Creative Writing

I am publishing part of one of Eric's recent assignments in his creative writing class. I know he won't post it, but I think its awesome. He was asked to just write anything that pops in his head for 15 minutes straight. I believe it's what fellow blogger Melissa Pelletier refers to as "stream of consciousness". So here is the excerpt:

"Becoming a parent gives you super powers. I never see anyone wearing capes, however. You can't fly or see through walls. You suddenly have good instincts you didn't have before. You can operate on much less sleep. You may be given the ability to magically seep food from your body for your newborn. I didn't get that superpower. You suddenly feel the need to become a better, more responsible, healthier person ..."

Ain't that the truth...

What's New

1. Eric started school this past Monday - boo. He's taking two math/engineering classes and a creative writing class for elective. The creative writing class seems to be interesting, Eric has already written a couple things that are pretty good! Although, that's not too surprising. I'll have to make sure he posts some of his stuff up.

2. Lilly had a pediatrician appointment this past Friday that went very well. Her doctor was very happy with her breathing and how she is doing overall. And best of all, Lilly is now a whopping 7 pounds and 6 ounces! What a big girl. Her next pediatrician appointment will be in four weeks for shots :(

3. This week will be our first doctor appointment free week EVER for Lilly! How exciting is that.

4. Wednesday John had surgery on his neck over at Lexington hospital. He had a plate put around his vertebrae and I think they did something with the discs too - ouch. Lilly and I went over after his surgery to go visit him and Eli. He seemed to be doing well although I know it's a huge pain in the neck - literally. He's not allowed to hold more than a cup of coffee for the next 4 weeks! He can't hold either of his babies for that whole month too!

5. My parents went to Puerto Rico last weekend because my grandfather passed away. He was 97 years old - so luckily lived a very long life. They are going back down to the island this coming weekend for the funeral and also they were already planning on going for a wedding. I know my parents are tired of the traveling!

6. Lilly has gone two nights in a row where she only gets up at 2 am to eat! Goes to bed between 7pm and 9pm and back up for the morning around 6am. Her longest stretch has been 7 hours!

7. Lilly's 1 month birthday was Friday! I felt neglectful because I didn't do anything, but we were SO busy Friday. Sorry Lilly. We'll make it up to you I promise!!!!

8. Lilly can hold her head up pretty good - it gets a little crazy sometimes though when she get tired of holding it up! You have to watch out that she doesn't head butt you.

I think that's most of the news for The Jones Farm for now. Here's some cute phone pictures to make your day.

I'm taking a stab at uploading video. Here's a 30 second clip of the day we brought Lilly home. She was only 5 days old. Nothing exciting, I think Mari just got done changing her diaper after feeding her. And if you listen closely you can hear her hiccups.

Fact of the Week

Did you know?

Individuals with Down syndrome (trisomy 21) have a significantly decreased risk of cancer (except leukemia). Apparantly, the tumor suppressing factor gene is found on the chromosome 21. With 3 copies instead of 2, more cancer fighting power. It's like they're super heroes.

My (other) Babies

Yesterday my nieces and sister came to visit! I was so happy to see them, I was having Martin family withdrawals. I am guilty of calling Isabel and Olivia MY babies... They are so scrumptious after all and they are my awesome sister's offspring! Really who wouldn't want to claim them (well, except when Isabel throws a tantrum because you won't give her ice cream for breakfast...)

Olivia is already 3 months old now! Holy cow how time flies. Also, it's amazing to see the difference that two measley months make - look at the difference between Lilly and Olivia in these pictures! Isabel was a ball of energy as usual, thank goodness Eric was there to play and rough house with her. Isabel still refuses to call her sister by her proper name and still calls her "The Baby". She has no problem calling Lilly by her name! She will even make sure you know that Olivia is NOT Lilly, but that she is indeed The Baby.


MMMmmm. Chips and apple juice. Good times. Oh and by the way, what gene pool does this kid come from? Blonde curly hair???





I can't wait until Lilly is this 10 pounder size! You can really throw them around your hip at that size! Olivia is my twin - I have to scan a baby picture of me - it's really scary! Eli even mentioned she looks more like my kid than hers!





Lilly looks like the Godfather here. Hehe.





These cousins are gonna get in trouble. Whatever you do Lilly don't listen to Isabel!! Next time we'll try to get pictures of Lilly awake!

Doctor's Visit ... Again

So we had yet another doctors visit yesterday. It was to the cardiologist for a recheck. She has been on the Lasix for a week now and seems to be improved. We got her weighed again and she's at 6 pounds and 14 ounces. I was really hoping she'd be 7 pounds by now, but oh well. The doctor was happy with her though, apparantly a lot of kids don't gain weight for the first couple weeks on the Lasix. So I guess gaining 1 ounce is better than nothing! Also, her murmur is a little bit louder this time, which is a good sign as well. Overall, it was a good appointment. We will see him again in 3 weeks and she will get a repeat echo.

Monday we will meet with her early interventionist for the first time. I'm excited about that. She will evaluate how Lilly is doing developmentally for now and possibly give us some homework to do with her. I don't know what she will be looking at exactly, but I imagine it will be the generic tummy time kinda stuff that every baby needs for now. Then next Friday it's back to the pediatrician. She wanted to see her in between the routine visits just to keep an eye on weight and such.

Otherwise, our Lilly pad is doing awesome. I fall more and more in love with her everyday, if that's even possible. And she gets cuter and cuter every day as well!

-Mari

How many?

Lilly, can you show daddy how many points are on the deer and where they are?



Very good Lilly. It has ten points on its head.

The big 3 (weeks) in pictures

Lilly Pad helps with insomnia



And makes a great remote holder



Ready for take off



Look ma, no hands



I just want one taste



Busted, texting and nursing is a big no no

Yummy Baby

Sorry nothing new or exciting, just a yummy baby.

Hmmmm.....

I feel your pain mamas

Today I experienced the excruciating pain that could only be compared accurately to giving birth without the luxury of an epidural. I feel your pain mamas out there.
Yesterday evening I went out at dusk with my trusty video camera in the hopes of videoing some deer or other wildlife around our property. Like I have done many times before(Mari has too) I took my flip flops off when I got down to the road behind our house to be extra stealthy. It's mostly sandy so it's actually pretty nice to walk barefoot on. I didn't see a darn thing so I walked back to the house defeated.
Just before I put my flip flops back on, I stepped on a thorn and it shot up into my heel. You would think that would have been the worst of it. That was nothing compared to the medieval torture I was to endure the following evening.
I couldn't get at it because I'm not as flexible as my precious little daughter Lilly, and the doctor of the house was busy so it got put off until the next day. So, after a day of walking on the thorn and embedding it deeper Mari started hacking at it. The screams sounded like they could have been from one of the Saw films. As I was being operated on, without any anesthesia, I kept imagining the stories I'd heard of the Civil War era soldiers getting their legs cut off by surgeons to prevent the spread of gangrene. During the surgery, I was begging for the sweet relief that could have only come from removing the appendage. Prosthetics these days are almost like the real things, sometimes better. I think with proper rehabilitation I will soon regain use of the foot.
For the sake of those with weak stomaches or small children that might stumble across this blog, I'm going to hold off on putting up pictures of the wound sight(she dug so deep I'm surprised I have much of a foot left). Here's the thorn after the blood was cleaned off it.



I know right. Huge! I'm sorry I had to show you all that.

And now, so that you didn't waste time from your valuable lives reading this, here's a picture of Lilly Pad.

A Busy Week

It's been a tiring week already (and it's only Wednesday). Not just from being new parents, but I feel like we've been tossed around between all these dang appointments.

Monday our pediatrician called us with the results of the chromosome testing and to no surprise it confirmed her Down syndrome, in particular Trisomy 21 (the more common variety). I was expecting this news all along, but it is still hard to swallow knowing that it is confirmed and set in stone. It felt like the first day all over again on Monday. Amazing how a microscopic piece of DNA can change our lives. Tuesday we began our recooperation once again. It's time to pick up all the pieces and move on, Lilly's got a great life to live here people.

Tuesday we had another pedicatrician's appointment. I was concerned that Lilly's breathing may have been getting more labored over the past day or two. It is really hard to tell when you are with her 24/7 whether there are any changes. But, Dr. Grooms did feel like she definitely was breathing harder since last time she saw her. Also, she only gained 2 ounces since her visit to the cardiologist, although it's hard to compare scales. After consulting with our cardiologist they decided that we ought to go ahead and start her on the Lasix medication. The pharmacy had to special order it, so we just got it this afternoon and we will start it this evening. I hate to have her on medication already, but I really do think this will help her feed and breathe much easier.

Then today we had an appointment with our Disability Coordinator. She was awesome, she helped us get all our "stuff" together. She answered all our questions and gave us an idea of what to expect as far as medical/therapeutic care in the future. She also helped me with the DAUNTING tefra application (in order to apply for medicaid). I have been ignoring the 30 page application because it was quite frightening to look at for an extended period of time! Now I feel much better about tackling it now that she helped me go over it. Paperwork here, paperwork there. It is such a dizzying mess, between insurance stuff, disability stuff, legal stuff, and then the everyday mess of regular bills. I just can't wait until all of it's done and I can just take care of my baby without always thinking of what needs to be filled out or mailed off. Sorry for the rant, but someone's gotta hear it.

Tomorrow will hopefully be our last appointment for the week with Babynet. Thank God it's here at the house! I'm so tired of driving, especially since we live in the boone docks and always have to drive 45 minutes to go to Columbia all the time.




Okay, enough of the boring stuff. What's new with Lilly? She's already changing and growing daily, it's really neat.
1. She is starting to smile when you touch her or talk to her.
2. She "talks" now, I think it's called cooing or something like that. It's mostly in her sleep that we hear it... "I hear the secrets that you keep... When you're talking in your sleep..."
3. I woke up last night twice to find her lying on her left side, not her back... That's kinda scary!
4. The last two nights she's slept about a 4 1/2 to 5 hour stint.
5. She actually enjoys her playmat with the lights and hanging toys. She watches it all and grasps when you put the toys in her hands. She particularly likes the crinkly parrot.
6. She enjoys her classical music, and especially enjoys when you read books to her. It's the best way I found to get her to sleep.
7. She is such a cuddler! Plus side - who doesn't love to cuddle, down side - I'm trying to learn the art of placing a sleeping kid down without them realizing they're not being held anymore! Eric's getting pretty good at it.

Even with all the chaos of the last couple weeks, this short little list sure has made it all the worth while! We love you Lilly!




PS All photo credits for this post are to awesome Melissa!

Ongoings and Such

First and foremost I would like to celebrate that a) Eric is done with all his school work and b) I am done with his dumb online art appreciation class! Lilly was so kind as to snooze here with me while I typed the final paper for the class and listen to her classical music. Lilly is also responsible for Eric's B in his engineering class. He was supposed to have the exam last week, but because all the hospital drama his professor was going to have him take it this past Thursday. Well, Eric called him Thursday and the professor told him he could come take the final exam or just take the B for the class! How awesome is that! Thank you Lilly.




Now for the Lilly update. Certain Grandma's have been reprimanding us for taking so long to update; it's only been a couple of days! Well, little Lilly has been doing awesome! She is eating great and is putting on some chub. It blows my mind how fast they can gain weight! She left the hospital at 5 pounds 13 ounces, at her pediatrician check up the next day was 6 pounds 3 ounces, and at her cardiologist appointment yesterday was 6 pounds 11 ounces! Holy frijoles, that's like me gaining 100 pounds in a week. (Okay, I don't really know what that compares to, but still!).

So the cardiologist appointment, that is what we've all been holding our breath for. It was a very positive appointment and checkup. She was born with a PDA (a shunt between the 2 major vessels still open) and an atrioventricular septal defect (a hole between the 4 chambers of her heart). They repeated an echo on her heart today. The PDA has closed up on its own - way to go Lilly. The septal defect is still present but as far as size goes, only in the mild to moderate range. She is starting to show signs of her heart defect - mainly just breathing heavy and fast, especially when she eats. The doctor said that he likes to see these signs develop because when they do it means surgery will be less risky to perform (something about there being less pressure in the heart/lungs). Though I hate to see her pant, I guess it's a good thing. If it starts to interfere with her eating she will be put on some medicine to alleviate it. As far as surgery goes, she is not in dire need at the moment since she is eating great and gaining weight. He gave her a 50/50 chance of needing surgery, but I got the impression he was still leaning towards her needing it. The good thing is that if she needs it, it will most likely wait until she's 6 months to 1 year of age. She will have another check up in 2 weeks and then once a month afterwards. If she does need the surgery its got excellent results and a super quick recovery time (only 5 days!). There is a state of the art pediatric cardiac surgery facility just 2 1/2 hours away in Charleston. Eric and I have prepared ourselves for the fact that she will probably need surgery. If she doesn't need it, then hurray; if she does then we'll be prepared at least.

Lilly's next appointment is at the pediatrician's again this coming Tuesday. Then we have an appointment Thursday here at the house with some people from a organization called Babynet. I don't know too much about this service, but I think it's a service that connects you to all the resources you need for kids with disabilities. Things like physical and speech therapy and other sorts of specialists she may need. Also they hook us up with things like medicaid to help supplement our current insurance and such. They also connect you with other families in your situation and there are fun events hosted. So that appointment will be interesting to see what's in store.

Also, big thanks to everyone who has been coming and feeding us and cleaning our house! We really appreciate it. I don't know how I've managed to lose baby weight with all this food! But, hey I'm not complaining.

Here's a few pictures to make your day!




Suey here DYING to play with her new baby. She is such a kid loving dog and she just doesn't understand why she can't play with her already! I keep telling her she must wait.




Here is George Porge finally not terrified of our new addition.




Grandpa Jones




Aunt Lindsay

Stay tuned for more pictures to come. Lilly will be having her first photo shoot today at the house by yours truly Melissa Devoe (check out her photography blog). Also, just wanted to note I added a blog to our list of "Rad Blogs". It belongs to Melissa Pelly, she left us words of encouragement on our blog when we found out about Lilly and her Down syndrome. She has walked in our same shoes, just 6 weeks ahead of us! It is amazing to follow her story as well and see how crazy similar it is to us, good to know we're not alone.

Enough of the sappy posts

With all of these sappy emotional posts lately I can't let everyone forget that I'm a big hairy man who likes to hunt and do other manly stuff. I picked up the memory card from my trail camera today, with all of the excitement as of late I had forgot to go check it. I got a bunch of really good pictures of some nice deer. There was one "bachelor group" of four or five hanging around the salt lick for a few hours. All of the bucks are still in velvet and most likely still growing. Hunting season starts on September first. Here are a few of the pictures.
The first one is a really nice 10 point that looks like he's probably bigger than the 12 point I took last year.



I didn't get good side pictures of this deer so it could be the same 10 point as above but it looks to me like it's only got 8 points but again it is a very nice deer for this area.



And here's one from a few weeks ago. You can see the racks on the deer from just a few weeks ago are much more underdeveloped than they are this week. You can see four bucks in this picture and most exciting is they are hanging around during the daylight hours. Look at the spread on that buck, he has some really nice potential and may even be the 10 point in the later picture. Like a dummy, I let the bunjee cord around the camera get in the way of the lens a little.



Ok, so this one wasn't from this year but this guy gets me very excited every time I look at him. This picture was taken almost in my back yard. I call him the "big nine" and hope to meet him this year.

"What's the Big Deal?"

Hi everyone! It's me, Mari. I'm finally finding the time to put up a post. Eric has been doing a wonderful job updating the blog all about Lilly. He has already become a great father and is still the wonderful husband he has always been (if not even more wonderful)! I know he doesn't think so, but he has done such an excellent job with Lilly already and he's been coping with everything quite well. Really, look at this picture, who can deny what an awesome dad he already is!







As for me, I can't lie, it has been pretty hard. Like Eric, I had that little voice in the back of my head nagging that something might be wrong after she was born. But now, a week later I can say that I am quite happy (promise, even with all that lack of sleep).

So the title of this posting is a quote from Lilly's Tio Michael that Eric has already shared with all of you. This describes where I am at now with all of the ups and downs of the week. Seriously, what is the big deal? I have a healthy BEAUTIFUL daughter that just happens to have Down's Syndrome. Her heart needs some fixing, but nothing that isn't curable. So it's time to move on. We've all been talking about Lilly's health, how about let's talk about the actual little girl!




Lilly is such an awesome baby. So far she has been quite patient with her new parents. I must say that she is the easiest baby there ever was. Her version of "fussy" is getting all wiggly, grunting a little, and letting out a short cry rarely. There is always a reason to fuss as well- she's got a dirty diaper, she's hungry, or she just wants a hug. Who can complain with that!

She already does everything above and beyond. She went to the pediatrician yesterday and did very well. I have to brag, but she already beat most of her "peers" to the first milestone! So all babies lose weight after they are born. The goal is that they are back to their birthweight within 10 days. Well our Lilly, yeah she showed them, she was already 3 ounces past her birthweight at JUST 6 days! A whopping 6 pounds and 3 ounces. This may have to do with her ravenous eating... she's pretty talented in that department (as well as the dirty diaper department)! I am so excited to see how she progresses and look forward to watching her grow and develop. BUT I really don't want her to grow up either, maybe she could stay in the 12 month old range forever? That's a good compromise.





Another thing, she is the most smiley baby I have ever met! I know people say babies don't smile this young on purpose... I don't know though, it's crazy how much she smiles. I really think she is a very happy girl. She also spends a lot of "awake" time just watching and taking in everything with her big beautiful eyes. It is so fun to spend time with her and watch all the cute little expressions she makes.




I love her to pieces; there are no words to describe it! She is the best thing that has ever happened to our little family. I truly would never change a thing, even after this stressful week.




Sorry, Lilly, I couldn't resist this last picture!

A rocky start for Lilly's daddy

I have been a little shocked as to how much support we’ve been getting so far, especially from complete strangers. It means a lot to both Mari and myself to know that we aren’t alone in this journey. However, I don’t feel like I’m deserving of some of the praise I’ve been getting. I’m not the perfect father I want to be and Lilly needs me to try to be.

On Monday I was looking forward to the challenge of being the best daddy in the whole world for Lilly. On Tuesday, when Lilly finally came, I was very excited to have gotten her here successfully and both her and mommy were doing well(and I didn‘t pass out during delivery). When Lilly was being examined by one of the nurses at only a few hours old it occurred to me that she didn’t really look like I had expected her to. I even remembered thinking that she looked like she had down syndrome. I can’t describe how terrible I felt. In my mind I knew she was supposed to be the most beautiful thing I had ever laid my eyes on, however, I was looking at her and pointing out her faults. My heart sank because I felt as though I had already failed Lilly as a father within the first couple of hours of her life. Something had to be wrong with me. I spent the rest of the day trying to be positive and telling myself that I was imagining things and, most importantly, kept my thoughts to myself. The next morning Lilly was examined by a pediatrician and she told us she wanted to run some tests on her. I prodded her a little and she finally let us know that they were testing her for down syndrome in particular. That was the first time I heard those words out loud by anyone when referring to Lilly.

That day, Wednesday, was a very emotional day. It wasn’t that I ever felt as though I was disappointed in Lilly or the way she was but I kept thinking about the things that made her different from the average person and how our lives would be different than I had imagined.

Is she going to be able to attend the day care we’ve already signed her up for?
Will she be able to function well in society when she‘s older?
Are people going to stare at her in public?
Will she be good at sports?
Will she ever fall in love and have a family of her own?

Two things were certain in my mind: I didn’t deserve her, and she deserved better than me. But, I knew she was stuck with me so I had some growing to do.

It’s amazing what a difference a couple of days can make. Every day we went into the nursery to feed Lilly numerous times. Each time we went in to feed her I got to know her a little better. In a short time I came to realize that this little girl was perfect and that I was the one with the problem all along. Now I can say that I am ashamed of the way I felt on Wednesday. How dare I even compare her to the average person? A good father thinks their children are special he doesn’t wish they were average. I plead temporary insanity.

I have pushed the terrible thoughts from my mind. But don’t give me too much credit, it has been easy. Time with Lilly has been all the therapy I have needed. And, if you were wondering, I can now say I truly, honestly, deep down, think my daughter is the most beautiful thing I have ever seen. I am completely in awe of her and am over the shock of her diagnosis and I’m ready to meet the challenge of being the best daddy in the whole wide world for Lilly. I just hope she’ll see me as a success in that area one day.

I hope I haven’t offended anyone with any of my words. I would understand if anyone thinks less of me. I hope my wife isn’t disgusted with me because nothing would sadden me more. I am sharing my feelings with anyone who wishes to read this blog because I have a hunch others have been in my position before (or will be) and felt the same waves of emotion as I have. On the other hand, maybe no one has made the mistakes I have and later I will be dragged through the streets and stoned as I‘ve felt I deserved. At the very least, getting this off my chest is part of my healing process.

I’ve been called a role model and inspirational in the past week. I haven’t done anything to deserve those titles. But, hopefully, if you check in on the Jones Farm in another 20 years or so, Lilly will tell you that she has the best daddy in the whole world. That’s the only title I hope to earn some day.

For now, let’s hope and pray we get a good diagnosis for her heart. Hopefully Mari will put up some adorable pictures of our little Lilly Pad soon to lighten the mood here.