I know I have majorly slacked on updating this blog... I guess I just assume that everyone reads my Facebook updates/notes and probably won't even read what I write here. Sometimes though, I need a little more space to talk about the things that have been going on.
Last month, Analeigh spent 19 out of 31 days in the hospital. She went in Jul 2 - Jul 12 with aspiration pneumonia (from vomiting formula), then from Jul 18 - Jul 24 with aspiration pneumonia again (from aspirating her oral secretions), and finally from Jul 29 - Jul 31 with what was later discovered to be strep pneumonia. It seems like every time we turn around, something new and horrible is presenting itself. She has gone from having a G-button to a GJ (due to a severe case of reflux), and from an uncuffed trach to a cuffed one (that isnt currently inflated). All of this in an effort to prevent the aspiration pneumonia from happening again BUT she's vomited formula since then.
I'm now in full battle mode trying to get her in to see a pediatric gastroenterologist to find out if there are any other alternatives. She shouldn't be able to vomit with the combination of her GJ button, cuffed trach and nissen fundoplication (which tightens the esophagus to prevent fluids from coming back up into the airway). The doctors are blaming most of these new problems on her anoxic brain injury which is why I am so angry that they keep refusing to do another MRI. The PICU doctor told me that they usually like to wait 6-7 months out from the initial injury before repeating the MRI. Here's my problem... it's been 6 1/2 months already! Aren't we close enough??
I just think that if they are going to say that these changes in her condition are neurological in origin, shouldn't we get another picture of her brain to find out if the damage appears to be worse than it was six months ago? It looked pretty bad then! They refused also to do another EEG, saying that it would only be useful in documenting seizure activity (which thankfully she hasn't had so far) and wouldn't tell us anything else about her brain activity. I know she hasn't made any of the progress so far that they were hoping for but it's not like I'm expecting the MRI to show me a miracle. I would have seen the miracle if it had happened by now... I just want to know, IS IT WORSE??
Sometimes I feel like these doctors are just toying with us. One second they want us to have "hope" and the next, anything but. Naturally, the brain injury worries me but I am even more concerned with the beating her lungs have taken this last month. The chronic lung disease already takes a lot out of her and then adding back to back cases of pneumonia, it's a wonder her respiratory status hasn't taken an even more drastic turn for the worse. She's a fighter, I know... I just want to figure out any possible way we can to keep her lungs protected from any further damage.
On another note, things with Jayden (the bun in the oven) have been coming along nicely. The last weight I got on him was at 33w3d and he was already 5lbs, 6oz (he was the size of a 35 weeker). Now that I am actually almost 35 weeks, it wouldn't shock me if he measured to be the size of a 36.5-37 weeker. Maybe, just maybe this means he can come out just a little early. I've gotten so big and miserable that I can't help but hope that the end is near... VERY near!!
His room is all put together along with his swing, pack n play and stroller. All of his clothes have been washed and put away in his dresser, just waiting for him to wear. I need a couple more things that aren't deal breakers, but for the most part... we're ready!
I am so looking forward to this being a different experience. Analeigh was so early and caused us so much worry and stress that it was hardly an enjoyable event. I didn't even get to hear her cry or hold her because she had to be intubated immedately and placed in the isolette. I want to hear Jayden's first cry and hold him while they're finishing up. I want to be able to attempt breast feeding and having that early mother-son bonding time. I think it would do my heart some good because I feel like I was cheated out of so much where Analeigh is concerned.
It still seems a little unreal at times that there will soon be a REAL newborn in the house. One that doesn't spend six months in the NICU and that gets to be dressed up in the cute "coming home" outfit and placed in a car to go home (instead of an ambulance). It's a little like experiencing motherhood for the first time because everything went so completely different with Analeigh. She was six days old before I could touch her, a month and half old before I could hold her and almost two months old before she was even allowed to wear clothes. She was over four months old before I ever saw her face without any tape on it. Goodness, I can't wait to see what it's really like!! :)
I'm trying to ignore the feelings of guilt when I find myself getting excited. I think about everything Analeigh couldn't do from birth and can't do now and all the things we didn't get to experience with her (belly laughs, family outings, getting her ears pierced, taking her to church, etc.) and then I daydream about the things we will get to do with Jayden. It just makes me feel bad sometimes because I worry that we'll get so caught up in the freedom of a normal child that we'll forget to take time for Analeigh. I guess it's normal for me to worry about that and I suppose I'll just have to take extra care in making sure she isn't left behind (so to speak).
Well, I think I've taken up enough of your time for today. Thanks to you all who listen and who show your continued love and support. We appreciate each and every one of you! :)
No comments:
Post a Comment