My most favorite part of this blog is that it forces encourages me to look at the good in our situation, but I do need to remember that honesty will help myself, my family and friends, and other preemie parents who come across this blog to realize that even though Sweet B looks chubby and happy (and she is), we are dealing with issues that are physically and emotionally exhausting for all three of us.

The particular challenges we are facing are difficult in an odd way...they are not seen by most people unless I were to show you her g-tube or tell you exactly what milestones she should be meeting by now or show you how she doesn't eat. Most strangers on the street see her as a beautiful, somewhat chubby girl who wears adorable glasses which turn everyone to mush. Don't get me wrong...she is that beautiful girl and so much more, but to the untrained eye, her difficulties are not easily seen, which can feel lonely for us when we don't get the encouragement that we so desperately crave. However, I can't imagine being on the flip side of this, where people stare at the obvious differences and act inappropriately.

The last month has been quite the challenge. My husband's father came for a visit and gave Sweet B her first cold, which set off her not eating and actually slowed down her development due to being unable to sleep at night and gagging, more than usual, on her mucous (sorry, TMI!). That lasted for two weeks, and then she began cutting two teeth which we thought would be the death of us! She stopped sitting and continued her refusal of food, and began a new habit of holding her food in her mouth, refusing to swallow, forgetting about it, and then choking on it as it went down her throat, causing her to vomit up her whole feed!

Side note: Does anyone know how to get a baby with oral aversion to swallow? We've tried giving her sips of water in between bites and stroking her neck. Hopefully our feeding therapy will start soon and we can get some help! HELP US PLEASE FEEDING THERAPIST!!!

Last week I almost wrote a post about how forlorn I was and how I didn't know where to muster up the energy to continue to try to feed her orally three times a day. (She vomits every feed, even from the tube, so in order to keep her from vomiting, I could have her on the feeding pump all day to pump continuously at a slow rate, but I know that is not what is best for her. She needs mealtimes and she needs to feel hunger. Anyway, I didn't write the post and now I am glad that I didn't, because I think it would be revealing a bit too much, and I don't want that.

This morning my hubby let me sleep in because I have ran out of my thyroid medication and am feeling horrible. I got up at ten (yes ten!) and the first thing I laid my eyes on was Sweet B sitting up on her own and playing with her toys! She was reaching and banging toys together in mid line (most parents don't have the pleasure of knowing how important that milestone is) and giggling. She was not pushing back against my hubby's leg, nor was she going into the "you are my chaise lounge" pose.

(I am back to using my iPhone for pictures. Hubby dropped my camera in the sand.)

She wasn't sticking her shirt in her mouth screaming. I looked at her teeth, and sure enough, one of those teeth straight from the pit of hell had broken through her gums. My hubby and I were giddy. She ate two bites of her oatmeal and only threw up a little bit of her breakfast (yes, those are good things!) Then our service coordinator and her teacher came to our home to write out her goals for the year, and she mimicked Miss Allison saying "no no no" and she gobbled up all of the attention that she could get, and put everyone under her spell, as usual. Today was one of those days that encourage us to keep giving 100 percent and to not give up...What we are doing is working and she is growing in beautiful ways.

Yes, she did throw up every meal, but I pray that she got enough to grow. If you pray, could you pray that she gains weight? If she doesn't, she will need the fundolipication surgery, and I know that would set her so far back in her development, and my anxiety will grow to humongous proportions. Not to mention that the surgery may cause even more problems.


On a different note, it seems that I enjoy posting pictures of Sweet B crying. Why? Well, because she is so freaking cute with that smooshed up face!

We went to the beach for the millionth time this summer. Isn't she SO cute?

Sweet B's daddy accidentally allowed her to do a face plant in the sand. This was during one of her "I refuse to sit and will use you as my chaise lounge" moments. He felt so bad that he wouldn't even let me take a picture until he got a lot of the sand off of her face.

Her teething was really bad, and she was sooo not happy, that things proceeded to get worse. 

Let's just say that we had to leave after only a short time, and someone was exhausted when we got home.

Today I sat in my bed with her and just held her and smelled her and rubbed her soft skin. I do this every day, but when we've had a really good day, I get the extra joy of knowing that things will get better, and this little miracle is going to continue inspiring all of us.

Do you know how much she is loved? My dad is so obviously completely smitten by her.

My mom texts me every day demanding pictures of Sweet B. 

My hubby's mom has just discovered the joys of buying clothes for little girls, and I am reaping the benefits!

She steals everyone's heart. I remember when I first had her and she was in the NICU, I thought about her twenty-four hours a day. Even when I was doing something totally unrelated to her, she was on my mind and the thought of her made me giddy. 

Do you know that she still makes me giddy? Even with all of the appointments and worries and vomit fests, she still makes my heart just as giddy as it was when she was in the NICU.