Tough times never last, tough people do

If you notice that I haven't been posting as much as a usually do it's because I just can't keep up with this little guy! Jonovan is full of energy and coming at us full force!! We go to Colorado Springs one week from today for another visit to the cardiologist to check on Jono's progress since the surgery. My guess and hopes are that they will tell us everything is going great. He is now mastering how to play catch and has gotten really good at throwing the ball. This is the first time he has learned something by repeating actions from Ramon and I. He also has started learning how to dance around for the Mickey Mouse song which, might I add, is just such a cute sight! Jonovan also learned how to drink from a straw yesterday so that means he's going to want to drink my water the whole time everytime that we go out to eat! Honestly right now, there's not a thing I can complain about! I'm enjoying all of the time that I get to spend with him now that I am home. We have so much fun!! I really am so very lucky and blessed to have the recovery going so smoothly.

Trying on Daddy's hard hat. He literally waited and posed for this picture with that smile on his face until we were able to turn the camera on. Soo funny!

Eating a pickle. Yum!

Trying out the new car Mommy & Daddy bought me!

Helping mommy do laundry

Eating some yummy ham. He's trying a lot of new solid foods now.

Our first week back home has been pretty busy but lots of fun. Jonovan is continuing to take off and he keeps getting stronger. He is drinking 6 ounce bottles now which is a HUGE accomplishment. I remember a few months back almost forcing him to eat so now when I see him drink such a big bottle in a hurry, it amazes me! He is also eating lots of table food. Anything with pasta or noodles is his favorite! He is crawling around faster than ever before and getting into all those fun things that he's not supposed to. The only time that our living room is clean now is after 9 p.m. when our lil monster is asleep. The rest of the day the floor is scattered with toys and his favorite blankie. Before the surgery we knew that Jonovan's heart condition was affecting him a lot but now that we have had the surgery done, we can notice a major difference. One difference we've noticed is that his skin color is different. His skin is still light but it's not as pale as it used to be. He just looks and acts like he has so much more life in him. I'm almost having a hard time keeping up with him. He is into everything everywhere!!! But i'm not complaining. Having our family go through all of this made us realize that it is the little things you don't even think of that you take for granted. We have come to appreciate all the times that we're chasing Jono around the house keeping him out of things. I am having such a blast staying home with him every day and having some good, quality Jonovan time!

Playing outside

Trying to keep his foot lifted because the grass in too pokey!

He discovered that the grass really isn't that bad!

And there he is using the wall to stand up. Such a big boy!

Notice how much more hair he has gotten.

I feel like the luckiest Mommy in the world when....

I get to wake up and see this sweet face everyday!!

We are sitting in our hotel room for what will hopefully be our last night in Denver. I didn't realize how homesick I was going to be until I had actually been here for a while. Jonovan is still doing great today. He's actually crawling all around the room, standing up on things, and getting into everything that is within his reach. He is not eating as much as he was the day we left the hospital, but we are assuming that it just takes some time for him to eat like a baby his age should. This morning we took him to the Denver Zoo for the very first time! Daddy bought Jono a toy elephant that is just about the same size that he is. He was awake for the first half our or so and enjoyed the bit of animals he got to see. I think we've got a future animal lover on our hands, just like Uncle/Nino Dennis and his Auntie Britny :) Jono's first post operation visit is tomorrow morning at 10:30 in Colorado Springs. He will see his regular cardiologist, Dr. Runciman, for this. As long as things are still looking good, and we are sure they are, we will get to go home tomorrow!! We had no idea that Jonovan was going to heal and recover from the surgery so fast. When I asked the hospital how long I should pack our bags for I was told that the absolute earliest we would be leaving was 3 weeks after the operation. Our lil' man never ceases to amaze us!

Monkeying around and laughing at the zoo!

Jonovan is ready to go home too!

Last night

This will be a quick post because we are getting ready to leave the hospital!!! yay! We will still be in Denver until Jonovan has one post operation visit but Jono is so excited to get his iv and all those funny gadgets taken off of him. Last night was so much fun we played with Jonovan for hours and he was laughing and smiling just like he used to. Feeding him was something that we always struggled with before but this is no longer and issue because Jonovan is eating 4 yes 4 ounces every HOUR! He's keeping us on our toes for sure. Thanks again for all the love thoughts and prayers! :)

Eating Eating Eating!!

What a flirt!

Playing with Mom and Dad

Life is not measured by the number of breaths we take but by the moments that take our breath away...

Sitting here again just watching little man sleep. He's doing great today. He's eating really good and managing to keep everything he eats down. The results from his chest x-ray show that he still has fluid in his lungs but it has went down some. The medication that he takes to help with this is called lasix. Today they will start giving him the lasix three times a day orally instead of through the iv which is great for him. He hates getting his iv meds because it burns a little. He will continue to take this medication even when we go home for a while. This morning he had an echocardiogram (heart ultrasound) and we'll know the results of that soon. He is one smart little guy! Every time he sees a nurse walk in the room he starts to cry because he knows there about to bug him with something different. When they are leaving and walking out the door he gives them a big smile and waves bye-bye. We've had a couple nurses that have come in saying that rumor was that Jonovan is one of the cutest babies ever and they just had to come check him out for themselves. Little man is already such a flirt!! The nutritionist here at the hospital just started him on a high calorie mix of formula that will hopefully help him gain some weight now that his heart is repaired. We talked to the Dr. this morning and he said that Jono is doing so great they may even discharge him from the hospital tomorrow! It's completely relieving to know he is going down a healthy path. We will have to stay in Denver still until he has at least one post operation visit. We feel so excited that each day just gets better and better for him and we couldn't have done it without the tons of support and love we get from family and friends! We say this a lot but it truly is amazing how quick he is recovering. It has only been four days since surgery and he's back to his ornery ol' self.

Daddy says he looks like a ninja with these hospital pants on.

Mommy says he looks like a doctor.

Sittin' on mama's lap watching cartoons

Riding down the hallway in one of the Children's Hospital wagons

They let him off the monitors for a while so we could hold and play with him

Sleeping in his crib

Sucking on my blankie always makes things better!

If God brought you to it, he will bring you through it.

After reading one of the previous posts I also wanted to add that while in surgery the surgeon only found the ventricular septal defect (hole on the bottom). He said he looked closely and was not able to find an atrial septal defect. It could be possible that he never had one or that it actually closed on his own. The VSD that was closed was a bit bigger thank a nickel. This may not seem to terribly huge but when you think about it in comparison with the size of his heart (which is the size of one of his fists), it was huge. He found that one of the venticals actually started growing tissue over the VSD with could have been very dangerous and damaged the ventricals if it had grown more. It was a great decision to have this surgery done and have the defect repaired. The VSD in Jonovan's heart was causing 2.5 times the amount of blood the heart pumps to go back to his lungs. If we had decided to wait or not do the surgery at all it would have caused permanent damage to his lungs. I feel very thankful that god put us in the hands of a fantastic surgeon that was able to go in and fix Jono's heart with out any major complications. Our prayers were answered and it's such a great reminder to never give up or lose faith! If God brought you to it, he will bring you through it!!

Bubble baths are always fun

Jono's day is going pretty good. We are still waiting on the doctor to get the results from his x-ray and lab work. As far as we know right now he is doing great on his blood count. The pint of blood that was donated by Ramon was enough during the surgery that we don't think he'll be needing anymore.This afternoon we gave him a nice bubble bath and he loved it! The nurses can't get over what a smiley little guy he is. He is a total flirt and he hollers at anyone he sees walking past our door. After the bath they allowed him to stay off the monitors for a while so we got to take him to look out the window and just sit down, play, and cuddle with him. He ate one jar of carrots and he's held it down so far which is great! We talked to a dietician today and she would like for Jonovan to be gaining atleast one ounce a day before we go home. After eating and a few iv medications it was time for him to be put back in his crib and hooked up to the monitors. He took a really nice long nap for one hour and a half then he woke up in a lot of pain. I called his nurse in and she gave him some medication to help with this. He drank one bottle of half pedialyte half formula, watched The Goofy Movie on the Disney Channel, and now he's back asleep looking just like a little angel!

Look out Broncos here I come!

 I got my broken heart fixed and now there's nothin holding me back!

Wet lil' puppy dog

Looking way too much like daddy fast asleep!

Something Indescribable

I'm sitting here in our room next to Jonovan's crib just watching him sleep. I swear I could do this for hours!! Just listening to him breath is the most relaxing sound that god could have ever given me. He seems to be doing so much better now. Right now the things that the doctor's are watching are his lungs, his heart rate, his pulse oxygen level, and his eating habbits. From looking at his x-ray yesterday they found that he does still have some pulmonary hypertension. This is fluid going to his lungs. He was started on a medication for that and we are now waiting for a new x-ray to see if they're working. Every once in a while his heart rate will jump up really high but it does manage to get back down to normal. Also, his oxygen levels sometimes take a dip down low from time to time. At about 4 this morning his nurse came in the room and decided he needed to be put back on oxygen for a while. About 1 hour ago they took the mask away and he is doing well without it right now. As far as his eating goes, he still can't seem to hold anything down. Everytime we give him formula he vomits it all back up. We're now doing a mixture of 1/2 pedialyte 1/2 formula and he has kept 5 ounces of that down today. Aside from these complications he is being a total rockstar :) We look at him and just think how amazing it is that he had open heart surgery only 3 days ago! He's such a little champ! (that's what daddy calls him) 

Sleeping with one of his best pals Mickey Mouse

Just to see you smile :)

There is a song that Ramon and I sing to Jonovan every morning. Good morning to you! Good morning to you! You are my sweet baby...Oh how I love you!!!  It never fails to make him smile even if he's still half asleep. Yesterday it seemed like there was nothing we could do to make Jonovan smile. This morning we got our very first smile from him since the operation! I have to say it was a GREAT feeling. We can see that we are slowly but surely getting our little boy back to normal. Today was a good day. Jonovan was transferred from cardiac intensive care to the 9th floor which is all cardiac children. He still has some spurts where he is in a lot of pain but his nurses are doing a pretty good job at keepin it controlled. The results from his x-ray this morning showed that he does have some fluid in his lungs so he is now on a new medication for this as well. He still has been vomiting since yesterday. We were able to give him his first sponge bath this morning and after this he was sound asleep for a nice long nap. Later in the afternoon we gave him another sponge bath because he vomited again and learned how to properly care for his incision. We dressed him in a cute little blue shirt that buttons up on the side and some little white hospital pants. This afternoon his nurse noticed that his heart rate starting going up, she informed the doctor, and they are now keeping a close eye on this. Jono has had many visitors which included family and friends of ours that live in Denver & also family and friends that traveled here to see him bringing many many gifts. He sure is one loved little guy. We still have many people calling & texting to check in on him and we appreciate every bit of it! Thank you for helping us stay strong & keep our lil sweet cheeks strong too! Now here's some pictures. It's amazing that he looks so good only two days after having surgery.

Playing with some hospital toys

New toy from Grandma Sadie & Grandpa Mike

(Notice no more oxygen!)

So serious!

And we caught one of those famous smiles on a picture!

a few pics

Here are a few pics I forgot to post in the last one.

Here is Jonovan after getting some of the tubes taken out. So relaxed.

Here is a picture of him swinging right now as I type this. Isn't he cute :)

We'll keep you in our arms forever

This afternoon I got to hold Jonovan for the first time since I had to hand him off to the anesthesiologist. I was a little scared because he was still connected to many tubes and machines and I just didn't want to tug on them the wrong way. Holding him and having him close to me again was probably one of the best feelings I have felt within the past few days. He took a really good, long nap while I held him and once he woke up the doctor decided that he was ready to get a few more tubes taken off. Now they removed his drainage tube, one of his pacer wires, and the iv that is in his arm. This all allowed him to move around a little easier. For the longest time after these were removed, he stayed in his crib very groggy but just wiggling and kicking those little feet around. I think part of what is hard about this for us is that we haven't got to see our lil guy smile, talk, crawl, stand, or even sit up like he usually does. We know that he is such a fighter though and within the next few days he'll be getting back to his same ol' adorable self!! Later on in the afternoon we were able to walk around with him and daddy got the chance to hold him for his first time since the surgery. Looking at those two standing there together makes me feel so blessed and lucky to have them both in my life.

Mommy's first time holding Jono after surgery

Daddy's first time holding Jonovan after surgery

First Time Seeing Jonovan

Yesterday evening we were finally given permission to go in and see Jonovan for the first time after surgery. He looked so peaceful and like a total rockstar for just coming out of open heart surgery! He had a breathing tube in, a tube to empty out his stomach, another tube coming out of his neck (this makes it easier for them to do labs), an iv in his arm, another one in his foot, a tube to drain from his chest, a catheter, and pace maker wires coming out of his chest in case they are needed. At 6:45, both morning and night, the hospital does their shift change. During this time all parents and visitors are required to leave the bedside for 1 hour. We came back in to see Jonovan close to 8:00 p.m. and he was having a really hard time. By this time they did have him off of his breathing tube but he was having an extremely hard time coming off the anesthesia and was in a lot of pain. They had already given him as much pain medication they could for a baby his age and size. After a while of screaming, crying, and fighting they decided to give Jonovan some medication that would hopefully help relax him. In the mean time of this fighting he managed to get the iv in his foot kinked inside his vein. How many nurses does it take to hold a 13 pound 9 month old baby down? Well, our strong little guy put up so much of a fight it took 4 plus help from mommy and daddy too! After 3 more hours of screaming and fighting they decided to try another medication that would hopefully help him get some rest. 1 hour later it finally did the trick and little man was falling asleep. Because of all the fighting, crying, and all the medication he was now running a high fever and they had him on another machine to monitor his breathing even closer. Having to hold him down and watch him cry not being able to do anything to help him is probably one of the hardest things as parents that we've had to go through! Around 2:30 a.m. the nurses came to Jono's bed because the rhythm of his heart became different from what it had been. This is something his surgeon explained to us may happen after surgery. If they are not able to get it back they would have to use the pace maker wires. Luckily, after putting ice on his head it was able to get his heart rhythm back to normal. His nurse said it was the first time she had ever seen putting ice on the head work without having to give him medicine. At 3:30 a.m. we were finally able to let Jonovan have 2 ounces of formula and another ounce at 4:30. It had been close to 29 hours that he went without eating and he guzzle down that bottle faster than you can blink. After all of this Jonovan went back to sleep and just had some minor fussing throughout the rest of the night. We brought a little music box that his Nana bought him when he was a newborn and that seems to really help him relax. Right now we are just sitting and watching him peacefully sleep and counting down the minutes until we can hold him for the first time! I'm keeping this blog as a journal that he will be able to see when he gets older so I also want to make a note that the blanket he has had with him through this is the very same blankie that he had the day he was born.
Here are some pictures of our little soldier :)

Doesn't he look SO good for being in surgery 1 hour prior to this picture? He makes us proud when he doesn't even know it!

Here he is this morning. No more breathing tube! Staying strong and looking peaceful.

Still waiting

Jonovan's nurse came into the waiting room a little after 3:00 p.m. to let us know that they were done with the surgery and that they would soon be closing him back up and taking him off the bypass machine. As far as we know right now, everything is going good. We are still waiting to meet with the surgeon and we are expecting to be able to see Jono around 5:30 p.m. It is so relieving to know that he has done great so far and he is staying stronger than ever for us.

Pre-Operation

This is the day of our baby boy's open heart surgery. Jonovan will be put on a heart and lung machine while they close his ventricular septal defect and his atrial septal defect. This machine helps his heart get oxygen while they do the operation. The anesthesiologist came to pick up Jonovan at 12:30 p.m. Me, Ramon, Grandma Sadie & Grandpa Mike, Grandma Alicia, Great-Grandma Bennie, Aunt Britny, and Cousin Cecilia were all here to give him lots off love and send him off to sweet dreams. I gave him the biggest hug and kiss I ever have and told the nurse to please take care of my sweetheart! Everyone was in tears as we watched him leave but we all know that everything will be just fine because he is the strongest lil man we have ever known! Shortly after his nurse came out to let us know that he went to sleep well and they would soon be hooking him up to his iv and all the other wiring required. At 1:45 p.m. his nurse Esther came out to let us know that he was doing great and they just started the operation. Until we hear another update we'll be thinking about him and saying lots of prayers.

I also want to mention that although not everyone was able to be here with him in person there were SO many people keeping him in their thoughts and prayers! Thank you all! Jonovan is one LOVED little man. Not just by us, but by everyone around us!

Here is a picture of Jonovan in his hospital gown before surgery.