Sunday, November 8, 2009

Ranting & Raving

You might want to skip the last half of this post because it's basically one long vent. So if you don't want to read that part, just stop when you get to the picture of Skyler.

So I realized today that I forgot to tell you guys what happened with his appointment with the NP and the gasping thing. She thinks it was just reflux from eating too much, which is what it sounded like to me too. She said if he keeps it up though to schedule an appt with his paediatrician. So far so good, no gasping the last few days whatsoever. I'm thinking we may be in the clear on that one, hopefully.

Now on to the bad news. He's not gaining or growing the way he should be. That's right folks my (almost) one year old weighs a grand total of 14 pounds. The funny thing is when people see how small he is and I tell them he was premature they always say things like "Oh so-and-so was premature and he's 6ft tall now." Yeah because that's what I'm worried about. My child has hypopituitarism and is prone to dwarfism because he can't produce his own human growth hormone, I'm not exactly shaking in my boots because being born two months early is going to make him a shrimp forever. Even if he had been born right on time he would still be this tiny, because his body just can't make itself grow. Once it's done using up all the insulin and whatnot that it uses to grow for the first few years well, then it's onto the manufactured HGH. Which it seems like we may have to do now.

I'm a little freaked out. It's just.. this is too early. He was supposed to be able to grow on his own until around 2 years old. That's what the doctors estimated anyway. It just seems like it's too soon. Chuck and I have to bring our growth charts from when we were babies to his endocrinologist to see if he's following our growth patterns. We pulled out Chuck's and he was only 18 pounds at one year old. So he was pretty tiny too. I'm not sure what mine says, I still have to go to my mom's place to find it. I don't think it's going to matter much anyway though. His endocrine appointment is Dec 1st. The next step after that is an 8 hour long blood test. They test and retest and retest and retest his blood for HGH because it's hard to detect. Our bodies use up the HGH almost as soon as it's made. So hopefully they find some in his system or else it's more drugs for my beautiful baby boy.



HGH has to be administered once a day 6 days a week by needle, right up until he stops growing (around the time we start the testosterone for puberty or just after). I'm not exactly looking forward to giving my baby a shot each day. I know he needs it, and I know I will do it. I just think this sucks. I'm not one to feel down like this, for the most part I think I'm pretty positive about everything to do with his special needs. It's just this is hard for me, I've always been relatively against drugs of any kind, I think our bodies should be able to for the most part take care of themselves. So the conundrum of having a baby whose body can't take care of itself.. I worry about these drugs he has to be on, what about side effects? I mean you can't take something for your entire life and not have side effects. The worst part is I know that that just has to be a part of his life. Because he needs them to live and grow and thrive. It's kind of a sucky feeling.

My supervisor was there when I called Chuck to see how the appointment went and I told her after I got off the phone about the whole HGH thing. She knows he's special needs of course and about his NICU thing. I think she was trying to be comforting when she said "There's always something, even with kids who don't have special needs." I'm pretty sure this was her way of trying to make me feel less alone or something. But honestly, while I think it's true there are always things to worry about even with a typical child, I don't think it's the same. Maybe you have to take your kid to the dentist to get a filling. Sure that sucks, but you don't have to give them a needle every day just to make sure they grow, or jump up and adjust the dose of pred everytime they sneeze. Or freak out because you forgot to give your kid his thyroxine two days in a row. A mom of a typical kid might feel horrible because she was tired, and turned her back for a second and the baby fell and bumped her head. But when I am exhausted from being away at work 12 hours a day and I forget to give him his meds he could have a seizure or his body could shut down. Obviously we hardly ever forget to give him his pred, but sometimes we're a bit late. The point is that this is what I worry about. I don't think it makes me a better mom than anyone else, but I also honestly don't think it's fair to say that someone knows what I am going through when their child is "normal" and mine is about to do an 8 hour blood test, and then likely start taking yet another drug each day.

Okay, phew. Sorry, I didn't intend to rant nearly that much. Apparently something was pent up inside. Sorry I flew off the handle there. I just had to get that out. I'm done now, I think I feel better.

4 comments:

Mrs. Spit said...

My mother was on these awful antibiotics that were IV, done at home through a central line, and had to be given 3 times a day. And I swear it seemed we were always late or early, and never on time.

I felt so much better when I finally asked the specialist, and he told me that an hour either way wasn't going to kill her.

Maybe you should ask the specialist. Because you obviously aren't going to make a habit of forgetting, but we are all human, and you have a lot to remember, and it might be useful information to know what happens and what you should do.

Karen said...

(((hugs)))

First, for the purely practical aspect:

1. Ask his doctors to compare his height/weight to the standards used in countries where breastfeeding is the norm. Moms of breastfed babies in the U.S. are consistantly told their babies aren't gaining the right amount of weight. But when you chart them on European charts, they tend to score in the median rather than on the low end. This is of course not the only factor with Skyler. His HGH levels are the much more important factor. But his doctors should be reminded that other things may be making a difference, too.

2. If he does have to have daily injections, make sure his doctor prescribes EMLA cream, which will make the shots painless. It's a cream that has a small amount of a Lidocaine/prilocaine mix in it to numb the skin temporarily.

Now to the emotional. I wish I had the right words to say what I want to say without making it worse. I don't know what you're going through. That's true. But I want you to remember that you are a good mother. All moms make mistakes. And all moms even make dangerous mistakes. But the important things are that you love Skyler, accept him for who he is, and are doing your best to keep him healthy and happy. You will do what you need to do. And he will grow and thrive because of you.

Stacie said...

Please don't feel bad for ranting/and or raving. This is your blog! We read because we care about you, Skyler and Chuck.

I think that you are an incredibly strong woman. I know I have said that before, and you continuously show your strength.

(((HUGS)))

Trish said...

You rant all you need to, doll. The situation sucks for all of you. If you didn't think it sucked, there'd be something wrong with you.
I get the same comments about preemies, too. Over and over. And I just smile and say "that's good to hear" because I know they mean well, but HI. NOT THE SAME THING.

My grandma will talk about my preemie uncle- born at 36w and otherwise healthy. Sure, 4w was pretty early 50 years ago, but you know, his brain was mature. It's not the same thing.

Hang in there, babe. You're doing everything you can and are a great mom.

--Trish