Finally Some Good News!

Over the last two years, my husband and I have almost come to expect bad news. Anyone who knows us or knows of us has seen the complete suckdom of our lives lately, and how it just doesn't seem to be ending. I always tell people that they should definitely not ride in a car with me...I seem to have a black cloud looming over my head! I certainly intend to give you some of the disturbing details about the last two years in a later post, but for now, I have to share something good. Yes, it is actually good!


In the last three days, we have seen four specialists. Such is the life of micro preemie parents. Anyway, I had been dreading these appointments for a few months now, for fear of what they would tell us. And by dreading, I mean feeling nauseous and like I want to hide in a corner.

On Tuesday we saw the developmental doctor. She does the follow-up appointments for preemies to assess how they are developing in the cognitive, gross, and fine motor areas. It is no secret to my friends and family that I have been afraid of Sweet B being diagnosed with cerebral palsy. This is of course my own fear and has never been brought up to me by any medical professional. Sweet B has been assessed many times in the areas I mentioned, and the cognitive, social, and fine motor areas are almost where they should be. However, her gross motor skills are severely behind. She is currently 10.5 months old. (8.5 months adjusted. So she is really supposed to be like an 8.5 month old since she was born 2 months early). Before her g-tube surgery she was pushing up on her arms during tummy time and pivoting and almost sitting. After her surgery, she started refusing to go up on her arms during tummy time and sitting seemed to hurt her. No matter how hard we beg her, she will only go up on her arms if she is laying on our chests or on a big ball.

I must interject that she is a very stubborn little girl (obviously taking after her daddy) and knows what she does and does not want.

How can this sweet angel of a child be stubborn you ask?

She just is! Trust me!

Anyway, the developmental doctor says that her tone is good. This is very important when determining if someone has cerebral palsy. She said that there is no reason that she shouldn't be sitting on her own or rolling. She agreed with me that it is quite possible that the surgery set her back, which is common, and that she could just be a very stubborn child. Also, the doctor says that not having physical therapy yet is also causing her to be behind, and she expects it will really help! She cannot diagnose cerebral palsy at this time, but if in four months, she shows no improvement, then they may look at that. They really wish that she was doing better in the gross motor area. If anything, her core is a little weak. But then she told me that she was doing well, considering where she came from. (This was after my husband's prompting. He always points out to the doctors just how little she started).

So I left that appointment not thrilled but not completely gutted, either.

The next appointment was with her gastroenterologist. He is thrilled with her weight gain (but didn't say anything about my weight gain, thank goodness :) The bad news was that if she gets aspiration pneumonia from her severe reflux or continues to throw up a lot, then she will need the fundolipication surgery. Could be worse.

Yesterday's appointment was with her new physical therapist who was like a nice drink of sweet tea on a hot afternoon. In other words, she was perfect! She was thrilled with Betta's tone and is very confident that we will have her rolling and sitting up very soon. She was not at all concerned about cerebral palsy. Her left foot is a little tight but feels that it can be easily corrected. She feels that the reason for her gross motor delay is due to her four hospital stays and focusing on eating. After she eats, we have to prop her up for at least an hour due to her severe reflux, which really gets in the way of her tummy time, which is crucial to development. Not to mention that feeding her the bottle often takes one hour! Now that we have the g-tube, we can focus on oral feeding still, but if she doesn't eat within a reasonable amount of time, then that is okay. We can focus on other areas of development rather than just begging her to eat.

Today we met with her teacher, who is as sweet can be. She is just perfect for Betta and for me! She assessed Sweet B in several areas and she really is working toward being where she should be. She is not exactly there, but again, she was born at one pound and eleven ounces, which is the size of a 25 weeker. She is looked at as being 8.5 months because she was born at 32 weeks, but normal 32 weekers are four pounds! No fair to be compared to them, right? She said that Sweet B is very smart and does very well socially. She is very confident about her as well. I love being given such hope!

Thank God for some good news, because after the last five months of pure hell, I needed something good.

This baby is such a miracle. She has defied all of those doctors who said she would die.

She was stubborn, clinging onto my uterus for dear life! But she is resilient, thank goodness. Maybe those seven months of fighting to live on the inside, prepared her for fighting to live on the outside?

My sweet little fighter.

My Miracle Child.