Monday, April 13, 2009

The Ups and Downs

As a parent of a preemie, especially one in a level 3 nursery, you prepare yourself for the worst, even if they are doing great. You are warned time and time again that pre-term infants are likely to slide back on the progress scale. That every big step forward can mean a big step back as well. And sadly that appeared to happen yesterday.

I called in to the hospital to see how he was doing yesterday morning, and was told that he had had a few apnea episodes through the evening, so they put him back on the biphasic CPAP (the one that provides him with a breath periodically). Ok, I can live with that. A little disappointing, but considering that he should still be spending another 8-10 weeks inside of me, I can deal with that. His lungs are, after all, still very immature and he is still learning to breath.

Well, when I get there last night, after spending the day caring for an over stimulated 5 year old (she got into the Easter candy while I was in the other room) and a sick husband, I find out that in addition to the set back with his breathing that occurred overnight, they are now thinking that they will have to re-intabate him (put the breathing tube back in). They also told me that he was very lethargic that morning, so they took some blood to test for infection - both viral and bacterial - as well as having performed a lumbar puncture. His tummy was all distended and hard for no reason, so they stopped feeding him and conducted x-rays on his chest and belly. They are thinking that he may be septic.

And cue tears.

No, this is not a pity post. It is just very disheartening when he has been doing so well. I know that we were prepared for all the bad things that can happen. We have been made aware of all the things that can go wrong and backward stepping we may have to do. But that doesn't make it hurt any less. That doesn't mean that seeing him looking more fragile than before, and knowing that he is now on 3 different antibiotics, possibly septic, had to go through an LP, has to go for the head scan now not only for the bleed but also because they need to make sure that there is no viral infection in the fluid in his brain, and is no longer being fed because they are not sure what has caused the distending of the belly isn't a horrible thing to stand there and see. Especially when he has been doing so very very good.

He is doing better today. He was good through the night and remained on the biphasic CPAP. His belly had softened as well. They are not sure if it was just him having a bad day yesterday or whether he was reacting to the antibiotics (meaning that there is an infection somewhere in that little body). Either way, they won't have the results from any of the blood work until tomorrow afternoon at the earliest. They started feeding him again this afternoon - half of what he had gotten up to (so 6 ml/2 hours).

Yesterday truly did feel like a slap in the face. Yes, I know that it is all about him. But it is very heartbreaking to know that there is nothing I can do for him anymore. At least a few weeks ago, sitting around and following doctor`s orders was good enough for him. Making sure I was eating right was good for him. Drinking lots of water was good for him. Now there is nothing I can do to protect him from these things that should not affect him...things that he should be inside of me still using my body to fight, create, etc. And for those who wonder why some of us feel guilt...this is why. Our bodies are supposed to protect these little angels. Our bodies are supposed to be the ones helping them to create antibodies, and learn to breath, and mature and develop to the point that they know and can without any sort of medical intervention. Somewhere along the line, my body decided it didn`t or couldn`t do so. Somewhere along the line, my baby boy realized that he was in just as much danger inside of me as out. And yes, there is the part of my brain that tells me I am an idiot for feeling this way. But guilt does not care about logic.



Keltie said...

You're not an idiot and I know exactly what you mean. I felt that guilt, I still feel that guilt and it's so hard not to feel it even when you know all the reasons you don't have to. I'm angry at my body all the time for not doing it right and failing my little girl like that. The knowledge that with the pre-E she wasn't even getting any nourishment from my body at the end kills me every time I think of it.

My girl had an episode where she had to go on antibiotics. I know the fear of it. It's the most frustrating thing to have a child and yet not have them be totally your own while they live in that incubator in the hospital.

I could go on and on. I just wish I could help. I'm glad to hear he's improved a bit, and so happy he's still on CPAP rather than having to be intubated. Still sending all the good vibes I can, for what it's worth!

Stephanie N said...

Darling-none of this is your fault!!!!!!!!!!! Our bodies do what they will, regardless of what we want them to. I'm sure there will be more ups and downs with him over the next month or two, but you have to just have faith it will be alright and stop blaming yourself.

KnittyBitch said...

Thank you both for your kind words. And believe me, we have discussed all this with the pre-term parent support group that Mount Sinai has (they are great people). I know that it is natural to feel this way. I also know that my body could not have done anything differently, nor could I. I could have been a model of perfection as far as pregnancy goes, and it would not have changed everything. But, as you mentioned Keltie, knowing what he went through, what he is going through, it still kills me.

I guess there was just a part of me that believed that, despite all the recorded information regarding them going up and down, that I thought he would be perfect and safe and just continue to get better.

I am feeling much better about things today. I see my other little one and how happy and healthy she is, and that makes a big difference.

He is also almost up to his birth weight (1110 grams as of last night).

And thank you for the well wishes, both of you. Keltie...I am glad that everything seems to be going so great with your little girl.

Keltie said...

I know what you mean. Yes, we're told to expect ups and downs, but when they do well it makes the backward steps that much harder to deal with. It gets so that you are wary of celebrating the next steps forward. I try to go ahead and be happy about the good things, but when she recently came off of her CPAP again I couldn't help but feel dread that she'd get exhausted and sick again as a result.

It's great that you have the support group! Talking to and reading about other parents of preemies is really comforting. And go Riley, getting back to that birth weight! They put on weight so fast with the breast milk.