I'm anxious to see the results. I hate to hope for something to show up... but I can't help it. She keeps doing strange things with her eyes that worry me. I'm probably going to get her an appointment with an eye doctor no matter what the results. Someone on a support board was telling me about the infantsee program and supposedly they offer free exams for babies under one year. Looks interesting.
Friday, March 30, 2012
Ladybug's CT is scheduled, and we see the surgeon again later that same day. I'm assuming this means we get the results the same day. Unexpected, but certainly welcome. I don't know if this is the norm for this office or if they're just doing it because we are traveling so far.
Wednesday, March 28, 2012
It's hard to believe I've had a little girl for half a year. It doesn't seem like it's been but a few weeks.
I haven't kept up with my monthly essentials lists. Every month is so similar that it seemed somewhat pointless. We use the same things now that we did then, for the most part.
Sometimes she doesn't even seem like the same baby we brought home from the hospital. She's bright eyed and alert, and watches everything that goes on around her. She loves going outside, and she likes seeing different people for the most part. She's very verbal, making all sorts of noises to announce her presence. She holds her head up really well and can sit up on soft surfaces. She hates being on her belly and won't push up or roll over. But she'll stand with balance help. She reaches and grabs for everything; she was holding onto the handle of my hot tea mug this morning and I had to pry her fingers off it so I could take a drink. Anything she can grab hold of and put in her mouth, she does. Right now everything she touches is covered with drool and snot. Lovely RSV.
We're on formula all the time and she loves it unless she's sick. Because she seemed extra hungry I started her on cereal at 4 1/2 months and she's up to rice, oatmeal, prunes, and peas now. She's gotten the whole "open mouth insert spoon" thing down, and we keep most of what we put in our mouth inside. She's big enough for the swing in the tree outside as well as the baby swings in the park. She sleeps through the night most of the time, although she does not like bedtime. She enjoys trying to grab pages while I read to her although sometimes she knows bedtime is coming and wales because of it.
So that's our life for now...
Tuesday, March 27, 2012
We had Ladybug's appointment with the craniofacial surgeon yesterday in Chattanooga. It wasn't exactly what we were honestly hoping for, but I don't think we were surprised.
The doctor said her head shape, while very lumpy and bumpy, did not fit any specific syndrome or suture closure. The soft spot is still open, which we knew given that I feel it just about every day. Her hands, feet, and eyes do not show the common characteristics of either Pfeiffer or Crouzon's. Basically, he can't tell anything from the exam, other than she has a lumpy head. He has ordered a CT scan to see if there is a suture closed that he couldn't feel. They have a new machine that does the scan much faster than normal, so they are going to try to do it without anesthesia. This hopefully means no needles so that is a definite plus. Unfortunately, even if we did need anesthesia he doesn't want us to do it locally because he doesn't get the exact picture he needs, so I'll be heading back down to Chattanooga at some point.
We did get signed up with TEIS which I think will be helpful. They can even do hearing and vision exams which is awesome.
My current thoughts are, we're in this for the long haul. Surgery, while traumatic and expensive, is simple. I'd like a reason for why her head has all these lumps and bumps, because I don't think it's normal. I'm also seeing her eyes cross at times, which isn't normal. And I don't think her hearing is completely normal either, all of which can be explained by the cranio which the genetic tests clearly shows she has. I'd also like a simple reason for why she's 6 months old and not doing what a 3-4 month old can do.
But, I'm just the mom. Of course I want answers and simple fixes. And I may be seeing problems where there aren't any... But hey, what else are mom's for?
Friday, March 23, 2012
I'm going to step on toes.
No, more than that. I'm going to stomp on them.
I'm a member of a birth board. I do it for amusement, mainly; when I really truly need advice my internet is down and I prefer to look in my nursing textbooks. I do enjoy being able to answer some people's questions, assure them something's normal, encourage them to see a doctor about a problem, or just encourage them. A popular topic is vaccinations.
Now, I've just hands-down refused to post on those threads. I have too strong of an opinion to get into it. I don't feel like getting tarred and feathered either.
But by golly, this is my blog and I'm going to post my opinion.
If you do not vaccinate, you are risking the life of your child, and the life of other children who are not fortunate enough to have good immune systems.
I was just in the ER with Ladybug, who has RSV. The kid's had MRSA. She's had campylobacter. The kid's got a screwed up skull. She was a full term healthy infant who has already had 3 different antibiotics. She just doesn't have the greatest of luck. If there was a vaccination for RSV, you'd better believe I'd have gotten it. I'm thinking someone out there has got to be working on that, right?
So here's my advice to those of you who don't vaccinate. Go walk through an old graveyard. "We don't get the flu vaccine." Go to the Great Smoky Mountains National Park. Ask a park ranger where some cemeteries are. Hike your non-vaccinated butts to them. And look at those tombstones. Notice the dates. Notice that there are a lot of them in 1918. Know why? Flu. Guess what else you notice. Lots of babies. Lots of little angles craved into tombstones. Lots of kids under 5.
Guess what folks? Measles kills. Rubella kills. Mumps kills. Guess what else? There's a shot for that. Smallpox kills. Read John Adams or 1776. There were epidemics. Lots of people died. Know why we don't have that problem now? Vaccines. Remember polio? Those of us who are young, nope. Know why? Vaccines. Hospitalizations from diarrhea caused by Rotavirus? Preventable with a simple two dose oral vaccine. Hepatitis B, extremely contagious, extremely bad for the liver. Preventable with a vaccine. Hepatitis A, same thing. Let's see, what else... Oh, diphtheria? Another nasty diarrhea bug, potentially fatal for children. There's a vaccine for that. Whooping cough? Lots of problems with that in California... where people decided to stop vaccinating for it. Tetanus... ever seen someone dying of that? It's bad. There's a prevention for that... it's called a vaccine. H. influenza type B... nasty little critter. Preventable.
Blunt. Offensive. That's me while pregnant and tired (wait... pregnancy = tired. Never mind) You like seeing your kid sick? You like watching them suffer? You like having your ears pierced by their screams of distress? Fine. Don't vaccinate. But don't take them to Walmart. Don't send them to school. Don't bring them to the neighborhood playground. Don't risk them catching something that's completely preventable and exposing someone else who can't fight off germs. You have the right to not vaccinate. Great. Exercise that right and stay in your commune away from my kid.
Wow... I can be horrible. Glad not many people read this!
Thursday, March 22, 2012
It's been a whirlwind... I only hope the next few weeks leave the cows out of the trees.
Does that make any sense? It makes sense in my head... but that doesn't mean much anymore.
Where do I even start? Well, we went without internet for a week; you have no idea how dependent you are on something till you don't have it anymore. It was a mix-up between two companies, frustrating, but absolutely nothing I could do about it. Not that I had time to try anyway...
Friday the Mechanic was off. And I was quite upset over the internet situation. So he went to Walmart to get stuff for spaghetti and to fix our DVD player so we at least had something to watch. (We have no TV) I was in the nursery, where I'd been all day, organizing baby clothes, when he called my cell and said I needed to come get him, he was about to pass out and there was lots of blood. I immediately thought car wreck, but he was in the Walmart parking lot. So I grabbed Ladybug, who was asleep, shoved the dogs outside, and ran out the door. I actually thought to grab the first aid kit too.
When I got to Walmart, as I suspected, he'd passed out, seized, and someone'd called 911. There was an ambulance, a fire truck, and two cop cars. He was on his feet by this point, already bandaged up by the off-duty EMT that happened to be in the parking lot at the time. Somehow he sliced his finger quite deeply on a pocket knife that came open without his knowledge, so that could have been a lot worse. I ran the beef and frozen texas toast back inside and took him to urgent care for three stitches.
Saturday, I was bleeding. Now with Ladybug I bled for 4 straight months, but I've got a low lying placenta with this baby and have not bled daily so it was a bit more concerning. I rested most of the day and then decided to head to the ER that evening on the Mechanic's suggestion. The nurses were so helpful; it was slow so they took Ladybug to the nurses's desk to feed her and kept her while I had an ultrasound. Turns out that low-lying placenta is causing some problems. It has partially detached and is bleeding underneath. Baby was fine, so they told me complete bed rest, flat on my back with my feet up, until I saw my OB on Monday.
Do you have any idea how limited you are when you can't even roll over or sit up? Oh. My. Gosh. I have never been so miserable. I'll go through the 9th month of pregnancy 10 times before I'll spend 36 hours on my back again. Plus there was the fact I could do almost nothing for Ladybug; she likes to sit up now too, and I couldn't put her on my belly so I really couldn't hold her. The Mechanic had to do everything, and while he did his best, he's just not mommy.
So Monday we went to the OB and had another ultrasound. Baby was still good, placenta had the small area of detachment and bleeding. The OB said I'd probably be bleeding off and on till the placenta moved away from the cervix, so we're hoping that happens soon. Until the placenta moves, I'm on restricted activity. Limited lifting, squatting, exercise, and orders to take it easy. At least I can do most of what I need to for Ladybug. I was so relieved to be off complete bed rest, especially with Ladybug's appointment with the surgeon coming up. I did not want to miss that.
And that brings us to Ladybug. This is what comes from being toted to the ER by Mommy and held by all sorts of nurses. She had a runny nose on Sunday, but I figured she was getting allergies. By Monday, she had a horrible sounding cough. I did too, and I was assuming mine was from allergies. Nasty drainage. By Tuesday, she had a rash. And that's when I called her doctor, who told me to bring her in. So I loaded her up and off we went to yet another doctor (4th in 5 days). Now, you would think as a nurse I would have thought to listen to her lungs. I'd listened to my lungs the day before. But I neglected to listen to hers. Apparently they were not pretty sounding... when I listened later that night, there were all sorts of rhonchi and wheezes. So we have her on antibiotics and nebulizer treatments. We think she may have walking pneumonia, although in her case I guess you'd call it sitting pneumonia. Yes, this baby girl still can't push herself up or roll over, but she can sit up unsupported for close to a minute. Strange.
In the midst of all this, we have scheduled appointments with our surgeon, Dr. Sargent in Chattanooga, and with the TEIS (Tennessee Early Intervention Services) for evaluation. I'm anxious to hear what the surgeon has to say... that will give us a lot better idea of what we are facing in the next few months.
Tummy time... looking outside buys us a few minutes. But other times we just decide to nap instead of working on our pushing up.
My hand is several inches away; she's balancing by herself! Cannot believe this... I was so afraid she was going to get further and further behind, but it looks like she's just decided to skip pushing up and rolling altogether.
Neb treatments... she's not a big fan, especially since they make her congestion worse temporarily as it loosens and she coughs it up.