Events of Last Week

We are less than a week away from David's heart cath. I'm freaking out. Since we've made the appointment, I haven't been sleeping well at night. I can seem to shut off my brain. So, we've been napping together. This is the reason I can't get anything done. How can you not just lay there and watch this sweet face?

We met with and were accepted into the Tennessee Early Intervention Program. Mostly b/c David wouldn't eat anything that looked like food. Paper, books, sticks? Sure, right into the mouth. Maybe he just needed fiber. So we met with the girls from TEIS and have an appointment for Tuesday to meet with the speech and feeding therapist. So since we talked about him not eating, guess what the little stinker decides to do...

Yep. Those are carrots. He's eating 2-3 jars of food each day. Just another reminder that he will do what he wants when he's good and ready.

Last week, we headed down to Memphis to go to the zoo with our friends, Peggy, Luke, & Ben. We had a great time (and burned some calories, too!). David loved pointing out the animals:

"Look, there are the penguins!"

"Mom! It's a panda!"

He's also starting to like wearing hats. When he was tiny, he wouldn't keep them on. Now he puts Daddy's hat on whenever he can. We got him the cutest "old man" hat. This is the first time I have been able to get a picture of him in it.

He sure does love his Cards!

Now that he's keeping hats on, apparently he's afraid they'll fall off. I didn't notice he's holding them on in both pictures!

We found out 2 things he hates this week. The vacuum and power outages. I vacuumed before we had company, and he had a total meltdown. I'm talking sitting down with his forehead on the ground, alligator tears, gasping for air. And 2 hours later, he finally let me put him down. I guess I'll have to save the cleaning for after he goes to bed.

There was a storm a few days ago. Wind, rain, thunder, lightning. None of it phased him. However, when the lights flickered, you would have thought something bit him. He screamed and jumped and ran (as fast as his wobbly legs go) to me. It's not like it was dark out - maybe 2 in the afternoon. But the flickering got him. We got the flashlight, a lantern, a couple of those push-on-push-off lights. He would not let that one go. He carried it around the house - even after the power came back on. We were out of power maybe an hour. It was clearly the worst day ever:

I can't believe I haven't posted a link to this yet! David is on YouTube! This is the link to my videos:

David On YouTube!

Also check out Drew's videos:

Drew's Videos 

Well, he's napping, so maybe I can be too!

:-)

It's only been a month!

WooHoo! Only 1 month between posts! Look at us go! :-)

I spoke to our cardiology office today and they have tentatively scheduled David's heart cath for June 21. We say tentatively b/c the cardiologist may want to check the ECS (Electrical Conduction System - electrical pulses that regulate heartbeats) of his heart. If that's the case, it requires a bit more of an in-depth cath, which won't be possible until sometime in July. Either way, they are shooting for 4-6 weeks after the cath to do the actual surgery. So, by the end of the summer, we will (hopefully) be done with the whole "jimmy rigging" of David's heart. Given, we don't really know what's going to happen after that, but we knew this was a 3-stage surgery process. It will be a relief for it to be done. And then a whole new set of worries come in. But, I'm not in a dwelling-on-the-dark-side mood, so we will skip all the "what ifs" for now.

Every day I am more and more astonished at how anything gets done around here. I know I'm a bit biased, but he is one cute kid. He's becoming such a little man and growing into his personality. He's so much fun!

So, at the end of April, my awesome friends and sister volunteered to run in the Nashville Rock N Roll marathon series in honor of and to raise $ for David and his medical bills. Peggy & Susan ran the 1/2 marathon - they were awesome! Since I'm such a slacker, I knew I wasn't prepared for that. So, I did the mini-marathon. And I convinced some friends and my sister to switch too! So there were 2 rock stars (Peg & Susan) and 4 weenies (me, Sister, Lee, & Jamie). :-)

I would like to give a big thanks to all of our supporters and those who donated to our TeamDavidHayes fund! We raised $675!! Woohoo!

Here's a pic of David & Drew cheering everyone on:

Well, I had more pics, but my stupid internet doesn't like to reach upstairs, so I can't upload them...I guess you'll have to wait for the next blog! Here's hoping it won't be too long! :-)

Night, all!

~Nicole~

Our New House

Ok so maybe 4 months is a little bit of an excessive time to not post a blog...

So - it's been a whole week since we moved to Union City. We miss our friends and Mt Olivet church family, but we are also super excited about our future with UCCPC! Here is a pic of our new home. We love it - although it's still full of boxes!

David had an appointment a few weeks ago with the cardiologist. They said everything looked great. They'll send the info from his appointment to Dr. Kim (the heart cath doc) and the cardiac surgery team. We are looking at the cath early this summer and then surgery later in the summer. I'm in a weird place about it. I'm ready to get it done and over with so it's not looming over us anymore. But I'm also scared out of my mind. The first surgery was scary because it was our baby laying there. The second was worse b/c it wasn't just our baby hurting - it was our son - we could tell that he wasn't himself. Now that he's 16 months old (16 MONTHS OLD!?!?) he's really coming into his sweet little personality. I don't want him have to struggle to get back to that. I know it will save his life, I just don't want him to hurt. How dare he make me love him so much!?

Now that I'm done blabbering, here are some more pictures. :-)

I LOVE this picture! He's almost as big as Daddy...

Hey Hollywood! :-D

David loves swinging! We walked to the park the other day and he had a great time!

This picture cracks me up. He looks like the people in the movies who wear the fat suit. Check out those chins!

 

David was not very much help in the packing department - everything we put into a box had to come back out. However, when we started unpacking, he was all over it! Here he is helping me unpack the snacks to put in this cabinet.

I love being home in the mornings with David. I am beyond grateful that I can stay home and love on him all day. I love being home when Drew comes in for lunch.

 Bath time is so much fun!!

"Oh My!"

 Waiting for Daddy to get home from work.

 Since he's in bed, I guess I should stop typing and go do something productive...Or maybe just go to sleep. :-)

One Year!!!

So we understand how much we suck at this whole blogging thing, apparently I can have a new, New Years Resolution. There are lots of things that have happened but the biggest and best thing is that tomorrow (Saturday) David will turn 1!!!!!  It is beyond belief that a year has passed.  A year ago today Nicole and I were enjoying our last day together as just us, getting everything packed, checking things off the list, making sure the nursery was all set up and ready to go.  We knew we were going in the next morning and our lives were going to change forever, we just never knew how much it was going to change.  It is one of the few times I can say that I feel ignorance was bliss.  We were just excited, happy, and really giddy.  The next day had all those emotions but as we all know now they were traded for some different ones pretty soon.  It is still hard for us to think back on what was happening to David and our emotions a little over a year ago.  The emotions are still super raw and not that far from the surface, I'm not sure that will ever change but I will say that while they are close to the surface the emotions we feel and the emotions in our hearts is love, joy, and pride in our son.  So enough of the that, I know what many of you want....pics so here goes.

 He is so close to almost walking, he pulls up on everything and cruises around the living room all the time!

 David went to his first football game over Thanksgiving we went to the Butler/Trinity game.  Sure they lost but he had a good time people watching.

 Have you ever seen awesomeness riding a lion? Now you have!

 David seriously loves bath time!

 My 2 favorite people!! I love them both so much and watching their love for each other is the best thing ever!

This is David's MeMaw (Nicole's Grandma), She has been such an amazing support for all us and has loved David so much even though it took a while for formal introductions to be made.

So our fall has been pretty eventful, Nicole sadly had to go back to work which is no good.  I miss being able to come home for lunch and having my family here to talk to and spend some time with before I go back to work.  I miss them so much during the day, it has made us into big time homebodies because when she gets off from work and he gets home from daycare we just want to spend all the time we can with him.  So David has gone through some sickiness, he had a sinus infection, ear infection, and pink eye all at the same time, as he was getting over that he came down with some respiratory virus.  So that was a fun 3 weeks or so.  He ended up losing a couple of pounds through the whole ordeal which isn't good.  The NICU doctors are a little concerned about his height and weight.  For his age he is in the 3-10% so he is pretty small.  The best way to put it is he looks like a 9 month old for his size but the fact that he's been in the hospital so much and a heart that works extra hard and burns calories so fast we are beyond happy with how he is doing.

David also had to have a heart cath in the fall.  His left pulmonary artery had some stenosis (the artery was closing up really, really slowly) so they had to do an angioplasty to widen it up.  That went well and David's blood pressure was great in the artery and lung which is what we wanted.  Because of this issue with the stenosis the cardiologists and surgeons have started to talk about his next surgery being in the summer instead of next winter.  This caught us a little off guard, we weren't really ready to hear the s word again but it really is the best option.  This way they can do the hopefully last surgery and then a couple of months later to a more permanent fix with the artery with a stint and he should be good to go.  The whole idea of preparing for another surgery is scary and emotional but the thought of being done with them and just letting David grow and be as much of a kid as he can be is amazing to think about.

On the fun side of things David pulls up on everything including our pants, doors, chairs, toys, the crib, in other words anything he can.  He is cruising around the living room like a crazy man and we expect him to be walking anytime soon.  He loves baby food but is not a big fan of food food yet.  We think it is a texture thing more then anything else.  I'm sure if that doesn't happen soon we will be seeing an Occupational Therapist sometime in the next year. He jabbers and smiles   Heat almost anything (except Santa amazingly enough) and loves to play peek a boo(especially with church members while I am preaching).

As emotional and hard and scary this last year has been I always go back to the fact that no matter what David went through so much more and he is always happy and loving.  He is always excited to see us and love on us and play. He hasn't let anything slow him and his heart no matter how broken physically is the strongest thing I have ever seen.  His heart to exceed expectations, his heart and determination to live and to be who he is and his heart to love has made my heart grow and grow.  I call it my Grinch moment.  Through David my heart just continues to grow, where I didn't know how I could love more, he showed me.  Being his dad has grown my heart, grown my love not just for him but for others and helped to me to see what really matters in life.

Merry Christmas to all of you, from our family to yours.  Last year you held us up, helped us keep going, your love and prayers kept us going.  Thank you so much for that.  This year we will celebrate David and his year both good and bad.  While we love Kosair's and the doctors and nurses who saved David and helped him to thrive we are so excited to celebrate Christmas at home around our tree opening present with our little man.  Thank you all again.  We love all of you!

Updated Link for AHA Walk

Thanks to a very observant follower (♥ you, Nunner!), we realized that the link at the end of Thursday's AHA section of the blog didn't post. So, we're trying again. Hope it works!

Here is the fundraising section of today's blog:

This year’s Kentuckiana Heart Walk is on Saturday, September 24 @ 9AM.  We are creating a team of walkers and raising funds for the American Heart Association and we need your support!

If you’d like to join our team and walk with us (it’s a 3-mile walk starting @ the Waterfront and crossing the 2nd Street bridge):

1) Click on the link below and you will be taken to our team web page.

2) Click the “My Team Page” link.

3) Click the “Join our Team” link and follow the prompts to register.

You can also just let me know and I can add you to our team.

Everyone who joins the team and registers to walk will get an envelope to gather their donations. The money has to be turned in on the 22nd, so you have a little over a month to gather the funds.

Together, we can make a difference. You don’t have to join alone.  Please feel free to forward this (or let me know and I'll send it them an email) to anyone else who may want to raise funds and make a difference in our community. 

If you can’t walk, but still want to help raise funds for the AHA, check out the website below for donation information.

Thank you, in advance, for your support!

Let me know if you have any questions!

http://heartwalk.kintera.org/kentuckianaky/teamdavid

 

 

American Heart Association Heart Walk

Hi everyone!! I want to start this blog with a thank you. Thank you so much for your love, support, kind words, thoughts, and prayers for David and our family. You are all truly appreciated and we would not be doing as well as we are without you. ♥

Here is the fundraising section of today's blog:

This year’s Kentuckiana Heart Walk is on Saturday, September 24 @ 9AM.  We are creating a team of walkers and raising funds for the American Heart Association and we need your support!

If you’d like to join our team and walk with us (it’s a 3-mile walk starting @ the Waterfront and crossing the 2nd Street bridge):

1) Click on the link below and you will be taken to our team web page.

2) Click the “My Team Page” link.

3) Click the “Join our Team” link and follow the prompts to register.

You can also just let me know and I can add you to our team.

Everyone who joins the team and registers to walk will get an envelope to gather their donations. The money has to be turned in on the 22nd, so you have a little over a month to gather the funds.

Together, we can make a difference. You don’t have to join alone.  Please feel free to forward this (or let me know and I'll send it them an email) to anyone else who may want to raise funds and make a difference in our community. 

If you can’t walk, but still want to help raise funds for the AHA, check out the website below for donation information.

Thank you, in advance, for your support!

Let me know if you have any questions!

http://heartwalk.kintera.org/kentuckianaky/teamdavid

Now for the update portion!

David is doing great! Well, except for right now. It is 2 1/2 hours past bedtime and guess who's still up yelling?!? We've tried to let him cry (which we HATE doing). We've tried cuddling (which we LOVE doing). We've tried the swing (which he usually loves). He's just not having any of it tonight!

We went to see the surgeon last week. He said he didn't want to see us again until it was time for the next surgery! Such great news! We have an appointment with the pediatrician tomorrow to get his 6 month shots. David's gonna be very mad at us when we leave.

Our neonatal visit was last month. They went through their worksheet of the milestones a typical 6 month old should have hit / should be hitting. He rocked out most of them (grabbing toys with both hands, bringing EVERYTHING to his mouth, tracking you across the room, responding to a voice, etc). The ones he wasn't to hot on were the sitting up on his own (she said his muscles were working, they just weren't strong enough yet), the preparing to crawl (typical with ♥babies, and some babies never do), and the rolling over (just not there yet). The very next day - I kid you not - he sat up on his own, rolled from back to front, and pushed up on his arms while on his belly. Seriously, kid!?! He's working on 7 teeth now! He's got 3 on the bottom all the way through. One is working it's way up. And the 3 on the top that are starting to peek through. And we thought 2 teeth were painful!

Big news on the home-front: I got a job! It's data-entry at a employment agency. I'll be inputting the application and form information for the applicants into their database. It's a great opportunity. I'm still in the sad phase, though, of not being able to stay home with David. I've gotten so addicted to being able to love on him whenever I want. That part sucks. Monday's gonna be rough. But it's all for him (and insurance for Drew!) so I can do it. I just don't want to leave him. I guess it'll make our mornings and evenings that much more special. Hopefully it'll get easier as time goes by. Now we just need to find someone to watch him during the day. We've been looking around and Drew and I both agree that we would rather him go to someone's home (with other kiddos) than a daycare (nothing against them or the kiddos that go there!). I went to daycare from the time I was 6 weeks old through elementary school. And I have only fond memories of it. But it's not what we want for David. It's weird how the things that were great for us growing up don't measure up with what we envision for our son. As Drew just said: from a kid perspective, it was all fun and great. From a parent perspective, it's a little more stressful. Maybe I spoil him. Okay, okay. I spoil him rotten. But isn't that what I'm supposed to do? :-)

Picture time!

David loves bathtime! After the neonatal appointment, we turned his little tub around so he can sit up on his own. He's has a great time kicking and splashing and playing with his toys.

We started working on drinking from a sippy cup. So far, it's just water - which turned out to be a good thing! He's getting the sipping part down. Not so much the swallowing. He'll pull the water in his mouth and then just open his mouth, stick out his tongue and the whole lot rolls out onto his shirt. Silly boy!

He sure loves his Auntie JayJay! Check out those teeth!

I may have posted this before, but I just love this picture!

We got a little pop-up swimming pool for the back yard (or patio, as the case may be). This is David's first swimming experience. He was pretty cool with it. He just kind of sat there and took it all in. It wasn't as warm as his bath water, but I think he enjoyed it just the same.

VICTORY!! He's asleep! That's my cue to hit the hay. Thanks for reading my ramblings!

An Update And A Few Pics

It's a good thing blogging isn't our job. We'd have been fired long ago...

So, let's see what's happened since the last post:

David has returned! We finally have our son back. After the first surgery, it was hard b/c we saw our son laying there and could tell that he was in pain. But this recovery was SO much harder b/c we saw David. We have had 6 months of him coming into his personality and we knew he was hurting and we couldn't do much about it. Each day, though, he became more and more the David we knew. These are pictures from the hospital. The first one is right after surgery - he was in a lot of pain. We absolutely love the nurses @ Kosair. They stayed on top of him and gave him some wonderful meds when they saw him squirming. The next one is a picture from the day before we went home, I believe. You can tell he was finally starting to feel like himself again.

David has found his toes! He loves to hold and chew on them, and apparently they are the funniest things in the world. Speaking of chewing, he's working on his 3rd tooth on the bottom! None on the top yet, though.

When David was born, we found out that he also has a condition called ankyloglossia. Per wikipedia: Ankyloglossia, commonly known as tongue tie, is a congenital oral anomaly, which may decrease the mobility of the tongue tip. It is caused by an unusually short, thick lingual frenulum, a membrane connecting the underside of the tongue to the floor of the mouth.

David has a pretty mild case, though. The nutrition specialist at the hospital when he was born said he may have trouble learning to eat from a bottle and later on with a spoon. However, he hasn't shown any signs of that. We started baby food a few weeks ago. We began with squash. Then peas. We're now on to green beans. I can't shovel the food in there fast enough. This pic is the aftermath of the squash. He's becoming less and less messy with each day and each jar of food. He even wears clothes when he eats now! :-)

While out shopping with his Noni, Aunt Beth, and cousin Stella, we stopped in The Children's Place. I may need an allowance. I LOVE that store. We saw this onesie and it had to be purchased. He wore it to a wedding this past weekend. It. Is. Adorable.

Well, Drew just came in and asked when I was coming to bed. It's after midnight!! I got carried away with pictures and the blog and I lost track of time. Hopefully, David will sleep good the rest of the night. Lately, he's been power-napping through the day and not sleeping well at night. He hasn't quite gotten the I-can-go-back-to-sleep-on-my-own down yet. Soon I will be going to the bookstore to check out their selection of sleep-help books. If anyone has any recommendations, they would be greatly appreciated!

Oh! One more update. Last week we met with the neonatal team. They did a bunch of little tests to check his development. Because of his condition, and the surgeries/recoveries he's gone through, he's not quite where the typical child is on the development chart. But the docs are very pleased with his development so far. They say he's close to where he should be (given his heart issues). He started to roll over! He tends to get stuck on his arm when he tries to go from back to front, but that's getting better. The front-to-back roll is still kind of spastic, but at least they're happening! He's getting better at sitting on his own, too. He can do it, but his stomach muscles aren't quite strong enough to hold him up and keep him from tumping. He has never been a fan of "tummy time" (something pretty common for heart babies), so he hasn't really developed those muscles. We're trying TT a few times a day for as long as he'll stand it - sometimes 5-10 minutes, sometimes the amount of time it takes for you to lay him down). He is low on the growth chart, though (also common for heart babies). Our main goal before the next appointment is to get him up towards the 50th percentile. They changed the way we mix his formula to help him gain weight. Now he's getting 27 calories per ounce (as opposed to the 24 we were making. Formula as-is is 20 calories)! It's a bit thicker, and we go through formula like you would not believe! We're using a canister every 2 days!!

Drew came in again! Oops! I really am going now. And will try to write again in less than a month. :-D   Thanks for reading!