Friday, March 30, 2012

Progress

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.

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.

Wednesday, March 28, 2012

6 months

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

Surgeon Appt

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

Yet another offensive post...

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

What a weekend

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.

Monday, March 12, 2012

1 in 100,000

My Facebook status read: 1 in 100,000. Wow, we're special. Some days, I'd rather just be normal.

We got the results back on Ladybug's genetic tests. She has craniostenosis/craniosynostosis, but not the Crouzon's we are told runs in the family. She has Pfeiffer syndrome. Now, the Mechanic never had a genetic test run, and the other family member's tests weren't as specific, so maybe they had Pfeiffer. Maybe the human reading the DNA misread it and she actually has Crouzon's. Or maybe she was just that lucky kid who mutated the mutated gene.

At this point, I can't figure out the difference in Crouzon's and Pfeiffer. What I do know and understand, is that her head is getting too hard, too quickly. If not corrected, this will lead to more developmental delays, neurological problems, pain, and potentially, death.

Yeah, we're going to treat this. I believe in God as a Great Healer. I also think He does a whole lot of His healing in operating rooms.

I'm not handling this as well as I thought I would. Maybe I didn't take into account pregnancy hormones. I didn't think I'd cry. The Mechanic said I would. Well... he's right. As usual. (See honey, I admit it)

When I typed "Pfeiffer" in the Google search bar and those pictures popped up, my immediate action was to cover my mouth and say "oh my gosh!" (That is actually what I said, no better, no worse.) I teared up a little bit but blinked them back and started my research. I scanned the John Hopkins article and then started trying to find a neurologist to treat this. I only made two phone calls before I gave up. One I had to leave a message with. The other said they would see patient's for cranio, but only if they were over 2 years old. I told her that did me absolutely no good. Definitely not waiting till my child is 2 to get this treated just so insurance will pay better.

I then realized I had absolutely no idea exactly which specialist needed to see her. Then I got to talk to her doctor. She is definitely in favor of us going to a craniofacial center, but the ones that came up when they had searched for this particular type of cranio were all thousands of miles away. I told them about the craniofacial center in Chattanooga that had done our nephew's surgery, so they are going to send us there. We'll keep Vanderbilt in mind as a second opinion if we think we need one.

I downloaded and was reading over the craniofacial parent's handbook that was on Erlanger's website. Unfortunately, it has lots of pictures. Including intrasurgical pictures. Of pieces of children's skulls sitting on sterile fields to be worked on. That's when I lost it. Normally, I find surgery fascinating. But all I could think of was, oh my gosh that's going to be my baby girl's skull sitting there!

Now, we have no idea exactly how this will be treated. They may wait. They may do medications. They may do a helmet. Or, they may do surgery. We won't know till we see the craniofacial specialist and probably do a CT.

So, I'm simply praying for God to provide. There's a long list of things we need. Everything from wise skilled doctors and anesthesiologists, to lower gas prices.

Thursday, March 8, 2012

Reading to a 5 month old

I try to read 3-4 books to Ladybug every night before bed. I've gone through all our kids books 2-4 times, bought a bunch of books at consignment sales, and am taking advantage of the local library's kids' section. I started reading to her before she was ever born, reading my big Beatrix Potter treasury. One thing has happened that I hadn't anticipated.

My child reads with me.

Aloud.

Quite loudly.

She's taken to jabbering in the last month, mostly vowel sounds by themselves, although she did say "mama" Sunday. (I asked the Mechanic and he confirmed that yes, she did say "mama." Although I won't pretend she has any idea what she said.) She can get pretty vocal at times, which is why she now stays in the church nursery on Sunday mornings. But she is never more vocal than when I am reading to her.

At first I thought she was just jabbering for the sake of jabbering. But then I realized that she got quiet when I put the book down. And would start again when I started the next one. Yet another reason to keep her in the nursery... she thinks when you open a book, you start reading aloud. Even if you can't talk yet.

I couldn't help but laugh at her today... she'll occasionally turn her head and look at me while I'm reading instead of looking at the pictures. And of course, she talks to me while she does this. I finally looked at her and said "shhhhh." She stopped... and giggled. Pure, complete, giggle. I obviously got nowhere with teaching her that "shh" means "be quiet." What could I do but laugh? It was completely, utterly adorable!

So I'll continue reading, over top of my 5 month old. I think it'll be a long time before we can go to story hour at the library...

Wednesday, March 7, 2012

Why moms with kids old enough to be on Facebook, shouldn't be on Facebook.

This will be a work in progress, as I see things that remind me of just why moms over 40 should not be on Facebook.

  • Confirming your daughter's pregnancy before she does.
Really? I mean, come on! I've seen this happen more than once now. Daughter posts a vague status update. People start guessing, eyebrows get raised. Good grief, I did it when I wasn't even pregnant yet! When you've been married for a while, mention kids, life changes, surprises, or sleepless nights, and everyone assumes you're pregnant. If you're not pregnant, you get on there and clarify that you are NOT pregnant. If you are, or are trying, or are just plain mean you don't say anything. You post about the weather or your dog the next day, and leave everyone hanging.

But, to all the parents out there, you don't (let me repeat, YOU DO NOT) clarify for them if the answer is yes! No no no no no no... in NO circumstance is this appropriate. It may be your grandchild, but it's her child. Let her announce it however, whenever she sees fit.

Some people have a major problem with the first pictures being posted by someone other than the parents. Now, I have no issue with this. My sister-in-law was the first to post pics of Ladybug, and that was fine by me. Honestly, it took the pressure off me to get on there. I think she was a week old before I even did a status update. I'm sure it's different if you have a smart phone and can update from your hospital bed. But, if I had a smart phone, I'm not going to take my eyes off my child to post! I had some family get ticked over this... get over it. My world does not revolve around Facebook. Believe it or not.

So, there you go. Number one reason of many why your mom should not be on Facebook. =)

Tuesday, March 6, 2012

Political Rant

I'm going to rant for a moment.


Republican party: you stink.


Grassrotes efforts in east TN: you stink.


I live in a small town, literally on a main street. I live next to a stinkin' post office. And I had NO CLUE that the election was today.


Granted, I'm a tad isolated. I don't have a TV. I don't subscribe to a newspaper. I don't work. But I do go to church. No one mentioned it. NO ONE.


I then decided to criticize myself; after all, if I really wanted to vote, it's my responsibility to find out when the election is and where I'm supposed to vote. So I pulled up the Kingsport Times website to find out poll times. Let me list the headlines for you.


Main Headline

  • Gov. Haslam defends his actions for businesses

Top Stories

  • Defendent whose drugs were stolen from HCSO evidence locker pleads guilty
  • Report: Colts, Manning to go separate ways
  • Police: Woman on 'bath salts' breaks into neighbor's home, sets fire
  • Hackers busted after one becomes FBI informant

Local Headlines:

  • Police car clips man in wheelchair on Center Street
  • Gingrich pitches plan to lower gas prices to $2.50 during Kingsport visit
  • Search for UVa-Wise chancellor set to begin
  • NWS: Seven tornadoes hit NET, SW Va.
  • Sullivan BOE approves $400,000 in renovations for North

Sports

  • Report: Colts, Manning to go separate ways
  • Britain says handshakes OK for its Olympians
  • Nine more allege abuse at hands of late Red Sox clubhouse chief
  • Lenny Dykstra gets 3 years in Calif. prison
  • Judge: NY Mets owe up to $83M to Madoff trustee

Business

  • Streak in gas price hikes ends at 27 days
  • Chrysler to sell natural gas-powered truck
  • Dow falls more than 200, interrupting 2012 rally
  • BMW in cooperation talks with General-Motors
  • Financier Stanford convicted in $7 billion fraud

Sunday Stories

  • Signature Properties partnership gives back
  • Folks You Should Know: Audey Ratliff
  • Kingsport Public Library offers wide range of programs, services

Entertainment

  • Brooks leads 2012 Country Music Hall of Fame class
  • Sci-fi drama 'Terra Nova' axed after first season
  • National Geographic Museum to open Titanic exhibit
  • 'Supercalifragilisticexpialidocious' composer dies
  • Skies still blue for Crystal Gayle

Noteworthy

  • One killed, several injured in meth lab fire at nursing home
  • GOP hopefuls clash with Obama on Iranian response
  • Special Forces soldier dies trying to save his kids in house fire
  • Court rejects suit by Tennessee dad in international custody case
  • Report: Minority students face harsher punishments

Community News

  • Nancy Ross Hugo lecture 'Seeing Trees: Discover the Extraordinary Lives of Everyday Trees'
  • Annie Moses Band coming to FBC March 18
  • Children to benefit from 1,500 free books
  • Tickets on Sale for "A Tisket, A Tasket, A Literary Basket"
  • Scrabble Social aids literacy efforts


Seriously? There is not a SINGLE headline even remotely hinting that the primary is today. NOT ONE. The only thing that even comes close is talking about Gingrich lowering gas prices when he comes to visit. Apparently he was in town yesterday, presumably because the primary is today. I read that article. It concentrates on his comments on gas prices. It doesn't list poll times. And truly, it doesn't even say that TN's election is today. It says he visited the day before Super Tuesday; I suppose you can make a logical conclusion that he wouldn't waste time the day before a major election in a state whose election is later. But they didn't come out and say that. And they sure didn't give specifics as to "Sullivan County polls will be open from 9-5" or whatever.


Apparently, we care more about what Peyton Manning and the Colts are up to than the fact we're deciding who will run against Obama for president.


And just to be clear, I went on to try to find the poll times. The majority of the links I found for my county (not Sullivan) had to do with 2010 election. The link was about 3/4ths the way down the Google search page, and then it took about 4 links from there to find a general "most polls will be open from 8-8." This stuff should be frontline, headline stuff. I should not have to search to find it. TN has not held its primary on Super Tuesday very often; it's not like the national election which is automatically the 1st Tuesday in November. ( I correct myself: apparently TN did use to be part of the Super Tuesday bunch. In 2003 they decided to move it back to February in an effort to get more politicians to pay attention to us, essentially. Please keep in mind I was not even old enough to vote until Dec 2002. So, out of three presidential primaries I've been eligible to vote in, two have them have not been on Super Tuesday. So, it is understandable that I do not immediately associate Super Tuesday with TN's primary.)


Well, whomever me and Ethan may have voted for: you lost two votes today. Surely we're not the only TV-less family in the area.

Monday, March 5, 2012

distracting myself...

I'm trying to distract myself while sitting still. It has been a long, miserable, lousy day. Dizziness + morning sickness + diabetes = really lousy day. I've put in an order for a watermelon slushie from Sonic, hopefully to arrive with the Mechanic on his way home from work. They don't come in diet, but at this point I need the calories and sugar. I considered passing out today, but figured that wouldn't bode well for unborn baby or sleeping baby, so I declined the offer.

In news headlines on the home front, Ladybug is putting weight on her forearms. *happy dance* (oh wait, that requires moving and that means worsened dizziness... happy dance in brain only) She's actually getting a couple inches of her chest off the floor. I went consignment shopping last weekend and found one of those, oh, I don't even know what they're called. They're ancient, but you wind them up and a picture goes across the screen, which has little lines that make it look like the objects in the picture are moving. (If anyone knows what that is called, please leave it in the comments; I've googled everything I can think of and can't find any online, but surely someone somewhere still makes these?!) This one has the Pooh characters and plays "I'm just a little black rain cloud," and it works wonders for keeping her from crying while on her tummy. I'd love to get a couple more of these, just for variety's sake. I've also turned my laptop on for the first time in years and put Baby Einstein on right in front of her. That also bought us a few minutes. I never wanted to use technology like this, but by golly I'm desperate to come up with something that encourages her to move!

Baby #2 was doing well at our last check up. I, as usual, am having some bleeding so they did an ultrasound just to check and little Herman was wiggling his/her arms and legs around. So cute! They did find a low lying placenta, which combined with an infection explains the bleeding, but 9/10 women have this resolve before 20 weeks so they just have me on some mild restrictions. This pregnancy has made me feel worse than last time, but I can't pinpoint why. I just feel bad. Maybe it's the back to back thing. Oh well, as long as this baby is born healthy I can live with some discomfort. I'll just whine a lot about it in the meantime. =)

Thursday, March 1, 2012

Little update

For my memory's sake and those who might be following along here... (My memory is back to being horrible. I fed the dogs twice in one evening. They've been trying to get me to do that for years. I fed them, and then about 3 hours later Fritz went and sat in front of his bowl. And I though, oh no, I forgot to feed the dogs! So I fed them. And about 15 minutes later I was wondering why they weren't scampering to go outside... then I remembered they'd already been out, 'cause I'd already fed them.) =)

Anyways, we're still waiting on the genetic test to come back on Ladybug. Should get it back in another week and a half or so. She's had several days when she's acted like her head was hurting, either grabbing at it or rubbing it back and forth and whaling high pitched cries. We hold her, rub her head, and give her Tylenol and she calms down. I just think it's a bit absurd to be giving a now 5 month old Tylenol 1-2x/week. But, when she acts like that I figure it's just cruel to let her be in pain, if I even have a hint that that's what the problem is.

We did finally make a little progress in the pushing up status. Yesterday, on her 5th month birthday, she finally made a little effort to push herself up on her forearms. I've been putting her on her belly on the changing table while I put her clothes on her, trying to use any time I can for belly time that might distract her from screaming. I knelt down in front of the changing table so she'd look at me, and then once I had her attention I slowly stood up, and she actually raised her head to follow me and then put a little weight on her arms and raised her chest up, just a bit. I was so excited! Small victory, but I had really wanted her to at least show some effort to push up by 5 months. I'm beginning to get an idea what parents of premies and developmentally delayed children are like; you really do get ecstatic over the littlest things, cause while they seem little to someone else, when you've been trying for them for months it's huge!