Premature Celebration?

Imagine that! Well, it turns out we were a little premature (ha, get the play on words?) in our celebration of Emily's release from the BPD clinic...the sleep study results show that she is having both central apnea (stops breathing cause her brain forgets to tell her to keep it up) and obstructive apnea (from google: Cessation of airflow (at least 10 seconds) during sleep, due to a mechanical obstruction, such as a semi-collapsed trachea, tongue relaxed to the back of the throat, or a large amount of tissue in the uvula area). In other words, she is still having episodes of not breathing while she is sleeping and we should not have given the apnea monitor back.

Since she has officially been 'handed over' to her pediatrician, she is sending us to a pulmonologist to re-evaluate and determine if she needs a sleep apnea device of some sort...potentially putting her back on the CPAP (a machine that helps her breathe). This is only slightly frustrating to me as it bites that we are looking at a serious regression in her progress, but since we have been at this for so long, we know to roll with the punches...I guess it will just take her longer to get where we eventually want her to be...oh well. God had this planned a heck of a long time ago and He will carry it (and us) through to its completion.

She has also taken a wrong turn in her sucking. For about four days now, she has been back to choking, coughing, clamping down on the nipple and refusing to suck. It is so much fun that M has reached the point where he just doesn't want to feed her. I have learned to turn my brain off and 'not pay attention' enough to keep the frustration away but it is hard. It is hard because you know she has already mastered this skill...for weeks...and yet she acts like she has never tried it before. She is in speech therapy (I just like to say that cause I think it is HILARIOUS!!)...yes, an actual speech therapist...don't worry, they aren't teaching her to talk, sucking is in the same specialty and she is most likely to be speech delay because of her sucking issues anyway so she starts with them and just stays with them.

So if you could pray for her and us it would be greatly appreciated. We need wisdom...we need to know how much to go with the new recommendations that are sure to come down the line and how much to trust our own instincts. We need to know what is best for Emily and since we aren't drs, that means God needs to give us supernatural understanding and insight. He has done it hundreds of times along this journey, so I have no doubts He will give us more, but we need some prayers.

You know, they tell you the journey with these babies - "especially the sick ones" (I got SO sick of hearing that!!) - is always two steps forward and one step back and you say, "Yeah, yeah, I know." But when you get even this far out, it is just kind of sad and disappointing. You always want the best for your kid and every time she takes a step in the wrong direction you feel helpless. I just want to apologize to her and tell her it's okay and she will get there someday. And then I realize...she is not the one who is discouraged, it is me. She could care less and that makes me laugh. She doesn't know any different. She just smiles at you when you get in her face and grabs at anything she can see. When she is twenty, it won't matter to HER whether she learned to suck at one month or one year. What a precious gift she has just trying to learn to crawl more efficiently, oblivious to the rest of everything that is going on. I am SOOOOO grateful she doesn't have a clue! I love her! She makes me smile.