It's been a while.. Rambles about Analeigh & Baby Jayden's Approaching Arrival

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! :)

Just some thoughts today...

I watched a video a little while ago about a baby girl who was born without a heartbeat and not breathing. After 20 minutes, they managed to revive her but worried about the chance of brain damage. She had an abnormal EEG which they followed up with an MRI that was normal. I read a lot of the comments people left with stories of miracles that happened to them in similar situations but instead of feeling inspired or hopeful, it left me with feelings of jealousy and anger. Why hasn't my daughter received a miracle like this? Has she not fought hard enough? Long enough? Does she not deserve it anymore than the next child?

I know this is the wrong way to look at it and my heart should rejoice for those who have been healed and restored. It's just that it breaks my heart to look at my sweet girl sometimes and to see that she's obviously suffering and there's nothing I can do. One smile could make so much difference and we can't even get that. I used to think that there was a reason that we got her back, that she didn't die. I guess I thought that God was testing us to see how well we would take care of her and love her and that if we passed that test, she would get her miracle. Now I find myself wondering that if that were true, maybe we failed? People say you just have to "have faith".... maybe ours isn't strong enough?


I keep trying to remind myself that God works in mysterious ways and he doesn't always let us in on the plan. We're just supposed to keep trusting and believing and let him do his miracles in his own time. I know this is true. I'm just saying that sometimes it's hard not to question what He's doing (or seemingly, not doing). It's even harder not to wonder whether or not it will ever happen for her.

Lately, we've been faced with a lot. Analeigh seems to be getting somewhat contracted in her hips and her feet are bent to one side. You can't move them. With feet like that, walking will not be an easy task (if it's ever even a possibility). She seems to have an endless supply of secretions that may be the reason she's been breathing the way she has (almost as if she's hyperventilating). I thought she'd be through the storming by now, but it doesn't appear that she is or will be anytime soon.

ECI has been hounding me about speech and vision therapy and while I know they have good intentions, I have been wrestling with whether or not I believe it will do her any good. She was diagnosed with cortical blindness (which means her vision has been affected by the brain damage), so her brain does not recognize what she is looking at. If she can't understand what she sees, can she understand what she hears? How would she be able to learn sign language? If we can't get her off the vent to teach her how to speak, how will she ever communicate with us?

Some days I force myself not to think about these things because it's just too much. I try to make myself believe that the reason I'm not spending as much time with her lately is simply because I'm pregnant and just too tired. I think maybe I'm lying to myself and the truth is that I just feel too discouraged when I see her laying there with her heart rate up, respiratory rate up and cheeks flushed... and no smiles. There is always some demand on my time (which usually helps me hold it together) but recently, I wish it would all go away. I finally admit that I am sick and tired of scheduling doctors' appointments, returning phone calls, skipping over the cute outfit I know she would look good in because it will make her too hot, medicines needing to be refilled, etc. The list goes on and on. I've heard it said by so many that God only gives us what we can handle. I just wonder now, how many times do we have to cry "Uncle!" before we get a break??

I guess I'm having one of those crybaby days where I just feel sorry for myself. I had read blogs by other moms with babies/children with other serious problems back before Analeigh's brain injury and told myself I didn't deserve to feel sorry for myself because we were better off than they were. Now, I don't know that I feel that way anymore. There's always something wrong, something needing to be done and I'M TIRED. Physically, mentally, emotionally TIRED. I am fighting to be excited about the new baby coming, but really... it just stresses me out with the fear of whether or not I'm going to have to do this all over again. I don't think I could. I really don't. If I have to see the inside of a NICU again, I think I'll just.... well, fall apart.

Well folks, there you have it. The ones who appear to be "strong" aren't always what they seem. I don't always have it together and I don't have all the answers. I get tired of people asking me how she is because there just isn't much good to say. She just is. I apologize to any people I have snapped at while being questioned... it just seems like I've had to repeat myself over and over again between doctors, therapists, friends, family, nurses, etc. I've told the story a thousand times and it doesn't get any better each time. She still doesn't laugh, smile, talk or play. She doesn't get to go to the park, to birthday parties or family get-togethers. She doesn't get to have her ears pierced or wear pretty dresses to church. She can't drink a bottle or eat chicken nuggets. These things might seem trivial to some, but when your child can't do what so many take for granted... you realize just how important they are.