David came into our lives on December 17, 2010. Soon afterwards we found out that David was born with a congenital heart defect known as Hypo-plastic Left Heart Syndrome. This is our place to vent, update, and share the love we have for our son.
I know I know it's been too long.We promised we'd post more. We'll do better next time. So often when we talk about the blog and wanting to post on it again we say oh yeah lets do that and then we forget and go on. When we first started the blog the point of it was to post pictures everyday for our family who didn't live close could see him and watch him grow instead of only every month. Of course the blog quickly changed to a place for us to vent and give updates on his health and going through the surgeries and it really is an amazing thing for us to come back and read the posts and your comments. It is a beautiful piece of our history that I can't wait to share with David as he gets older and say, "These people loved you before they knew you and prayed for you more than we will ever know." So with all that being said the blog may change now that Hayes Baby #2 is on the way and David is where he is. Only time will tell I guess.
The real reason I wanted to write today is something Nicole and I were talking about last night. We realized that David was 20 months old when he had his last surgery. In the first 20 months of his life he had 6 open heart surgeries. This month marks the 21st month since the last one. We were amazed to think he has been on this side of the surgeries for a longer time than it took to get them done. I know it may not seem like a big deal to everyone but for us it just hit us. The first section of David's life was filled with procedures, heart caths, hospital stays, lots of medicine, weighing him every day, calling in to the doctor's to tell them everything that was going on, MRSA, collapsed lungs, no eating, and no pee. It really did feel like those first 20 months took forever. Maybe it was being a new parent, or the months of being in the same room (seriously for with the exception of his first stay in the Critical Care Unit we stayed in the same room in the same spot. I think we need our own Historical Marker there) but it's all we knew and all we thought we were ever going to know.
With all that being said we now have an active, healthy, funny, sweet, and adorable 3 year old who keeps us busy and loves to snuggle. He doesn't fully understand what happened to him. He calls his scar his zipper that the doctors use. He is still worried of hospitals and doctors. When we go somewhere he often says, "Momma I no go to doctor." Yet for the most part his life is spent laughing and playing with his toys, dogs, and parents or anyone who will play with him. He loves, loves, loves Toy Story and Disney's Frozen and likes to sing and play and uses his imagination so well already.
We really do feel blessed and lucky to be in the place that we are in with David. We also know it's not the end. In the back of our minds somewhere we know that his heart issues could spring up at anytime. Even in the months since his surgery we've had lots of topical MRSA issues, a cath, and one hospital stay for a really bad, sudden case of croup that got his O2 levels down pretty low. I think maybe something we learned and try to take advantage of is to just live in the moment and to love with everything we have. Thanks so much for being on this ride with us through the years and who knows what this space will be used for but we will try to be more active with it to come.
Well, it is the new year. I may be a bit late - only a month or so. My bad. And my "new" goal is actually close to the original one for this post. I'm going to try to post more pictures and blog more often than every 6 months. I know I say that pretty much every post, but I really mean it. I'm working hard to get our house and my life in order. I want to get the house totally organized and get myself on a schedule (and skinny! But those will be covered in another blog I'm starting...).
Ok. To the update!
Let's see...my last post was...um...August 24. Sheesh. Well, at that time, we had found out that the infection around David's heart was MRSA. Scary stuff. They gave him some heavy-duty meds and started to knock it out.
It had been such a rough road that when he laughed for the first time in a month, we couldn't help but cry. The stress just kind of melted away.
By the end of August, David had his chest tubes out, was doing physical therapy to get his muscles working again, and was sitting up on his own. They wanted to keep us until he was up and walking. The issue was that he didn't want to get up and walk.
September 1st, he stood up. Apparently he was ready to go home.
So, on Sept 3, we were outta there!
We left Kosair but stayed in Louisville for the rest of the week since we had to meet with Dr Austin (the surgeon) and get his stitches out. We finally got home on Sept 7th - over a month after we left the house before surgery. We were expecting to only be in the hospital 7-10 days. I guess that's what we get for assuming David would follow the rules. :-)
Before we left, David showed us he was feeling better and getting back into his sneakiness. When Drew looked away, David went for the laptop!
A few days later, he was back to his normal self. He sure does love those shades (he even wears them during church!)!
September was full of recuperating and getting back into our routine. We had our 6-week checkup with Dr. Austin. He said "Well, everything looks great - send me pictures". Meaning we won't be going back to see him. It was weirdly sad and exciting at the same time. Exciting that we were at a place where the surgeon felt comfortable enough to let us go. But sad at the close of that chapter. He also gave us the all-clear to stop the antibiotics that were fighting the MRSA. There was no sign of anything left! WOOHOO!
October was pretty calm and relaxing. For our Halloween trunk-or-treat at church, Peanut was a monkey. The cutest dang monkey I've ever seen - if I do say so myself. :-)
After that we went to the Zoo Boo @ the Louisville Zoo with Drew's family. Thanks to Jamie, he was a "Doctor In Training". With a stethoscope and everything!
Let's see...November...Not a lot of crazy things happened. Well, maybe one. Anyone who knows David or has been reading this blog knows that after David's 2nd surgery (June 2011), he wouldn't eat. No baby food, no table food, nothing. He existed on PediaSure alone. So we've been a bit worried about his development on the feeding side. He's been growing pretty well, so we just wanted to be sure he wasn't missing nutrition he needed. We started meeting with TEIS - Tennessee Early Intervention Service. It's an early development program that helps kids who may be behind in their development for whatever reason get caught back up to the "norm". We have a speech/feeding therapist and a developmental therapist that come to the house every week. Cassie (speech and feeding) tried and tried to get him to eat. We tried to let him play with his food hoping he would want to test it out by eating it. Yeah. Not so much. However, one Friday at the end of November we were waiting for Cassie to come for our therapy. I decided to try again to get him to eat something. He ate a jar of baby food (4 oz) and then 2 of the little food pouches (4 oz each)! Then, he voluntarily ate cheerios! Who the heck was this kid? He's kept to that path - we now eat a 6 oz jar of food with oatmeal in the morning, and another jar at night. We've also substituted some whole milk for one of the PediaSures. And he likes LOVES dip! Especially cheese. So much so that when we drive by a Taco Bell - not go in, mind you, just drive by - David yells "CHEEEEESE"! Does he like cheese that much, or do we go to Taco Bell too often?
December brought his 2nd birthday and Sesame Street party. It was so much fun! And we are so blessed to have wonderful people in our lives who love David. He had such a great time and continues to play with all of his toys.
My mom found a little suit on clearance and had to get it for David. I'm glad she did. Check out this cutie!
Who needs to go out to a drive-in when you've got a car and Sesame Street at home?
So, that brings us to January. Since January 1, David has been paci-free! We took it away from naps in December, but January brought the end of nights with paci. He did amazingly well. He asked for it the first night, but we just said "No more paci - you're a big boy now". He shrugged and said "ok" - which is my new favorite thing he does. David also grew enough that we felt comfortable and turned his car seat around! He loves to be able to see where we're going. And he points out all the cars we pass on the road. My least favorite phrase has become his favorite in the car: "What's That?" When I start to get frustrated with it, he melts my heart and says "hi momma!" and gives me this grin:
I think he's gonna be a musician. Keyboard? Guitar? He doesn't care one bit.
Here's to a year of moving forward, good doctor reports, and big growth in our sweet little Peanut.
Ok. So today we opened up our Facebook status for questions related to David. I hope this answers them. If not, just ask! The fluid they found around David's heart was actually a large blood clot. Within this clot, they found bacteria which turned out to be MRSA (methicillin-resistant Staphylococcus Aureus - or a staph infection that is resistant to the basic antibiotics). I know that there are many horror stories about this infection - it's not called a superbug for nothing. However, we are not too worried b/c when they first thought an infection might be present, they pulled out the big guns. They gave him an antibiotic (vancomycin) that is so strong it's actually semi-toxic. It's hard on your kidneys, which was our worry since we've had trouble with them this go around. There are different strains of MRSA that are sensitive to different treatments. It takes a few days for the cultures to come back and tell us which strain he has. Luckily, it's a strain that can be treated with a drug called clindamycin. This is much less toxic to his little body. It also comes in a form that he can take by mouth. Meaning we don't need to stay in the hospital until treatment is done (approx 4-8 weeks). Once this treatment is done, David shouldn't have to be on a lifetime regieme of meds for MRSA.
Because of the infectious nature of MRSA, we are asking that no visitors come to the hospital at this time. We're in a quarantine of sorts with gowns and gloves and such. We don't want to put anyone else at risk of contracting MRSA. As of right now, we're not sure how long we'll be here. He's improving, but apparently he's not quite ready to leave. I guess he wanted to see his weekend nurses again! We have to wean him off the oxygen and keep his heart rate and blood pressure under control. It's a dance we're doing with meds and David's stats. People have asked what we need. Honestly, we have been so blessed already! We don't really need anything. We've received gift baskets of food and things that we're sharing with the staff and still have 3 giant bags full! What we really need are your prayers. I know we ask for them a lot, but they are a huge reason we are still able to function! So, keep 'em coming! For those who like to pray for specifics, we could use healing in his incisions, healing from MRSA, continued improvement in his lungs, excess fluid to leave his body, and his physical abilities to return (sitting up, walking, etc) after being in a bed for 16 days. As far as Drew and I are concerned, we're doing okay. We're tired and ready to be home. We're blessed to have the best, sweetest, strongest, most courageous little boy ever. We rest when we can and lean on each other when we need to. We're lucky that Drew's mom has the space and compassion to keep our dogs at her house and take care of them while we're up here. Our families have been bringing us meals so we don't have to eat at McDonalds 3x/day! And our awesome friend, Jamie, is watching our house, getting our mail, paying our bills, and eating our cookies! :-) David has started to get back to his normal self. We watched most of Sesame Street this morning. He's watched Elmo and P&F on Netflix & YouTube. We even read part of a book (Grover is the monster at the end of the book, btw). Well, I think that covers it. If there's something I missed, I'll have to answer tomorrow. Right now, D's asleep. So we will be too!
Today starts a brand new week. One that will hopefully be more positive than last week. Since the last post, so much has happened.
On Thursday, David was extubated. He was doing okay and he downed pedialyte, so on Friday we decided it was time to try Pediasure. He ate about 4 ounces and got a little agitated. We thought he was still hungry, so we gave him more. All of a sudden, his numbers dropped out. It turns out one of his lungs had collapsed and he aspirated some Pediasure. They had to reintubate him to be sure he was getting the oxygen he needed. It was scary just sitting back watching the docs and nurses work on him. But knowing how great everyone at Kosair is made me feel a little better. After a small moment of worry - okay a major breakdown - we gathered ourselves and waited to hear what the docs would say.
The new plan was to "not rock the boat" and to let him rest and heal up a bit. The last 3 days have been good. He's slept a lot, his lungs have much less fluid in them, and he's breathing more on his own. He's gained 3 pounds since we got here. So much fluid! But, we asked for prayers for pee, and they have been answered. He's been negative (more fluid coming out than going in) for the past couple days! That's what we want to see! However, they are a little worried about his kidneys - they aren't working as well as they'd like. Now that his heart is working like it should, they should also improve. The nephrologist (kidney doctor) says that right now the receptors in his kidneys are sad. For some reason, I love that description. So now we want happy kidneys that produce good pee! :-)
The surgeon said he likes how his heart looks. It's working like it should and his numbers are looking great!
The plan for today is to let him continue to rest. They've started him back on Pediasure via a feeding tube. They're reducing some meds and want to extubate (for good) tomorrow at the latest!
We would like for everyone to know how much we appreciate your good thoughts, prayers, and support for us. We wouldn't have made it through without you!
One of the joys of open heart surgery in babies, and I guess for anyone but just knowing our context, is that no one follows an exact script. They have an expected road but every baby tends to walk their own unique way. As always David is doing things on his terms in his way and he has decided that it is going to be a little bit slower than people would like including mom and dad and his family!
The doctors really want to get him extubated (I'm sure I spelled this wrong but off the breathing machine is what I mean) as quickly as possible, in fact many times they do that before they leave the operating room. David threw them a curveball with some wacky numbers and wanted to wait until this morning. Well this morning he decided to throw them another fun number or two so they are now waiting until this afternoon as they try to balance his heart rate, body temperature, blood pressure, air flow, pulse ox, and cvp numbers. The fun part is the medicines usually have a good effect on one and a negative on another so they have been playing the balancing game really well. It is absolutely amazing to see doctors and nurses at work, the people at Kosair's and I'm sure many other places do such a good job communicating to each other as well as to us what's going on.
David is also slowly starting to wake up so they are having to manage pain as much as they can as well as his anger at the breathing tube. In fact as I type this Nicole had to jump up to keep him from trying to pull it our himself. We had to remind him that's what we are paying the nice doctor so much money to do (or at least our insurance is)
So we are kind of in a holding pattern right now, David has 3 chest tubes, a g tube that is draining stuff off his stomach. He's on a water pad that heats up or cools down according to what his body is doing. He has 13 different pumps to give him medicine and a whole lot of lines in case they have to push anything else. Hopefully by the end of the day we will have him awake a little bit more to breathe on his own and to cough and start getting that going as well as starting to get some of the fluid that they have pumped into him off of him.
Thank you all for your prayers and concerns. We have felt all the love and we believe David has as well. The next couple of days will be a little bit slower then yesterday was but that is a good thing. Just keep praying that he slowly gets better and we rest up some. Thanks and God Bless
So tomorrow is David's surgery. They take him back at noon and should start a little after 1. We would very much appreciate your thoughts and prayers for the doctors, nurses, and all those taking care of David tomorrow. Also for peace of mind for us as we sit and wait for them to come out and tell us everything is fine. The docs expect him to be in the hospital from 4-7 days. We're hoping for the shorter end of that range. :-)
The last few days have been wonderful just spending as much time with him as we can while he's happy. It'll be a little while before he gets totally back to his normal, sweet, happy self.
We want to thank everyone for their love, thoughts, and prayers as we've prepared for this (hopefully) last surgery. We could not have made it without your support!
I know this is short, but I'm going to try to relax and get some sleep before we hit the ground running tomorrow. Stay tuned for an update after surgery. If you'd like the play-by-play, be sure to check our facebook and twitter accounts.
A few weeks ago, David had a heart cath. Everything went pretty well, They said his pressures were good and low (necessary for the next surgery). Once he got back in his room (he was on 6 hours of bed rest - yeah right! He's 18 months old!), his incision site started bleeding. Not just a little, either. I don't usually flip out with David. During the last 2 surgeries, I saw blood and his heart, they stuck him with a bazillion needles, and it wasn't a thing. However, when they pressed on the site and it bled worse, I got a little woozy. It was awful. They always tell you that if the site bleeds to press on it for 10 minutes. I always thought, "yeah i can do that". I was NOT prepared for the amount of pressure needed, or the pain it would cause David, or the bruise that would result. It's finally almost gone, only 2 1/2 weeks later.
Speaking of preparing for surgery...I just got off the phone with the surgery group. David's surgery (the Fontan, for all those playing at home) is scheduled for Monday, August 6th. We've been preparing for this for the past 18 months. But now that we have an actual date - not just "sometime this summer" - it's real. And scary. As soon as the date was set, all we wanted to do was hug David and cry. Maybe it's too early to be stressing, but it's what we do. :-)
Here is a picture that shows a before and after drawing of the Fontan. They're pretty much going to graft a new section of his Inferior Vena Cava to bypass his heart and connect to his Pulminary Artery. This will send the un-oxygenated blood from his lower body to his lungs to get oxygenated, then out to his limbs.
David loved playing in the playroom while we waited for his heart cath!
Right before they took him back, they gave him some "happy juice" to help with any separation anxiety. About 5 minutes later, his head just got too heavy for him to hold up. He was super loopy and it was hilarious.
The next week, we went to pick up Drew and some kiddos from church camp. While we were there, our amazing friend, Lisa, took some awesome pictures of David. We're hoping to get down to Memphis before surgery to get some family pictures made. Here are a few of the ones she took.
Man I love this kid!
This is David's new favorite place to sit and watch Sesame Street. I remember when he was barely big enough to see over that ottoman!
David loves blowing kisses and waving bye! Well, he kisses his hand (and by kiss, I mean open-mouth licks it - those are awesome on your cheek, too. :-P). We haven't mastered the "blow" part yet...
When my mom and sister came to visit, we painted the living room and dining room. It's an awesome dark tan. We were wiping down the walls before painting and David wanted to help. :-)
We got one of those little plastic pools for the backyard. David loves to splash around! He can't leave the house without his hat, though. He likes to wear it backwards like his dad.
Well, it's naptime for David. And since Ms Sandra is coming today, that means cleaning time for mom!
