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!

The Ups and Downs of Recovery

So I had this real long and well explained post about what all has happened these last two weeks and all of a sudden it got lost.  So instead of that you will get a short post because that took a lot of effort.

After David's Norwood procedure we were constantly told that the recovery was like a roller coaster, lots of ups and downs, but we never really experienced that.  David just kept on going up and up.  That has not been the case this time around for our little man.  Whether it was his excessively fast heart rate (at times 277-290) or it was the really bad pain issues or just having to be woken up every couple of hours for meds David has been in a pretty foul mood for the last two weeks.  He hasn't slept the best in the last couple of weeks, the only time he does sleep good is either in our arms or in our bed which we love but even then it's still not the best sleep or normal sleep for him.

The hardest part is when he coughs, because his sternum isn't healed yet when he coughs his rib cage kind of separates a little bit and he is in extreme pain and is inconsolable.The only thing to really make that go away is time so we are excited when he is fully healed up.

On the plus side David ate rice cereal for the first time tonight! It was pretty liquified but he took to the spoon like it was going out of style and seemed to like it so that makes the day ending on a good note.  He did awesome until he coughed again!  Overall it has been hard to see our boy hurting and not recovering as quick as we thought but we know he is on the road and is doing better every day.  We go back to the cardiologist int he morning for his post op check up and hopefully we will get some more answers and help for everything that is going on.  Thank all of you for your thoughts prayers and support.  We saw today where you all have visited this page 15,000 times since he's been born.  That is mind boggling to us that he has that much love and support out there...Thank you, we love you.  We will leave you with a pic of David's first foray into cereal.

Living on a Prayer

For the first time since we have taken David home I am not sleeping in the same room with my wife and son. We are in a semi private room so there is only really room for one of us to sleep in there and Cole is sleeping in with him (let it be known that she offered the pull out chair to me and I declined which makes the next part even better because I have the top bunk!!! Yes fat boy Drew on the top bunk! So it's weird knowing my family is right down the hall and a couple of feet lower than me.

On to the important stuff David now has lived through 2 open heart surgeries!!! I mean seriously the kid has fought through more stuff that I'd give up on already in his life. He has had a good day since then, some mini downs (high temps and heart rates, having to be restrained because he's trying to pull his chest tubes) and some ups (going off the respirator, weaning dopamine sleeping and waking in cycles). What I am amazed by is his fight, determination and stubbornness. It really can't be explained.

David wad taken care of one of our favorite PICU nurses and she did a terrific job. It's great that after 6 months and so many other patients she could tell the nurses and dr's around her what David liked and didn't like why his body was reacting this way or that. It was amazing to watch.

David is still doing good as we enter the night. One thing we have noticed is how aware David is, he hears us and whenever he can move his body starts to lean and tilt in the direction of where we are because he knows and trusts our voices. There's something preachable there but I don't want to preach or try to wax eloquently on the day. Today was hell, it was scary and at the same time love never shined brighter. We can't thank you enough for your prayers and thoughts, please keep them coming David isn't out of the woods yet and he has a kidney cath later in the week. We love all of you!!!!


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Monday Monday gotta get down on Monday

So we are in the final countdown awaiting surgery for David on Monday. I'd love to say that I am at peace, that I know everything will be just fine, that I have the utmost faith that everything will work out splendidly....but that would be a lie. I AM SCARED! Not the uh oh something is going to jump out and make shrill like a little girl scared but rather the pit of my stomach up all night watching David breathe and crying scared. I think the big difference for me is the first surgery was risky and scary and we worried about our week old son not being there but now we worry about David, he has this personality all his own. Today during pre-op he was screaming bloody murder as the nurses were drawing blood but as soon as they were done and one of us were holding him he looked at the nurses and gave them the biggest grin. I cherish each of those smiles each moment we play super David, each moment he falls asleep in my arms, not because I'm worried it's the last time I'm going to do it (even though my pessimism pops up from time to time) but of the sense that he has a long road of recovery still to go and it will be a while until I get to do it again. Maybe these are my scared you know what less ramblings. What I do know is that the last 6 months of my life have been far and away the most amazing of my life, it has brought me closer to Nicole and God and our families. David has opened up a part of me I didn't know existed, in his young life he has already made me a better person.

Enough about me because in the end David is the one going through the surgery and the battle. Lately David has been a little constipated leading to some diarrhea (doesn't make sense to me either). He had a dosage change a little while ago and it may be catching up with him so we talked to one of the cardiologists who now has David on pedialyte and laxatives to move his stool (I know great reading) so now we are obsessed with checking him and making sure he is ok. We are eagerly waiting for Monday to get here and get done so we all can recover re group and make it back home to Bowling Green as soon as we can. Please pray for David, pray for his strength and for his patience as he wakes up and can't reach for everything like most 6 month olds. Pray for his doctors and surgeons and nurses. And if you have the time pray for Cole and myself and our families. Thank you all, I will try and post updates on my Facebook and twitter.

Drew





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Surgery Date and Operation Explanations

We found out that David's next surgery will be June 13. He should only be in the hospital for about a week. This surgery is called the Bidirectional Glenn. The last one is called the Fontan and should be done when David's about 2 years old.

This is the best explanation I've found for the next 2 surgeries.

Warning: it's pretty long...


The normal heart has four chambers. However, most of the pumping is done by the two lower chambers (the ventricles). Thus, instead of thinking about the heart as having four chambers, it is often easier to think of the heart as having two sides.

The left side of the heart pumps blood to the body, and the right side of the heart pumps blood to the lungs (fig. 1). The blood pumped by the left ventricle is should be full of oxygen. When the left ventricle pumps, a large blood vessel (the aorta) takes blood to all of the tissues of the body.

The body uses up the oxygen, and then the blood (now without its oxygen) returns to the right ventricle. The right ventricle pumps blood to the lungs so it can pick up more oxygen. The blood then returns to the left ventricle, so it can be once more pumped to the body. This cycle is continually repeating itself.

Single ventricle physiology is a medical phrase meant to include a variety of cardiac defects which have in common only one functioning ventricle. Sometimes the ventricle is a single left ventricle, sometimes it is a single right ventricle, sometimes it is difficult to tell. The lesions are grouped together because they are often treated the same, no matter which is the form of the underlying single ventricle.

Newborn stage: All children with single ventricle physiology have a similar pattern of blood flow as newborns. The blood is pumped by their only ventricle. After the blood is pumped, some of the blood will go to the lungs, and some will go to the body.

How this is arranged is different from baby to baby. Sometimes, there are two big arteries coming from the heart – one to the lungs and one to the body. Other times, there is only one vessel coming from the heart going to the body.

Blood can be supplied to the lungs connecting the blood vessel to the body with the blood vessel to the lungs. Still other times, the only blood vessel may be going to the lungs, with the extra blood vessel supplying blood to the body. No matter what the particular arrangement, all children have a Y shaped circulation where the blood flow comes from the heart to both the lungs and the body.

Problems with Newborn Circulation
Three problems exist in newborn circulation for children with single ventricles:

The children are blue: Ordinarily, the blood which the body receives is fully oxygenated. The blood pumped by the single ventricle is made up of blood which comes back from the body (unoxygenated) and lungs (oxygenated). Thus, what the heart pumps is only partially oxygenated blood. Thus, the body does not receive the normal amount of oxygen. (Blood which isn’t fully oxygenated has a bluish tinge to it, which is why children who have this condition are referred to as being blue).

Balance of blood between the body and the lungs: The balance of blood between the body and the lungs is critical. However, there may be too much blood going to the body and not enough to the lungs, too much blood going to the lungs and not enough to the body, or it may be just about right.

The Single Ventricle has to pump too much blood: The ventricle is designed to pump as much blood as the body or lungs needs for any given minute, hour or day. However, the ventricle is not designed to pump enough blood for both the body and lungs. The ventricle can adapt to that for a period of time but not forever. Thus, if a child is left in this circulation indefinitely, the ventricle is at risk for failing

Short-Term Solution
The short-term solution is to balance the amount of blood flow between the body and the lungs. Frequently, there is either too much blood going to the lungs. The blood flow to the lungs must then be reduced by constricting the artery to the lungs (Pulmonary Artery Banding).

In other babies, the amount of blood going to the lungs is insufficient. In this case, an artificial blood vessel must be inserted to increase the blood flow to the lungs (Blalock-Taussig Shunt). In the most complicated situation, this means re-doing all of the blood vessels as it leaves the heart to provide unobstructed blood flow between the ventricle and the body (this involves complicated open heart surgery, such as a Norwood procedure for Hypoplastic Left Heart Syndrome).

Long-Term Solution
The long-term solution is an operation called the Fontan procedure, in which the blood which returns from the body is directly routed to the lungs without passing through the heart. Thus, there is no ventricle pumping blood through the lungs as there normally is. However, it does address all three problems described above:

The children are pink: All of the blood which goes to the body came from the lungs, so it is full of oxygen.

No issues about balance between the lungs and the body: All of the blood which leaves the heart goes to the body, and then is to the lungs, and then back to the heart. There is no Y shape in the circulation for an imbalance to occur.

No extra work on the heart: The ventricle once again only pumps what the body needs every minute, every hour, and every day. Thus, the ventricle’s work has decreased from the newborn stage.

Bidirectional Glenn Procedure
Among doctors and nurses, a Fontan refers to the procedure where the two big veins draining unoxygenated blood back from the body (one draining the upper body and one draining the lower body) are connected directly to the lungs. In current medical practice, these are done at separate operations. The upper vein is connected first (usually at about 6 months of age), and the lower vein is connected second (2-5 years of age).

The name Fontan procedure refers to the operation where the lower vein is connected, and the repair is complete. The first operation where the upper vein is connected is called a bidirectional Glenn procedure (named after Dr. Glenn, who first performed the procedure). Perhaps the most difficult explanation in single ventricle physiology is why a Fontan procedure is actually done in two stages.

In a bidirectional Glenn procedure, the large vein which brings unoxygenated blood back from the upper body is connected directly to the lungs. This blood is oxygenated by the lungs, and then is returned to the heart.

The blood which goes to the lower body goes directly back to the heart itself, and then gets re-pumped to the body without going to the lungs. Thus, since unoxygenated blood from the lower body gets mixed in the heart (with the oxygenated blood from the upper body), and then is pumped to the body, the blood which goes to the body is not fully oxygenated. The usual oxygen saturation for a child with a bidirectional Glenn is around 80 percent. Average saturations for typical hearts is around 97%.

There are a number of reasons why the Fontan is staged; that is, the upper vein is connected to the lungs at one operation and the lower vein is connected at a different operation. There is no simple explanation for why this has worked out to be a safer and better strategy for children, rather than doing the entire Fontan (upper and lower veins) at the same operation.

The best explanation is that recovering from a Fontan can be very hard, and the heart has to be in the best shape possible in order for the Fontan to be successful. However, in the newborn stage, there is the volume overload because the heart has to pump to both the heart and the lungs. Thus, hearts are generally dilated and not in perfect shape.

A bidirectional Glenn is not as hard to recover from as the complete Fontan, and a child whose heart is not in perfect shape will have a safer surgery with a bidirectional Glenn then with a Fontan. However, unlike the newborn stage, a bidirectional Glenn does not require additional work by the heart. Thus, when the Fontan surgery is performed, the heart is entering the operation in better shape after a bi-directional Glenn that if the Fontan were performed with the newborn circulation.


I'm going to scan in the illustrations of David's heart and post them here to help explain.


Here's a pic of Drew, David, and I from Easter morning at church. I love those boys beyond belief!





Oh, HAPPY MOTHER'S DAY TO ALL THE WONDERFUL WOMEN OUT THERE!!

Cath Is Done - David did great!

They've finished the heart cath and are getting David ready for recovery. We're waiting for the doc to come and discuss the pictures. They said all went great. Thank you for all the prayers! We'll let you know when we have results.

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A Bit Nervous...

Tomorrow is David's heart cath. It's the next step on the way to the 2nd surgery (the bidirectional Glenn, for those playing at home). It's a standard procedure that they do to make sure everything still looks good and they can proceed as planned with the surgery.

But I'm still nervous. It's not open-heart, but it's still a surgery. He still has to be put under. He still has to be on a ventilator. I can't stop my brain from going straight to worst-case-scenario every time I look at him. I won't list them all, it's actually really depressing. I guess that's why they invented Xanax, right? :-)

We have to be @ Kosair @ 6:15 (EST) tomorrow. He should be out of surgery and in recovery about 10:30 or 11. The nurse said that if all goes well (he comes out of sedation and off the breathing tube with no problems, and keeps food down) we can hopefully be out of there by 5 or 6. We'll post updates as the day progresses and we get news.

We are calling on our "prayer warriors" for tomorrow. We can feel your good thoughts and appreciate each and every one.

1:30 AM is coming up quickly, so until tomorrow, good night!

Heartbroken for Khloe

I was totally ready to write a blog about David and his progress. But tonight my heart is full of hurt.

There is a family from Drew's home-church (Louisville 1st CP) that had a baby girl last week. Her name is Khloe Marie Kyle. Tonya and Larry (mom and dad) knew ahead of time that she would have some heart troubles. When she was born, they found out that she also had some lung issues. They planned to have a surgery to help her lungs and wait for a donor heart to become available for a transplant. However, after speaking with the doctors, Khloe's family decided not to do the surgery, and she was taken off life-support this afternoon. My heart is aching for this family. Even with all of David's issues, I still cannot even begin to fathom what the family is going through.

So tonight, instead of a rambling from me, all I have on my heart is this prayer:

Lord, I thank you and praise you for this day. But I come to you now with a heavy heart. Please bless sweet baby Khloe, Tonya, Larry, and the family. I ask for your grace and love to be upon them in their time of such great need. Be with them and comfort them. Wrap them in your arms and pour out your mercy on them. Help them to feel your presence and peace. It is in your holy and precious name I pray. Amen.

So we didn't get to post on St. Patrick's Day so here you go:





Things have been going amazingly well for David these last couple of weeks. It feels like everyday we wake up he is discovering something else or doing something new. It is a blast to watch the world through his eyes. As Nicole said last time David is part of a research study and so far that seems to be going pretty well. I think it helps us to see his progress in weight and his levels on a daily basis.

Something we have heard said quite a bit about David is that looking at him is that you can't tell by looking at him that anything is wrong with him and as long as he has clothes on you really can't. He's a little pale but he also has some ginger in him so that can be part of it too! :) even when his shirt is off his scar has healed super well. That is something we didn't expect to happen until his final surgery. So all in all David is really kicking butt after this first surgery.

With all that being said his next step is coming soon. Haw goes in for a heart cath on April 18 and to make sure David does need any side surgeries before his next surgery which will be in May. So there is some sadness and fear for what is to come but more often than not we look at our smiling, jabbering baby and it all fades away. That to me is the most amazing thing about David and probably all children. Whenever I have had a hard day or am a little bummed out I just pick him up and everything just disappears. I hope all of you get a chance to meet him one day. As always thanks for your love and prayers!





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To Know Him Is To Love Him

I know I said it wouldn't be so long between blogs. I didn't mean for it to be! Nothing really crazy has happened, so this blog is pretty much just an update. :-)

David is growing like a weed!! He is 3 months old, 12 pounds, and 23.5 inches long!







The mornings are my favorite time. He's wide awake and smiles and coos at us. If only he would sleep through the night. He is finally getting better at falling asleep in the crib instead of needing us to bounce and walk I'm around. Don't get me wrong, that still happens on occasion, but it's much less the norm. As I type now, I can hear him snoring and it is music to my ears.

This week David found his reflection. He lays on his activity mat and talks and smiles for at least 20 minutes. I love sitting and watching him. The first time, I made him hold the toys that hang off the mat. The next time, he reached for and grabbed them on his own. He's such a big boy!







Tomorrow we are heading to Louisville to meet with the research team at UofL. They're starting an electronic monitoring program as part of their Shunt Dependency Program. This program involves monitoring all aspects of David's health (weight, length, breathing, oxygen level, etc). By monitoring these, they're hoping to be able to tell if something is going wrong with his shunt before it gets bad. This is a brand new program and hopefully it will lead to it being used to diagnose other medical issues like asthma and diabetes. It's kinda neat being pioneers in new technology!

We're leaving super early tomorrow, so I should probably get some sleep.

I PROMISE it won't be as long to the next blog. We got the blogger app, so it's easier to do.

Night all!

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Get Back

Hello loyal followers! I can't believe it's been 2 weeks since the last blog! We've been trying to get into our routine - or as much of a routine you can have with a 6-week-old! I knew that life would change. I just honestly didn't know how much. Sometimes it's stressful, but we wouldn't trade even one second of it. Today's post is mostly pictures and descriptions of said pictures. I don't really have any deep thoughts tonight...

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So this is the picture of our angel on his first car ride. He did great! Slept the whole way. He snoozes every time he's in the car seat - as long as it's moving. As soon as you stop pushing the stroller or set the car seat down, it's an all-out squall fest.

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These are pictures of David's first feeding in our house. It was such a great feeling!

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Here is David sporting his "Team David" shirt. I think it may be a little big. ;-) I'll have to make him a onesie...

If you haven't gotten your Team David shirts yet, head on over to the FB page and get on it!

http://www.facebook.com/home.php?sk=group_112947572111627&ref=ts

You can also email Aleshia Akin (aleshia.akin500@gmail.com) if you're not on Facebook.

I'll post a pic of the 3 of us in our TD shirts shortly.

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 Life is CRAZY! It is so nice to be home. But at the same time, it's incredibly scary! At the hospital, if any alarms went off or David's stats went wonky, there was always a nurse right there to fix it. Now that we're home, it's all on us. That's a lot of pressure! My life is now full of What Ifs...What if I screw him up? What if something happens during the night and I sleep through it? What if his shunt fails? What if his stats drop and we can't get them to go back up? Sometimes it's so hard to shut out those questions, just relax, and enjoy being David's mom. But then I look at his sweet face, and I feel nothing but love and joy and peace.

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Drew and I relish the time we get to spend with David. It's amazing to hold him, feed him, and know that he is ours. We get to love on him all day long. And at the end of the day, no matter what has happened...he's still ours.

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Oh, please say a prayer for David's HLHS (Hypoplast Left Heart Syndrome) friend, Jonathan Young. He had his surgery on 1/3 and is having quite a bit of trouble recovering.

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I will try to update the blog more often than every 2 weeks! :-)

Have a great night, everyone!

Lovefool

Home life is slowly starting to get to a place of normality.  Of course by normality I mean that we are exhausted from waking up in the middle of the night to feed him or to check on him if his alarms go off.  So far David is still adjusting to being home which means that he goes through moments where breathing seems to be optional to him.  We have had to have a couple of talks about this and he seems to be listening. Last night he only had to be on oxygen for a couple of hours and the biggest reason to do this was as much for us as it was for him.

I think that I would have been a paranoid father no matter what but this whole thing has just taken me up another notch or two.  I am constantly looking at his breathing/color/poo/medicine schedule/stats/heart rate and whatever else we can look at to see if he is ok.  Too often I have to take a deep breath and remember to just enjoy him.  I guess trying to find that balance is parenting.

David really seems to enjoy laying on us or just looking at us and studying our faces and smiles.  He is starting to make more and more faces at us which is by far one of the more fun things to watch.  We are so happy he is a snuggely kid because we like to snuggle in with him.  This afternoon Nicole had to go to the Social Security office to work on some stuff for David and we decided it was best for him to stay home.  David and I settled in and after he
ate I laid David on me and we settled in for a movie where he stayed sleeping for the rest of the afternoon.  It was in that moment
when I was once again reminded how precious this gift of parenthood is.  The love I feel for David and Nicole and the family we have made is so beyond words.  What I know is that no matter what life David chooses to live my love for him will never stop or grow old.  Every day I wake up looking forward to the time where nothing in the house is going on and the three of us are on the couch together.  Walt Disney made Disney World/Land to be"The Happiest Place on Earth" and I love Disney World but it can not hold a candle to the 3 of us sitting together just loving each other.

Last but not least if you are on Facebook check out TEAM DAVID.  It was created by some amazing friends of ours who love David and us and wanted to create a community of people to support him and welcome him into the world. 

Thank you all once again, we love you.

D

Splish Splash I Was Taking a Bath!

 Today we gave David's his first bath!!  Needless to say he did not like it.  Even before the water started it was like he knew something was up.  We had a hot towel waiting for him as soon as he was done so it made things better, letting him cuddle into it and momma's arms made him very happy.

Over all the last couple of days have been pretty good.  He went to the pediatrician's office for his first check up.  The nurses were a little confused that he was a month old and just now getting his first doctor's visit.  At first they kind of looked at us skeptically so we had to explain the whole open heart surgery thing.  Then it was a big ah ha moment.

It really is amazing how different we feel now that we are home, we are loving the ability to do lay down with him and love on him and not have to be buzzed back to see him.  The hard part is our safety net has been taken out from us.  When he DeStats we have to look and see if it is really him or if it's the monitor not picking up, we have to know when and how to give him oxygen through his tank.  There are moments when I think too much about that and it makes me sad but when I look at him and spend the time just loving my son, all that other stuff is so worth it.  So here are some more pics for you all to see with him during bath time.

D

Take Me Home Tonight!

So if you haven't heard the news yet...



WE ARE HOME!!!!

We were told by the doctor's that recovery from the surgery would take 6-8 weeks before we had the chance to go home. Right now I am sitting on our couch looking at our son 3 weeks to the day from when he had open heart surgery. It is amazing to think how far he has come in this time and how strong he is. David did great on the way home he loves his car seat once it is moving, I mean seriously he is out in no time.

Going into the house for the first time was very surreal and emotional when we really thought about it. The last time Nicole was in the house we had a huge breakdown in David's room, we had just heard the news that David had heart issues and were on our way up to Louisville. We had to take David's car seat out of the car to make room for the dogs and as we took it inside we went to David's room and all of a sudden the thought that there was a possibility that David would never make it into his room or car seat. Yet yesterday we go to do just that and we go to rock in his chair and we were woken up in the middle of the night by his cries and all that other good stuff. In fact I am writing in a near trance and I couldn't love it more.

So on the going forward side we have to give him 5 different medicines a day and has to be on a machine that measures his oxygen levels as well as his pulse for a good portion of the day and we have to go back to the doctor here soon to start preparing for the next surgery but all of that is so far out of our mind because all we do is look at him and realize how amazingly lucky we are. We "fight" over who wakes up to feed him and care for him, leaving to go somewhere is usually done as quickly as possible as to not be away from him. It's just so amazing to be able to be nesting into our home.

Once again I would like to say thank you, thank you for your prayers and support, thank you for the love you have given to us and especially the love you have given to David who the majority of you have never met or seen in person. Hopefully going forward, as we move this horribly crappy state of weather and cold and flu season, more of you will get to meet this incredible and loving little dude that has lightened up our lives in such an amazing way. Also if you are a nurse of any kind let me just say thank you. Our NICU and PICU nurses and doctor's both have been so amazing to us and to David, literally they saved his life and allowed God to use them to minister and help in the healing of us. I have learned/am learning so much about myself as a father, husband, Christian, Pastor through this process and I can't wait to start living that out. So the sun shined brighter today, waking up at 5:30 was not a problem because love was very present then and as The Beatles say..."All You Need is Love"! Love all of you thank you again!

-D

Oh also blogger is being weird and only allowed the one pic but please check out some of the extra pics on facebook if we are friends.

A quick thanks

Hey all, I know that mist of you have heard our happy news, that David us now at home with us! I know most of you want a blog about our first day home but right now we are just in an amazingly happy place laying in our bed and looking at David. One will be written soon....but more than anything else I'd like to say thank you for your prayers, love, and support. You have lifted us up and kept us going and we can never thank you enough. Thanks again!



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Nicole's Ramblings for 1/10/2011

Again, I have been volunteered to write the blog. I am starting to understand why Drew wanted to do this in the first place. It's kind of therapeutic to put your feelings down on paper - or screen, as the case may be. Thank you, husband, for letting me share. You're the best!

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This is what we saw when we walked into the NICU today. Those eyes seem to stare right through us. It's amazing to watch him change every day - even throughout the day. Now that he can focus on things near his face, he sees us. When we talk, he searches for us. He will lay in our arms and just stare for as long as we will let him. It's awesome!

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Now that he's eating more, David's turning into such lazy kid.

Check out this yawn!

Good thing his parents are kinda lazy! We can't wait for the day that we can lay on our couch and stare at him lying next to us. Or take a nap on the bed, look over, and stare directly into his sweet, giant eyes. One of my favorite times of the day is right after eating when he starts to drift into his "milk coma". His eyes roll back, his lids flutter, and he smiles. I know it's just gas or a reflex or something, but it still melts my heart. I like to think that he's smiling at me. :-)

I love this. Another of my favorite things is watching Drew with David. Each day I am more and more amazed with the man I married 4 1/2 years ago. Words fail me at this point.

And now an update on David:

Yesterday, I actually got to nurse him! I can't tell you how happy this made me. After 3 weeks of watching my child lay in a bed, recover from surgery, and be attached by so many cords and wires, I finally felt like I was a mom able to provide for my son.

However, the doctors think he was having trouble digesting my milk - thus leading to the runny & bloody stool. Today we stopped giving him my milk and switched him to Similac. I would be lying if I said I wasn't sad about that. I really want to give him the best that I can, which I think is my milk. But if it hurts his little tummy, we'll do whatever we need to do to fix it. There is still a bit of blood (the docs think it should clear up in a day or two), but his stools were much more normal looking (you know, I never thought I'd be so excited to see baby poop!).

He went down 2 ounces in weight from yesterday. Our goal now is to get the scale going the other way and fatten him up. We're hoping the formula with more calories will do that. He looks so tiny with all the weight he's lost (about 1 pound so far, but on such a small body, that's a lot!). Please continue to pray for David's recovery, weight gain, and digestive system.

If you could also say a prayer for Drew and I, we would appreciate it. This is our life now, and we wouldn't trade him for the world. But sometimes it's hard. Sometimes we can't help but wonder what if...Then we look into that beautiful perfect face, and the what ifs dissapear. We are so in love with this little person we created that we can't really imagine it being any different. David is such a strong kid with a beautiful heart. We should know - we've seen it! We can't wait for him to grow up to see who he will become and what he will accomplish.

So, Drew and I were talking the other day after a comment was made along the lines of "Why would God let this happen?" I'm not sure why I feel the need to share my stance on this, but here it is:

God didn't "let" this happen. This isn't happening to punish us or David. It's not because we didn't pray enough or we didn't follow the commandments to the letter. At one point, we lived in a perfect world (I refer you to Genesis). Then Eve had to go and eat that darn fruit (women!). We have completely screwed up our society and turned it into something totally opposite of what God inteded for us. I don't think that God planned for or wanted David to have a broken heart. I think that's just something that's happened b/c of what we've done to the perfect world that God created. God knew that David would need people around him that would love and support him. He was put into our lives because God knows the strength we have - even though we usually don't. People keep telling us how strong and amazing we are. We don't see it that way. We're just trying to be the best parents we can be. We're doing what any parent would do for their child, aren't we? If there is something our boy needs, we will do everything we can to provide that for him. It's not being amazing, it's being a parent, and that's all we want to be.

I guess I should quit rambling now and go to sleep. Tomorrow is another day we get to spend staring at our beautiful baby boy. Have a great night everyone!