Sunday, December 27, 2009
I'll start with Ty-Ty... Who is now almost 5 months, and almost 18lbs. (Daxton was just over that at a year if I remember correctly. It's so completely different raising a puny baby and a chubbo-tubbo... ) Ty is able to sit up for a while now when you plop him down, and he loves standing in the exer-saucer and smacking the toys. He enjoys sitting in the Bumbo chair, but his butt has gotten so fat he almost doesn't fit in it anymore :) We're working on adding in different fruits and veggies to his diet, and thus far he really, really likes fruits, carrots, and sweet potatoes, and dislikes sweet peas with an intense passion rivaled only by his hatred of poopy diapers and the subsequent changing of them. He's babbling and squealing and smiling... And crying and screaming and tantrumming. He's loud and precious and precocious and completely on target with everything he's doing. He's routinely referred to by my pediatrician as "boring."
Boring is good :)
Oh, except that on Christmas Eve another weird blood thing happened. His face and neck broke out in what is called a petechial hemorrhage, which is basically a bunch of tiny bunch of broken capillaries right under the skin. It's probably nothing, and he didn't have any other symptoms of anything major. It can be caused by a number of things, but is something we need to keep an eye on with the previous weird blood things Ty has shown.
So he's now being described by the pediatrician's office as boring, with just a hint of weird.
But that's how most people describe our family anyway. At least we know he's ours :)
On to The Dax-Man... He's made so many gains lately! He went from having one word ("cookie") to lots of words, although "Da-Da" is his favorite. We've also heard "Mama," "up-up," "down-down," "Ty-Ty," "Papa," and "Nana." He's now clapping his hands, and doing it well :) I was worried when we finally got him to clap his own hands (he's been clapping ours for months) because he could never really line his hands up correctly, but now he's doing much better with it... And he loves, loves, loves to do it! He's also waving bye-bye all the time....
He's making some progress with eating... He is willing to try ANYTHING now, even if he can't keep it down or if he gags on it. He still loses about half of the food that he puts in his mouth if it has chunks, but he tries... He's actually teaching himself to eat with his mouth closed so the food doesn't fall out. How many of you with older kids can brag that they chew with their mouths closed? :)
Physically, he's getting braver with taking steps but we only get 1-2 steps at a time and then he carpet-dives. He's been able to stand up in the middle of a room for a couple of months, and he's standing up further and further away from items and then trying to step to it, which means lots of scrapes and bruises from falling into or onto what he's trying to get to. He has a riding toy he can climb onto and off of, and he's figured out that pulling all the way up and standing on the seat like a stunt rider is super-fun. And he's not even two yet. His teenage years will be the death of me...
And he suddenly has a mouth full of teeth, molars and all. Not sure if I'll recognize him if he doesn't have a mouth full of drool!
The boys had a great Christmas, and much to our surprise they were actually good enough for Santa to come. Our living room, which was previously described as "Six-Flags Over the Living Room," now looks more like a "Six-Flags Over the Living Room after a tornado went through." Oh well, they're only young once.
And that's it in a nutshell.
As for the insurance drama, we're still trying to raise awareness and have a meeting scheduled tomorrow night (that would be Monday, December 28th) at 6:30 at 801 East Old Hickory Blvd in Madison, TN. The meeting is to help parents fill out their peach pages and answer specific, individualized questions about what options our disabled children qualify for. Any and all are welcome to attend, and you can bring your children if you're unable to find a sitter.
And I had a nice, long conversation with Rep. Maggart before Christmas. She's on the Tenncare committee and is supposed to be looking into some things for us this week. We'll see what happens. It was just nice to have some acknowledgement from an official that this is a problem and our children are falling through the cracks. At least that's something.
Oh, and we made the paper again today: Here's the link to the story. It highlights Daxton's issues more so than the global issue, but it's getting the story out there. Maybe it will fall on the right ears and/or eyes.
And now I must go hook up a handsome young devil to his machinery and prepare for the Monday following a holiday (which is never, ever fun.)
Hope you all had a wonderful, safe Christmas!
Sunday, December 20, 2009
Why should this matter to you? It could be you. None of us planned on having sick children. We had plans of our children being doctors and football stars just like you. We love our children no matter what, though, and will do whatever we have to in order to give them the best outcomes they can possibly have. We will lose our homes; we will file medical bankruptcy. Our children may not be perfect by society’s standards, but they are worth loving, and they are worth saving.
I think what bothers me the most about this whole situation is the complete disregard shown to us as middle class families, and to our disabled children. I have written emails to Diane Black, Debra Maggart, Michael McDonald, and Bart Gordon, and have spoken to someone in each of their offices either via phone or in person. Bart Gordon did have his liaison from TennCare contact us to go over options; however, I have not received any reply or acknowledgement from any other office. I have also contacted Governor Bredeson’s office and have received no reply from him, either.
Really? Are our children that unimportant? Are sick children’s medical needs so far down the list they don’t even warrant a response?
We’re not looking for handouts, nor are we looking for sympathy. We’re looking for equality. With the new TennCare rules, children of lower-income families or of non-legal residents will continue to qualify for the care that our children will be losing. The reasoning must be that if we have enough money to support TennCare and pay our taxes, then our children must not be that sick.
So, as our children fight to live and to thrive, we will fight to ensure they can continue to do so. Our children have not made it this far for us to give up on them now.
And we will not give up.
Our disabled children have taught us what is important in life, and they have taught us what is worth fighting for. Unfortunately, we are also being taught how broken our system is, and how apathetic our government officials can be to the plights of the working families who elect them.
So we are asking for you, as our friends and neighbors, to help. Please help us spread the word to our officials that our children matter, and that middle class families matter. Please help us prevent our children from falling through the cracks. You can help us make a difference, and you can literally help save a life. Our children are worth it!
Friday, December 18, 2009
I've gotten a meeting organized with the TennCare expert from the Tennessee Campaign for Health Care Justice. He's going to be available to talk with any/all parents or advocates who have questions about TennCare, the peach pages, or disability options.
Everyone interested, please keep your schedule open on Monday, December 28th. The meeting is scheduled for 6:30, and we'll figure out where once we know how many people will be attending. If you haven't done so already, DO NOT send in your peach sheets until after you talk to this guy. He may have valuable information to help keep your child covered! This guy really knows his stuff!
Please let me know if you can make it, or if you are interested in more information!
Monday, December 14, 2009
Tuesday, December 8, 2009
And what have I found out? A whole lot of not so great news.
I've found out it doesn't matter how sick Daxton is. He's disabled; there's no denying that... And they feel terrible about it. Poor kid. But we make too much money. Sucks for him.
Options? There are no good options.
Still freaking out.
So I'm working on an email to my senator and my representative. I'll put a template on here after I send off my initial mails, and if any of you have a second to spare and can copy and paste it and email it on it would be fantastic... We're working on getting our local Fox News interested and hopefully get some more community involvement. It's not just us this is affecting... I've been back and forth with several of my sick-baby-mama-friends today and most of us are at a complete loss... And there are thousands across the state in our same shoes, all because we're the working middle class.
This really stinks.
Yes, I shouldn't worry. Yes, it's in God's hands. Yes, I get all that.
But when your son's quality medical care, equipment, therapies, and medications are all supplied by an insurance you've been promised he'll have until he's 21, and then that company says, "Ha ha just kidding," it freaks you out a little.
And that's what has happened.
When Daxton was born he automatically qualified for SSI and TennCare. We knew the SSI would go away once he was out of the hospital, and that's fine. TennCare, however, has been there all along to pick up whatever our private insurance does not pay for. Come to find out, our private insurance doesn't pay for a lot.
Things TennCare has picked up include home health nursing, medicines such as Synagis which are key in keeping him out of the hospital, speech and swallow therapy and physical therapy, equipment, such as his oxygen and feeding tube supplies, and all of our co-pays along the way. It's helped out tremendously in ways that you can't even put a price tag on... If TennCare had not paid for nursing, Daxton would have gone to daycare. How many times would he have been hospitalized if he had been around other children? How sick would he have gotten?
And the bottom line is, we don't want Daxton to be on the system forever. It's getting him healthy, and getting him caught up now that are important, so that one day he won't need any extra help. And he won't, God help him, if he's able to get the services now that he needs.
But, thanks to a federal court ruling in 2008, all the children who were placed on TennCare due to their diagnosed disability and long-term care in the hospital, but whose parents make too much money and pay too much in taxes and social security to actually receive social security, will be kicked cold-turkey out of the Tenncare system. And apparently very soon.
What does this mean for us? It means come January 4, 2010, my son will no longer be eligible. We will likely lose our nursing care, therapies, and will possibly be paying for all Daxton's equipment out of pocket unless we're able to get our primary insurance to pick up. Meanwhile, a baby down the street may still get all of those things because mom or dad choose not to work. That kid can get WIC, SSI, and TennCare. Mine cannot because we both have college degrees and choose to work and pay our mortgage and our bills.
How's that for a broken system?
So, needless to say, I'm taking the day off work tomorrow, err, today, and I plan on burning up every phone I can find until someone gives me some answers. For now, hopefully now that I've vented I'll be able to get a little sleep and be rested for the attack. In the meantime, please pray for us, and for the thousands of families just like us, who are going to be fighting this battle to keep our children healthy and taken care of... Because in the end, it's not about the mom or the dad, it's about the kids and their futures, and EVERY CHILD deserves the chance to thrive.
Thursday, December 3, 2009
One year ago today, we left behind our safety net of nurses, doctors, and respiratory therapists along with the rest of our NICU family, and drove our baby to his little green nursery with monkey murals and a staff of only two, not including the nurse we wouldn't meet until the next day.
One year ago today, our precious little 11-12lb little boy (depending on how much fluid he was retaining at the time) spent his first night in his crib, with Shep and I camped out on the floor on air mattresses with no remote possibility of sleep.
One year ago today, Dax's cry was so quiet you could barely hear it, so we responded to alarms, and instead of late-night feeds we had late-night g-tube malfunctions.
One year ago today, Daxton's O2 sats would drop immediately if he was off his oxygen. When he was upset he would stop breathing, sometimes passing out and requiring sternum rubs to wake up and breathe.
One year ago today Daxton still turned blue. Regularly. And with great fervor.
One year ago today we weren't really sure what the next year would bring...
We could have never known it would be the best year of our lives!
Thank you all for the many, many prayers that have been said on Daxton's behalf, and for all the love and support you have surrounded us in. For all these things, and a thousand other things, we will be forever grateful!
And now is a great time for some photos...
We couldn't find scissors, so Mommy bit off my hospital band :) She was ready to go!
I was so excited to go home! Can't you tell by the look of pure joy and anticipation?
I had more luggage than Mariah Carey, and about as big of an entourage!
Lola gave me lots of kisses when I got home! Either she really liked me or I still had peaches on my cheeks :)
After a long day I napped in Daddy's recliner. It was good to be home!
And as the grand finale, here's a video from today... Our little boy is growing up!
(And, yes, that's what my living room floor normally looks like. And, yes, that basketball goal/baby cereal can I have duct-taped to the wall is a little ghetto, but it works better than any kids' basketball goal I've found at the store. And yes, Daxton broke our blinds and we will not be replacing them until the kids are in college. And no, I wouldn't change a thing. Not one bit!)
Monday, November 30, 2009
So, in the name of prematurity awareness, I want to share part of my story with you guys in hopes that others will learn from my mistakes, and maybe some kid somewhere will be born healthier and happier for me doing so. Other preemie parents out there, I urge you to do the same on your blogs and maybe an expectant mother out there will learn that one thing that will keep her from walking in our shoes...
I think most mothers who have been down this road look back and see things that they think they should have seen back then. I guess that's true with most situations... But even though I can't go back and change the path of my pregnancy, if you know anyone, ANYONE who is having twins, or is experiencing the same issues I was, please help them be informed (Notice I said "inform" and not "scare." There is a difference.) Multiples are at a higher risk and should be treated as such.
So here's my story.
We found out we were pregnant in November of 2007. As soon as we found out I picked the new OB in a very reputable office. The doctor was young and I felt she would be fresh on all the new techniques and procedures, and she would also have the more experienced doctor in her office to rely on if she was unsure about something. I made an appointment with her and began the wait.
I bought loads of pregnancy books and started obsessing over foods. I based my meals and snacks around getting all my nutrients and eliminated artificial sweeteners and unheated deli meats. No caffeine for me, lots and lots of water and orange juice, and just the right amount of exercise. Oh, and when they say 12 oz of low-mercury fish, believe me when I say I had 12oz, no more, no less, of fish a week. And I started eating 4 apples a week because the latest research had shown it decreased the risk of asthma by some crazy percentage. I was a woman obsessed.
Then I started having some bleeding...
It was mostly dark brown. I had two or three pregnancy books I read daily, and all of them said bleeding is never a good thing, but it is a common thing. Dark brown is better than bright red. I called The Doctor after three days to see if I should come in, and The Nurse told me that if it worried me I could go to the ER.
Okay, wait, you tell me if I should be worried. This is during business hours. I can come in. Should I worry, or is this normal?
The Nurse then said if it continued for 3 more hours to go to the ER. Okay, I've been bleeding for three days. What makes three more hours so different?
But I just said okay. I didn't argue.
I had no answers when I got off the phone, and I was frustrated, so I called my PCP. The actual PCP called me back within 10 minutes, and actually gave me information I could use. Yes, brown blood is common, yes it might be a miscarriage but there is nothing that can be done to stop it at this stage of the pregnancy so just take it easy and go into the ER if the bleeding gets substantially worse.
Wow, a real answer. A real plan. I could live with that.
So a week or so later it was time for my first OB appointment. They set up an appointment for the next month then sent me for an ultrasound since I was still having some bleeding.
And that's when we found out our little peanut was actually two little peanuts. :) We were 6 weeks pregnant with twins! We had wanted twins so badly, and it was just surreal.
The next morning I called my OB and spoke with The Nurse again. I told her it was twins and that I knew how common it was for a baby to just disappear during the first trimester, and we wanted to do everything possible to keep them both in there and healthy. Can we move up our next appointment? See the doctor more frequently? Are there any additional supplements I need to be taking? Any extra precautions?
"Those all sound like good questions to ask The Doctor at your next appointment," she replied.
And I didn't argue. I was frustrated but I just let it go.
A week later I started bleeding again. Red this time, and more than before. I freaked out and they sent me in for another ultrasound. Everyone was still there and accounted for. Phew.
I had a follow-up appointment with the OB the next day and she told me then that I needed to take more folic acid since it was twins. I asked about seeing her more frequently and she said they typically start seeing the mother twice monthly starting at 24 weeks due to the increased chance of prematurity.
And I say ok.
Over the next few months the same types of issues continue to arise. I call the office to ask a question and, if I ever actually even got a reply, it was never a useful one.
Meds that were promised to be called in to the pharmacy immediately weren't called in for days.I was frustrated, but I figured I was just overreacting. You know, crazy first time-mother-itis... I assumed all doctors' offices worked that way...
We had our 20-week ultrasound and everything looked really good. The only thing they saw was Aubrie having a slight heart murmur, but they told me that was common and they usually grow out of it. I researched vitamins and minerals that specifically help develop the baby's heart and started eating more foods that contained them just to be sure.
I became sick one week later with cramping and an upset stomach, but I didn't get worried until that Friday when I woke up with a fever. I called the office all morning, starting before office hours, and left messages asking what I needed to do. We were headed into the weekend and I didn't want to end up missing my window of opportunity to see The Doctor...
I called and called. Left message after message.
Finally I just got in my car and started driving there. They will see me today whether they want to or not. Thankfully, The Nurse called me back as I was headed that way. She told me The Doctor wanted me to go to the hospital OB floor for observation and tests. I did, and they had me pee in a cup and hooked me up to the contraction monitor.
I was having contractions. Not bad ones, but they were there. The hospital OB nurse said that was pretty common. A manual check of my cervix showed it was still closed. The hospital OB nurse told me my pee came back normal, but The Doctor was ordering an antibiotic for a UTI and sending me home, with an appointment not that coming Monday, but the Monday after. (The Doctor was going on vacation, see. That's why she didn't come by the hospital to check me out, and why she wouldn't see me the following week. She'd see me after she got back from vacation. A completely reasonable explanation. If she was going on vacation, then I must be fine.) The hospital OB nurse told me I didn't have to go home, that I could stay for longer. She actually tried to persuade me to stay. I told her I would do what The Doctor said... Obviously she's The Doctor and she knows what she's talking about.
The next week (you know, the week The Doctor was on vacation,) I had a baby.
Could my premature delivery have been prevented, or at least have been postponed a few weeks? I don't know. There's absolutely no way of knowing. Do I look at the situation emotionally and with perfect hindsight? You bet. Do I feel the doctor was negligent? I don't know. I don't know what's "normal," or what's common practice. I don't think she went above and beyond my any means, but was probably super-comfortable in her role of doing the minimum that is medically required. I've heard several times now that everybody is basically treated the same until they have a premature delivery or a dead baby. Until then we're all just paranoid mothers...
But you know what? I could have pushed. I could have fought. I could have changed doctors. I could have asked more questions and required better answers. Those are things I didn't know, but now I do know. And those are things I can pass on to other mothers.
Doctors aren't always right. Go with your instinct. If you don't like your doctor, or if your doctor doesn't go above and beyond to meet your needs and help you feel comfortable and educated, then FIND A NEW DOCTOR.
And even though this is mostly directed towards mothers-to-be, it's really true in any case. I learned from my pregnancy and that shaped how I then interacted with Daxton's doctors and with my next OB during my pregnancy with Tyler. I think most of the "good" doctors appreciate my stance; some other doctors, not so much. (I'll have to tell you guys one day about some of my least favorite former doctors. It's almost comical... now.)
I am now an educated consumer. I learned the hard way. I hope you don't have to.
Thursday, November 26, 2009
The next Thanksgiving we were married. I tried my first Thanksgiving dinner in our tiny little blue carpeted, brown-panelled, glitter-on-the-ceiling first rental in Panama City... And we laughed again. There was so much to be thankful for!
That next Thanksgiving Shep had started his own business, I was finally out of school, and we were building a new house closer to Destin. We felt like real grown-ups :) There was so much to be thankful for!
That next year the company I worked for in Destin closed down and we had to chose between Texas, Oklahoma, Tampa, or Tennessee. We celebrated that Thanksgiving in our brand new home in TN. Thankfully our old house in FL sold a few weeks later. There was so much to be thankful for!
Thanksgiving of 2006 was uneventful. We ate, Shep hunted, I enjoyed some quiet time away from work. Life was normal and peaceful. There was so much to be thankful for!
The next year we were just barely pregnant, with what we did not know yet to be twins :) I had a new job that was flexible and perfect for a new mom. There was so much to be thankful for!
And then came 2008. There was so much to be upset, and saddened, and angry about. But on Thanksgiving, our little kung-fu ninja had his first bites of turkey and sweet potatoes, and less than a week later he was home with us. Not to mention our newest little bun-in-the-oven we wouldn't find out about for three more days :) And, yes, there was so very much to be thankful for.
Which brings us to today. Shep and I are comfortably employed in a time when so many are not. We are finally settled, and mostly unpacked, in our new home where we plan on staying until our nest is empty. As for now, our nest is full... Full of love, full of life... and full of testosterone :) We're surrounded by family and friends who, while maybe not always close in proximity, are always close in our hearts.
There is so much to be thankful for.
Now, on a different note, I want to make mention of a couple of friends who are going through difficult times right now. Please lift up in prayer my friend Kathy and her family. Kathy lost her sister and her mother last week in unrelated illnesses, and this is a very hard time for them. Please also lift up my friend Sheila's 10-month-old great-niece. She was injured in a freak accident at home this week and is now in Cincinnati Children's Hospital with 3rd-degree burns covering her entire body. The doctors are hopeful, but she is battling a bacterial infection and can use all the prayers she can get.
Also, to update on our prayer requests from last week, Mr. Jack and his mom fought the swine flu and the flu lost :) No hospitalizations for baby, or for mom :) Baby Rosemary did not get to have her trach removed due to swollen adenoids, and hopefully the adenoids can come out and the trach can then go. There's a plan in place... But time can pass so slowly some times! Please continue praying for her and her family! Also, Miss Mary Farris's surgery went as well as it could, however, the doctors were not able to do everything now... She's going to have to grow a little more and then they'll try again...
Please keep on praying for my favorite preemies, along with all the millions of other preemies out there, for a safe, healthy, wonderful, amazing holiday season! And don't forget those who struggle during the holidays... Most of us have too many blessings to count... If we passed a few of them on we probably wouldn't even miss them...
Love you all, and HAPPY THANKSGIVING!
Wednesday, November 25, 2009
Tuesday, November 24, 2009
We have a new bathtime song at our house, and I feel it is my duty to share. Really, it's my gift to you...
It should be sung to the same tune as "There's a skeeter on my..."
Well, you can sing it to whatever tune you like.
If your wiener's getting cleaner call for Dad (Hey, Dad!)
If your wiener's getting cleaner call for Dad (Hey, Dad!)
If your wiener's getting cleaner
Don't call for Mom 'cause I ain't seen 'er!
If your wiener's getting cleaner call for Dad (Hey, Dad!)
Yes, I know. And you're welcome :)
Yes, it's very close to Thanksgiving and I should be posting a "What I'm Thankful for" post with all of the millions of wonderful things I have to be thankful for; however, this is not a "Thankful" post. This is a soap-box post. I'm writing this as I go, so it may be a little graphic, and it might offend you. All I can say is, if it does offend you, then maybe you're one of the people who should be reading this.
I am a fairly new mother, and I am one who does not take her children out very often. There are bugs out there, and my children don't need them quite yet, so we don't just go out. We go to doctors' appointments with our children. Other than that, they're pretty much home.
That being said, I'm a grown-up now, and I have been going into public restrooms for a long time. Thankfully I typically have the option of choosing from any of the stalls when I go, so if one looks pretty questionable I can just hop in the next one. No biggie.
Bathrooming with a child in a stroller is new for me. There is only one stall for mom + stroller.
Thus begins my soapboax.
We had a doctor's appointment yesterday, and it was just me and Daxton. I'm completely useless without my caffeine in the mornings, and I admit a big, fat Sonic coke in the mornings gets me through more days than it should. Yesterday was one of those days, so we take a potty break right before the appointment. The bathroom was clean and nice and all was well in the world.
Well, 20 minutes later when we're still waiting for the doc I was doing the pee-pee dance again so Daxton and I trek back to that same bathroom, in a hurry since the doctor would be ready for us any minute.
We met her coming out the door. I knew the second I saw her. Yes, stereotyping is bad, but I knew. One look in the one stall mom + stroller would fit in, and my fears were confirmed.
I'm guessing most of you who read this blog are adults, and most of us are responsible for cleaning our own homes. They might not be spotless, but there are just some hygienic standards that most people aspire to.
I also get that there are physical and cognitive conditions which might render a person unable to maintain their own hygiene or the cleanliness of the environment. It happens, and others should be understanding of that.
However, if you are a grown woman, or man, who is physically and cognitively able to do so, then there is absolutely no excuse for leaving a public restroom in any worse condition than it was when you entered.
This bathroom stall had gone from nice and clean to poop on the seat, pee on the seat, and pee on the floor. There were black specks on the toilet seat, and, you got it, she had not bothered to flush.
There is NO EXCUSE. If nothing else, if she was unable to clean up after herself for some reason, she should have stopped me at the door and said, "Excuse me, there's a mess in there and I'm going to contact housekeeping."
Of course that didn't happen.
At any rate, that's the end of my soap box. I'm still disgusted. Thanks for listening.
Thursday, November 19, 2009
Sick sense of humor, that is...
Our poor, pitiful child with chronic lung disease has learned to work the system. Yes, he now coughs when we ask him if he's okay. Such a cute little manipulator...
Tuesday, November 17, 2009
So, instead of throwing a bunch of statistics your way I'm going to throw you two big universal facts instead...
1. Prematurity stinks. For society, for mom, for dad, for baby. Especially for baby.
2. You can help.
In honor of Prematurity Awareness Day, I created a "virtual band" for Aubrie and Daxton and made a donation in their names to the March of Dimes. You can click this link if you would like to also make a donation in their names, or to create your own band for another special boy or girl out there...
And just as an aside, please all say a quick prayer for Baby Jack, a preemie friend who has recently been exposed to H1N1... He's running a low grade fever and the parents are scared. Please take a moment to lift them up and pray for no flu (and a few uneventful days for his parents!) Also please say a prayer for Baby Rosemary... Remember her? She's going in to possibly get her trach removed tomorrow! Lots of prayers for a successful procedure! And I just found out Baby Mary Farris, our NICU neighbor at Vandy, is going in for surgery #7 tomorrow... Big prayers for her and her family!
Baby Jack does have H1N1. Looks like his mom may have it, too. He's only been out of the NICU for a couple of months... Please pray they can treat this at home with no hospital visits for Jack, and that they both have speedy recoveries!
Thanks again all, for you support for our family as we travel this road and for all the other families that you help without even knowing...
Thursday, November 12, 2009
Wednesday, November 11, 2009
I never, EVER make the bed.
I decided to turn over a new leaf.
Today will be an awesome day.
I go downstairs to get the mail and see a letter from my certification board. Apparently I missed re-upping my certification last December. What?! I know I sent that in. Then again, we were pretty busy with a boy coming home from the NICU last December. Maybe I forgot.
If I send in a form and double the normal funds then all will be well again. That's okay.
I get dressed then feed the Demon when he wakes up. We're trying a new formula that's supposed to help with digestion and decrease spitting up. He puked all over my shirt.
The nurse comes in to start the day and needs to leave a little early on Thursday. I have a hard-to-schedule client that afternoon, but they did say Thursday or Friday will work. Mental note to reschedule while driving in to work. I'll pencil in some clients and work late today so I can be home early tomorrow.
Open up the computer to print a couple of quick things and then I'll be on my way. The printer isn't working. Out of paper, then out of black ink, then not reading the new cartridge, then out of magenta... And this is all before it prints a single sheet. Get that fixed, print my forms, grab my laptop, then hit the road.
Called and rescheduled my client. Stopped to get a much-needed Sonic coke. It's a little flat.
On into work.
Open my planner and realize I already have a training scheduled on Friday afternoon. Try to reschedule it. Still pending.
Open my laptop to do some work and the laptop is not working.
Leave this place to go to my next client. Need to stop by the vet real quick to pick up some medicines and talk about our next options for treating Lola's allergies. Ended up talking to the doctor and meeting a homeless three-legged kitten.
Spent way too much money at the vet, and will probably soon be the owner of a three-legged kitten. I'm such a sucker.
Get to next client late. Had a good visit. Gas light turns on in my car when I leave. Trying to do a million things and running late again. Call my husband to get him to tell me if the medicine we've been giving Lola at night is the generic for Claritin or Zyrtec. I need to pick up whichever med we don't already have.
Not entirely sure how that turned into an argument? Don't have time to figure it out. Buy gas and get to next client.
Had a good visit with this client, too. I leave and call the husband on my way to the grocery store. I know we are completely out of dog food and need a few odds and ends, is there anything else he can think of?
Not exactly sure how that one turned into an argument, either. Oh, wait, yes I do. Men say really stupid things sometimes. This was one of those times.
Get to the grocery store and run through, forgetting several key things I needed. Like the Claritin.
Get home and unloaded. Went to fix myself a sandwich and realized I forgot sandwich meat. Crap.
At bathtime Daxton manages to kick Mommy's make-up on the floor. Spills down the cabinet and all over the rug. And make-up stains are always so easy to get out.
Went to put Daxton's sheet in his crib from where he pulled open his g-tube med port and spilled formula all over his bed last night. Realized the "waterproof" mattress pad on his bed is not 100% waterproof, and mold has grown between it and the mattress from the last big g-tube oil-spill. How gross. I throw it along with the formula-covered pillow and pillow case into the washer.
I go to get it out, and the zipper on the pillow has somehow caught on the pillowcase and twisted, and the pillow's covering has sprung a leak. There are thousands of fuzzy white pieces everywhere.
I pick them up, bag them up, and trash everything but the mattress cover.
I am now sitting in my bed and am about to pull the covers over my head and call it a day.
And what a day it was.
But before I drift off I'm making one solemn vow.
I'm never, EVER making my bed again!
Tuesday, November 10, 2009
Monday, November 9, 2009
You've already heard about the ever-so-helpful eye appointment, so I'll spare you that one... It was on a Friday. That following Monday both boys had well checks at the pediatrician.
Tyler went first. The doctor called him boring other than being "too fat to get health insurance in Colorado." :) He was approximately at the 50th percentile for height and head circumference, and 100th percentile for weight. He's meeting all his milestones right on target and looking great!
Daxton was next, and she also said he was becoming boring. You have no idea how magical those words can be!
She was particularly pleased with how appropriate Dax's muscle tone is... It's perfect. With all the brain issues he has that's nothing short of a miracle!
He's fallen back off the growth chart for his actual age (19 months), but is still hanging out on the low end of the growth chart for his corrected age (15 months.) Other than that, she remains amazed with how well he is progressing!
The following day Daxton had a cardiology appointment. (We absolutely adore our cardiologist if anyone in the Nashville area is on the market for a pediatric one.) She completed the exam and echo and all looked great. The pulmonary hypertension remains controlled and his ASDs are a tad bit smaller. She's going to allow Daxton to continue outgrowing his Viagra rather than increasing it as he gets bigger, and once it's determined to be obsolete she will DC it all together. She said the plan now is to continue letting him grow and watch his ASDs to see if they close on their own or we will close them when he is older if no problems arise with them in the meantime. Soooo, no procedures to worry about in the near future!
And we don't have to go back to see her for THREE months :) I'm so proud of him!
Daxton and I went to the pulmonologist the following Tuesday, which would be last Tuesday, and we got another good report there. The doctor recommended not weaning Dax's O2 aggressively at this time, but rather just taking our time and not pushing the issue. He's off his O2 all day now and only wears it when he's sleeping, but he still seems to need to need his nightly fix. He's only getting a measly 1/16th of a liter of flow, so we'll feed his little O2 addiction as long as we have to...
They talked about weaning his FloVent inhaler, but the doctor was a little hesitant since Dax does have a chronic cough. They're going to wait until we get the results from his next swallow study (which is this Thursday) to see if the cough is more reflux or lung junk, and then we'll proceed from there.
And then after the swallow study we get to go pick up Dax's much anticipated goggles :)
And that brings us to today's visit to the pediatrician with Mr. Ty. He apparently gets jealous of all his big brother's appointments, so he opens his own bag of tricks so he can have some too.
This time we have a bleeding mouth. It didn't worry me at first because I figured it was related to teething, and we've had a few other signs that he might be working on some teefies... But Sunday night his mouth bled more than usual, and so this morning I called the pediatrician to see if it was normal. Of course, you couple bleeding gums with a history of easy bruising and the doctor wanted to see him.
The doctor completes an exam and asks a few questions, then he turns to me and says...
The good news is there are no scratches, lesions, or sores. His gums look good, there are no teeth breaking through, no signs of any viral infections causing the bleeding. The throat looks fine.
The bad news is his mouth is bleeding, and we don't know why or where.
He said that sometimes kids with platelet issues bleed from their mouths just because saliva makes it harder to clot than it is with the rest of our body. He doesn't know that we for sure have a platelet problem, but he says there are other tests the hematologist may be able to run to check for other issues she didn't test for before. So at any rate, we're supposed to keep an eye on it and if it gets worse they're going to send us back to the hematologist sooner rather than later. Hopefully it will just go away. I'd prefer option 2!
Moving on to milestones, Ty is so big and strong... He's pushing all the way up on his hands when he is on his belly, rolling from belly to back, and trying to become forwardly mobile, although he looks more like a beached whale than an agile baby.
Super, super cute though :)
Daxton is still refusing to walk, but he is standing a few seconds on his own. He's making more and more noises, but still no "mama" or "dada." Lots and lots of squeals though! On a super-exciting note, he's FINALLY started to clap his own hands (he's been clapping ours for months.) It's in super-slow-mo and he misses sometimes, but it's very cute. He's also starting to mimic us a little better. He's discovered putting balls/blocks/whatever he can find into bowls/buckets/cups/whatever he can find is way fun, and throwing objects over his gate and crib is the best game ever.
It's progress... Slow, but steady...
So, phew, now that all that is over, I can get on to the good stuff... Pictures!
And just for posterity, I feel the need to throw in a few pics from last Halloween. Daxton had his g-tube placed and his hernias fixed on Halloween day, so we had to play dress-up a little early... He was awfully cute though :) On the vent for a while... Very few treats, but I had a few tricks up my sleeve!!! Thankfully Clyde stuck with me through it all :)
Yes, I was a little stinker... 30 calorie formula + the max amount of human milk fortifier will do that to a boy!
Hope you all are doing well!
Thursday, November 5, 2009
I grew up in a small Methodist church where we learned, among other things, that God is good, Jesus loves us, and prayers are always answered. As I've gotten older my beliefs may not be exactly the same as what we were taught in that tiny little church, but those basic premises have always remained the same.
Prayer itself has always interested me. So many people have so many different interpretations of what prayer is, and how it works, and how you have to do it...
And of course I've always had my own interpretation, too. Mine may be a little over-simplified compared to some, but in my life I've found the simplest answer is often the best.
I don't believe that we have to start our prayers with "Heavenly Father" or end it with "Amen." I don't believe we have to ask for forgiveness in the beginning or ask for our prayers to be answered in Jesus' name. I don't believe we have to repeat a prayer 50 times for Him to listen, or use eloquent words...
Maybe I'm wrong, and I most likely am, but I have never seen God as someone I have to sit down and have a conversation with for Him to hear me. I don't have to bow my head. I don't have to say it out loud. Don't get me wrong, I think there is a time and a place for that, but I don't think we have to do those things for God to listen. To me, God is the Voice in our heads, the Laughter and Tears in our eyes, the Dance in our feet. He just Is. He hears us when we're lost and when we're found; He hears us when we're alone and when we're in a crowded street; He hears us when we hit our knees, and when we're standing in line at the grocery store.
Again, I'm probably wrong, and maybe therein lies the problem. I never really thought that much about it until we found ourselves in the hospital.
Through Aubrie's life and passing, and through Dax's many, many illnesses and ups and downs, I found myself very interested in how people pray. Some would pray for health for Daxton, others would pray for strength, acceptance, and peace for us. Others would pray for God's will to be done, and still others would pray for Him to guide the doctors and nurses. There were prayers for medicines and procedures and surgeries to work, and for better days tomorrow. Many of you remember praying for pee when Dax's kidneys failed...
All in all, I found most people prayed for A.) something to happen, or not to happen, B.) something to happen or not to happen, if, of course, it was God's will, or C.) God's will to be done.
I'll be completely honest with you, in the beginning my prayers were probably a combination of the three, depending on my mood and what kind of day we were having. Over time, when my nerves got so raw from having my entire life tossed around like God's hot potato, there were days when my prayers sounded less like pleas and more like angry tirades. There were times my prayers started with "Listen here you big fat bully..." and I can even remember praying once that if He was going to take Daxton with Him, to go ahead and do it already and quit yanking us around. I don't think I said it that nicely, though, if I remember.
No prayers are more honest than those you utter when your child is suffering. And maybe they're not all so pretty.
There came a point when Daxton was in one of his "trying-to-die" phases when I told God I would no longer be praying for better days tomorrow, or for medicines to work, or for a better chest x-ray or blood gas... From that point on I would be praying for perfect lungs, a perfect heart, a perfect baby. He, and only He, could do those things. I knew He could, but didn't know if He would. I accepted that, but I was not happy about it.
I remember the day that Daxton was moved into the crib for the first time. Our nurse that day is one of the most wonderful, amazing Christian women that I have ever had the pleasure of meeting, and she did a lot towards helping pull me from my God-funks that I got into from time to time. After Daxton was moved to his crib we prayed together that God would keep Daxton's body temperature up so he could stay in his crib.Dax was not able to keep up his body temp, but thankfully God sent lots of blankets and a heat lamp. (Okay, that was a little sarcastic, but that's how it felt at the time.)
I was a believer, and I laid my and my son's life in His hands. I would tell Him that we knew He was in control, and that we accepted that and would live the life He laid out for us. But I still felt His plan really stunk.
You watch children die. Innocent children, with good families. Innocent children with drug-addicts for parents. Children who are very much wanted, and children who are not. Sometimes it's hard to see God's plan. Other times it is even harder.
You begin to wonder what the difference is. Why one child lives and another dies. Why one child survives with no long-term issues, and the next child will forever require the help of others. Did one child have more people praying for him? Were the prayers from more righteous mouths? Were the parents of one child "better" Christians?
No. It doesn't work that way. It would at least make sense if it did. At least we could look at that scientifically and make some rhyme or reason of it. But you can't. It's just all so... Random.
And it is absolutely impossible to go to a funeral for a baby who fought and fought and fought to live and walk away feeling that there's any beauty or justice in that. You just can't.
But everyone around you knows exactly how you should feel. They tell you on good days that God is great and He answers prayers. Then you hear on bad days not to blame God, because it's not Him. They tell you to put your faith in God and not to worry because He will protect your child. And then when you catch a medical professional in an error, others will tell you that God allows free will, and He allows us to make mistakes.
(It's a bit like watching a gameshow or a ball game... Everyone in the crowd knows what to do. It's much harder when it's your life on the line...)
We had heard "God has a plan" so many times before Aubrie's memorial that I told the preacher if he spoke about how Aubrie's passing was all part of God's plan that I would personally throw a hymnal at him. I wasn't the biggest fan of God's plan a that point in time, and told Him as much.
I guess the gist of what I'm trying to say is that, when you go through an extremely difficult situation, your faith gets tested. You wonder, what happened to the God I learned about as a child... The One who was all-powerful. The One who raised the dead and caused the blind to see? Where are my miracles?
I've met people along the way who have lost a child, or two, or three, and tell me they never questioned God. They understood He has a plan bigger than us, and they will succumb to His will without batting an eyelash.
I myself am guilty of questioning. Over and over. And batting lots of eyelashes. And kicking and yelling and screaming. A self-righteous Christian at her best.
(I told God on several occasions that He made me that way, so now He has to deal with it. Isn't that what all good, mature Christians say?)And here I am a year-and-a-half later, and I still don't understand. The pain and the heartache and the stress have lessened, but I still don't understand. There are so many Bible verses on prayer... And none of them that I can look at and say, "Aha! I get it now."
Maybe that's how it's supposed to be? Maybe it really isn't about ultimate understanding, or knowledge, or wisdom. Maybe life is just one long car ride with God, and we're the restless kids complaining "Are we there yet?" and "He's touching me! Make him stop touching me!" while God steers us to the final destination. And then when we get there we can finally understand what the journey was all about.
Or maybe He gives us the keys, a phone, and the map and sends us on our way, knowing that the road is long but that we'll get there in our own time and we can call Him when we get lost.
I just don't know...
But here's what I do know:
I realize now that I knew how to be a good wife... until I got married. I knew how to be a good mother... until I had kids. I knew how to rely on God... until I really needed to rely on God.
I know that, in reality, I know less now that I have ever known. But despite it all, I still have these three things:
God is good, Jesus loves us, and prayers are always answered.
I don't know how, or when, or why.
And I can really accept that now...
Even if I don't always like it.
Monday, November 2, 2009
Shep did really well throughout the weekend, but started having some complications today. We did find out the answer to an age-old question today, just in case anyone was wondering. According to the urologist, yes, size does matter, but twice as big as normal isn't twice as good. (Is that sharing too much?) :P
BTW- He's now going to rest the rest of the week, try a new antibiotic, and he's going to be fine. He now feels that he has some understanding of what I have been through.
And I can almost nod my head without laughing at him. Almost!
(God help him, I love him so much!)
At any rate, my other two boys were CUTE CUTE CUTE in their Halloween/Christmas costumes and I will share as soon as I am energetic enough to upload. They're both doing great... Ty just turned 3 months and is right at 15 lbs, while Big Brother Dax is 19 months now and edging up on 22 lbs.
Life is good :)
Gotta go now, there's a tiny belly in need of filling (isn't there always), but wanted to ask you guys to say some prayers over the next few days for Little Liam. He and his mother have traveled now to go get the therapy I told you about a month or so ago. Please pray specifically for the HBOT to help Liam overcome the many difficulties associated with his cerebral palsy. His mom's blog is www.jenannmom.blogspot.com if you want to stop by and give them some support!
Tuesday, October 27, 2009
(It did, btw, and she didn't :)
I sure hope God appreciates honest prayers as much as I appreciate my friends!
Friday, October 23, 2009
I don't profess to know more than the doctors do about medicine, or illnesses, or physiology, or any of the many other things doctors go to school for.
(Pick your jaws off the floor. Yes, I said it. Doctors are smarter than I am. Most of them...)
I do, however, profess to know more about my son than anyone else on the face of this earth. That's my job. I do it annoyingly well.
And maybe that's why doctors' appointments are so frustrating sometimes.
Take today, for instance...
Wait, let me backtrack to the beginning of this story...
Dax has glasses, right? Extremely nearsighted. Also has a horizontal nystagmus (where the eyes dance back and forth uncontrollably) and a strabismus (lazy eye.) I know these things because I pay attention, and I listen. Again, it's my job.
So, with Dax's eyes dancing back and forth, he can hold his head a certain way and it will cause his eyes to stop dancing. When he holds his head this way he can focus on things because his eyes are still. When we first went to the eye doc he held his head to the side a little. Over the course of the past few months, this focal point has moved and he now has had to hold his head down and look upward to keep his eyes steady.
When he does this he is looking over his glasses rather than through them.
We thought at first he might just prefer looking at things normally rather than the increased acuity through his glasses, but he does it with his glasses both on and off.
So I sent the eye doc an email. I wanted to ask about maybe getting goggles rather than glasses. Also had some questions about vision therapy and maybe patching to strengthen Dax's weaker eye.
I got a call from a resident a few days later. I just missed it so it went to voicemail and I called him right back. He tells me he's just shut down his computer so he can't look at Dax's chart and that he'll call me back the next day.
He asks what is going on... I repeated the contents of the email. "You need to tighten up his glasses," he replies.
You're not getting what I'm saying, dude. Not an eyeglass problem. Eye problem.
He repeats that we need to tighten the glasses. Seriously, not the issue.
"Well, what are his eye issues?" he asks. (So why did he need the chart in front of him?) I go over his eye problems.
"What kind of strabismus does he have?" Okay, seriously, I don't know. You have his chart... And you're trying to be a real eye doctor one day, why don't you tell me?
"Well, we don't recommend vision therapy for anyone. there's no scientific research behind it." Okay, that's fine. Can you give us some exercises to help strengthen the muscular eye issues?
"I need to talk to the doctor. I will call you back tomorrow." Okay. Thanks for all your help.
Two days later I get an email telling me they've set up an eye appointment. Yay!
And it was today.
We got there early to go to the optical center to get our glasses tightened up :)
We sat in the waiting room for a while and filled out paper work about why we were there. On there I wrote something to the effect of "Due to nystagmus Dax is looking over his glasses and getting no use out of them. May need goggles?"
A very nice nurse takes us back and completes an eye exam. We tell her that Dax is holding his head down with or without glasses due to his nystagmus and not utilizing his glasses. We might need goggles? She completes an exam and confirms.
We wait for the resident.
The resident comes in. We tell her Dax is holding his head down with or without glasses due to his nystagmus and not utilizing his glasses. We might need goggles? She completes an exam and confirms.
We wait for the doctor.
The doctor comes in.
"Why are you guys here today? We just had an appointment three months ago."
Phew, boy am I glad we sent that email and talked to the resident on the phone and filled out that paperwork and talked to the nurse and to the resident about it. Way to go, efficiency! And, remember, I just asked some questions via email. You set up the appointment. But I digress...
We tell him Dax is holding his head down with or without glasses due to his nystagmus and not utilizing his glasses. We might need goggles? He completes an exam... Then tells me to turn Daxton on my knee so we can both look at his eyes at the same time. He brings out the light...
"You see how his eyes dance back and forth?" he asks? Uh, yes. "That is called a horizontal nystagmus." Oh, really? "See how he holds his head down and looks up?" Ummm, yeah, I had noticed that before. "When he does that it allows his eyes to focus better. His eyes are steadier that way." Well no kidding. "When he does that, he's actually looking above his glasses, and he's not getting any use out of them at all." Whoa, seriously? "With his vision loss, he really needs to have glasses he can use. I think you may want to consider getting him some goggles."
Boy am I glad we got all that cleared up.
When I asked him about patching or exercises to strengthen the eyes, he told me that what we needed to do was make sure he had things to look at. That's good eye exercise.
Oh, so we need to buy him toys? And books and stuff? And stimulate him? I guess keeping him locked in the closet isn't an option anymore. So glad he told me.
So I do like any good patient and tell him thanks for his time and his help, when what I really wanted to tell him was thanks for setting up an appointment to tell me what I already knew and for wasting my entire day.
Even just some acknowledgement, maybe? A "Hey Mom, you were right," or a "Good catch," or anything to show that he has some minimal hearing abilities. But, no...
Mothers. The most unappreciated medical personnel alive.
Thursday, October 22, 2009
Ha ha, just kidding :)
The REAL exciting news is that Sir Pukes-a-lot (that would be Daxton) has decided that there are foods out there other than baby food and baby cereal that are very yummy, and that he can eat them without throwing up!!! Woo Hoo!!!
(In case you're not up to speed, Dax has a super-strong gag reflex and a tendency to turn his nose up at anything that is not an Oreo, cereal, baby food, a crayon, or a dog toy. Anything that he can feel at the back of his throat comes immediately back up. Daxton has always reserved the right to then pick it up and eat it again if he feels it is then soggy enough to eat. Gross but true.)
But then, for breakfast two days ago he ate some chocolate pudding with sprinkles!
And cream cheese frosting. With sprinkles.
And an Oreo straw.
And a graham cracker.
With peanut butter (yes, we'd already tested, and no, he's not allergic)
A club cracker.
Easy Cheese (I know, brain food, right?)
Hmmm... What am I forgetting?
Oh yeah, chicken nuggets.
And a cupcake!
He did great, and he didn't gag. Not even once. (I did a few times.)
For supper last night he worked on some chicken fries and mac and cheese. No gagging. No puking.
For breakfast today? Soggy Special K with strawberry pieces and milk.
For lunch? Yogurt.
For supper tonight? The options are limitless :)
Tuesday, October 20, 2009
So having two little ones and one big one and a full time job means very little time for writing here lately... And I have very few things to report anyway. The kiddos are great, and they both have well visits coming up on Monday. In addition, big brother has an eye doctor appt this Friday, then a cardiology appt on that Tues (I think?), and then we of course will be celebrating NNYH Day on Thursday. Or at least I will. Pending a low frequency of whining. Not counting on that, though, now that I think about it. Oh well. ;)
It's bedtime 'round these parts, but for now I just wanted to share with you a tiny pearl of wisdom...
At no time EVER is it appropriate to utter the following phrase, or any of the many variations of it, when you are talking with someone who has recently given birth:
"Mollie, did you have the baby?"
"Yes, he's two months old."
"Oh, well you still look pregnant."
Have a nice week!
Tuesday, October 13, 2009
I wonder if they throw parties at United Health Insurance when they go that long without hearing from us? I'm not sure who'll be happier when the hubby's vasectomy is complete, us or the insurance company. Which reminds me...
October the 29th will officially become "Neuter Your Husband Day." Please join us in our celebrations!
Other than declaring a national holiday, it's been pretty boring around here. Ty is well on his way to being the next spokesperson for Jenny Craig Jr., and Dax is amazing us everyday with how smart he is... And of course I wasn't here today when it happened, but the nurse said he let go and stood on his own for a few seconds today until he realized it and plopped on his cute little butt. He's getting closer and closer...
And that's all the news for now! Will try to post some super-cute new pics tonight if I get the time and motivation... But don't count on it!
Saturday, October 10, 2009
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Thursday, October 8, 2009
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Note: To play video messages sent to email, Quicktime@ 6.5 or higher is required.
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Sunday, October 4, 2009
Daxton is doing great. He's so stinking close to standing on his own... He'll let go for a few seconds but then holds on again. If you help him stand and then sneak your hands away, however, he sits down immediately. We've tried that trick so many times now that he refuses to stand up holding our fingers anymore, and if we try to force the issue we end up dragging his butt across the floor like a wormy dog. He crawls at about 20 mph on his palms and the bottoms of his feet and never, ever stops moving.
His old PT, Yum-Yum, came for a visit last week, and she seemed amazed at how well Dax is doing. She saw no inappropriate tone or patterns of movement, and thinks he is so close to standing and taking steps. He's such an awesome little boy!
Eating is going better. Main meals are still cereal and baby food fruits and veggies, but he is making progress with chunkier foods. He can now finger feed himself small cereals and cookies, and we've even sneaked in some green beans and chicken pieces. He's a big fan of Oreos, but those have to be eaten outside while naked. But isn't that how we all eat our Oreos?
And speaking of eating, he's doubled his amount of teeth in the past three weeks, and halved his amount of drooling. And, yes, all the new teeth are discolored, too. Still, his smile is so amazing that you hardly notice.
We were worried that maybe our boys didn't have enough to play with, so the hubby went to my parents' last weekend and picked up their old piano. I sat Dax in my lap and after just one bang of his hand he was in love (and we were in earplugs :) His high chair fits perfectly under the piano, so we just strap Dax in and he will just play and play and play... And maybe I'm a crazy mama, but I swear there's some music behind what he's doing... He just has a little fine-tuning to do.
On to Mr. Ty... He's growing so fast! Our littlest man can now roll over from his belly to his back, and his arms and neck are getting so strong. He's eating us (and stinking us :) out of house and home, and perfected his "pick-me-up and/or feed me" whine. He's also figured out his mommy and daddy will do some crazy things to get him to smile... And when he finally does it lights up the whole room.
His hair has settled in at a nice strawberry blond, and it looks like his eyes might be staying blue. He's also got the tiniest little cleft in his chin like his daddy, and one dimple like his mama. He's absolutely precious!
The brothers are getting along much better now. Whenever we put the two together Dax just smiles at his brother and Ty just stares at Dax with fascination. Even though they're getting on so much better, it still blows my mind that boys and girls with sisters and brothers grow up with both eyes still intact.
As for us, the hubby's been working hard, and I was too up until I left to go to Daytona Beach for a conference last week. I was able to catch up with a lot of old friends and catch up on some CEUs that I missed with all the craziness of last year. My mom and dad came up and played with the babies and cooked up a bunch of yummy food for us while I was gone. Going away was harder than I expected, but I did get to read a whole book, spend some quiet time on the beach, and learn how to artificially inseminate an elephant. So at least I accomplished a few things!
And, just in case my blog has been boring today, I thought I'd share that I'd been feeling a little strange so last Saturday I took a pregnancy test, and it was positive.
Bask in that for a minute. Feel the burn.
I called the hubby, who just happened to be five hours away on his way to bring home the aforementioned piano. After the initial shock, he threatened to drive off a bridge. I told him he couldn't, that he had to deliver the piano first. I told him he was being irresponsible since I had not yet decided if I was going to jump off the house, and he should make sure I don't before he drives off the bridge just to make sure our kids aren't orphans.
Within an hour or so we decided that maybe we would survive, and started working out the practicalities.
In the week that followed, I probably spent $50 on pregnancy tests, and, you know what? They were all negative. I took them in the morning, the afternoon, and the night, but no positives. And today it became official. Not pregnant!!!
And we all breathe a collective sigh of relief.
I love, love, love my babies. I love, love, love my husband. I love, love, love my sanity. I think we'll keep things the way they are :)
The vasectomy is scheduled for this month, btw. We're counting down the days!
I guess that's all our news for now. I'm having some downloading issues, but I promise to post some pics and videos soon. In the meantime, I have a question for you...
If I wrote a book, would you want to read it? What would you like to see me do with it? And if you're a NICU parent, would you be interested contributing some of your favorite NICU stories?
Just a thought... I have a project I really want to do, but it would be a big undertaking and if I can't win, I don't want to play :)
So... Thoughts? Comments? Suggestions?
Friday, September 25, 2009
So there is a story I have been wanting to get out for a while, but my words seem to fail me on this one. I'm going to give it a shot tonight, though...
Every parent-to-be, I think, experiences The Fear. That worry, that "what if" that maybe you don't talk about, but it's there. Every parent dreams of their child becoming the President, or a doctor, or a sports legend. No parent hopes for a child who is disabled or sick. In fact, most parents will tell you that is their biggest fear.
Why is that? Is it a fear of what the child will face? Or is it a fear of our own weakness?
With improvements in prenatal testing, parents are now able to know with great certainty if their children will be born with certain syndromes or birth defects. Many parents opt to abort their pregnancies if there are foreseeable issues, and just "start fresh" with a new child who might be okay. I can understand that reasoning. When my husband and I first became pregnant with the twins, we both had The Fear, and we had to wonder... "What would we do?"
Don't get me wrong, we're both pro-life, but still we wondered...
So we opted out of prenatal testing... And we dreamed of our children being presidents or doctors or sports legends... And lived with The Fear.
I asked earlier why parents fear. Our fear was selfish. We weren't worried about our children, we were worried about us. Were we strong enough? Could we handle it? Would it inconvenience us if we had a child that was different? Would it embarrass us?
And then Aubrie was born... Way too early, with a brain bleed she would never fully heal from if she lived. And you know what? All of a sudden, it didn't matter anymore.
The Fear disappeared. We just wanted her to live. She was ours, and she was perfect.
Over our months in the NICU with Daxton, we were faced several times with potentially life-altering diagnoses. I admit, sometimes The Fear crept back, but this time it was not for us. Would Dax always live in pain? How significant will his disabilities be? Will other kids make fun of him? Will he even live long enough for us to know?
The night before Dax was to discharge, and two days after we discovered we were pregnant again, a neurologist gave us a devastating diagnosis. The MRI results pointed towards a genetic syndrome that would render Dax dependent on others for the rest of his life, and there was a 25% chance our new baby would have the same disorder. He told us to take the night and think long and hard about whether we wanted to abort the new baby after genetic testing was complete.
We were heartbroken.
When we lost Aubrie, and when Dax was so sick, we discovered a strength we never knew we had. We were blessed beyond measure. But could we possibly go through it again? Could we handle it? There's no way...
But then it hit us.
If someone had told us at the beginning of our first pregnancy that our twins would be born months too early, that our daughter would die, and that our son would spend eight months in the hospital clinging to life... That our son would have more health problems than we could fathom... That he would come home on oxygen and monitors and feeding pumps... What would we have done?
But, what would we have ever done without them? Our broken, imperfect little babies had taught us more about living, and loving, and fighting, than either of us had ever learned before. Our broken, imperfect little babies had shown us what real happiness was all about. Our broken, imperfect little babies had taught us how to treasure the small miracles in life, and how to seek the impossible even when it's completely out of reach.
And all of a sudden we realized there was absolutely nothing to fear... And with the birth of Tyler, we were able to witness another sort of miracle entirely.
So does God give us children so that we can teach them, or does He give us children so they can teach us? I'm not entirely sure. What I do know is that none of our children are perfect. Had you known in the beginning that your child would one day be anything less than perfect, or grow into a less than perfect adult, what would you have done? And what would you have missed out on?
I, for one, am incredibly thankful to not know.