Of course I say he is doing well and they throw another hurdle at us. He apparently needs hormone replacement, but they don't know that he does for sure. As the doctors have told us for the third time our baby is a puzzle. They don't know why he is developing so slowly, so I guess the best idea is to pump him full of random drugs and see if one of them works. As the doctor said his levels of cortisone are a little low, so they're going to see if giving him more will make him develop faster. They don't know for sure though if that will help. As I asked her "What if he is just one of those babies that doesn't develop at the exact same rate as all the others?" and she said "yes maybe you are right and that is just him" OK. So give him the drugs anyway cause it might be fun to see what happens. Good plan. My baby is just a science experiment for these people because as they said they can't understand what's wrong with him, but he isn't as fast as everyone else so there must be something wrong. She even said he is improving, but slowly.
If these drugs don't help him then I want them to take him off of them. Oh and another fun fact, they were about to start this drug treatment without even informing us. We had to go through the chart and find it on our own and then ask them what the hell this whole thing was about. We ask the nurses everyday if there are new orders or if anything has changed, and they either don't know or don't pay attention or something. Even his own pediatrician didn't know! So we called the NICU and talked to the doctor that was in that day, and she said "Oh I thought you knew." Well no, I didn't know. "Someone was supposed to have talked to you." And get this, they were going to tell us after they had started him on the drugs. Apparently that is the standard procedure for keeping the parents involved.
She didn't expect us to want to know because the other parents usually don't. Really? People are content with just leaving their kid in the hospital and not knowing what's going on with them at all? "Here's my child please stick him in a plastic box and pump him full of whatever drugs you like and don't tell me anything about it, I just don't have time to care." Are there really people like that? Apparently that is the "standard of communication" around there. Her words. I guess the hospital runs a "don't ask don't tell" policy. Or a "ask us and we'll tell you we don't know, so then go read the chart and find out on your own and we'll tell you not to read his chart" policy.
Aside from that issue, things were alright yesterday. He's been taking his feeds by bottle mostly, desatting here and there mostly with burps and hiccups and feed related issues. The baby C is taking care of is super easy (so far anyway). He comes over, at around 6am, we take off the snow suit pop him in the playpen in the bedroom and he's lights out within a minute or two. He wakes up and eats and plays happily. He's very comfortable with C which is quite nice.
I had a ton of fun with N yesterday, there is nothing in the world like a two year old to cheer you up when you're upset. We read stories, ate macaroni and played "I spy". She came up with some funny ones like a red tree frog, and a blue puppy dog. Oh and when I changed her bum she told me her bum was hurting, and as always with her owies she tells me to kiss it better.. So we spent 10 minutes arguing back and forth and giggling like crazy "kiss my bum!" and then me saying in a silly voice "No way!! Yucky!!" crazy baby laughter followed by her telling me to kiss her bum again. Oh such fun. We also played in her little dora the explorer tent. I'm amazed I fit in there but I am only 5'2. She's doing the whole 2 year old "mine" thing so I'd pick up a toy and say "Can I play with this?" She'd grab it and hide it from me and say "no. my toy" Oh and then she'd call me a bad girl. Haha. And there's nothing like a baby saying "I love you" to make your day.
And since 1 minute in my world seems to mean an entire day, here is the promised picture:
(Don't mind his horrible looking parents. We don't seem to find the time to shave or get a haircut lately.)
5 comments:
Thinking of you.
(and, in spite of the very difficult circumstances, it's a lovely picture of the three of you)
That is a great picture. I think it's more than understandable why there may not be time to shave and whatnot.
That's a ridiculous communication policy, or lack thereof rather. I am so sorry. I can't even imagine.
How long do the docs intend on giving Sky meds before they determine if that's the answer to his slow development?
N sounds adorable.
They have no intention of telling us how long they will do the meds for. Their answer is 'we don't know." Which is their answer for everything. "We don't know if it will help him. We don't know if it will hurt him, we don't know if it will cause his body to stop producing cortisone on it's own, we don't know how long he'll take it, we don't know if he will go home soon."
And N is adorable, she's like my ray of sunshine on a stormy cloudy day.
I love that picture! And I can't believe that they weren't going to communicate with you about what they're giving Sky! Strike that, yes, I can. Ugh.
Hang in there Azaera! THat is a beautiful picture of the three of you! And maybe there is a doctor in charge that you can speak to about the lack of communication? You have every right to be upset about that.
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