Home Sweet Home

We are HOME! 30 long days and we have finally made it home with Evan. Evan did great with his feeds thru the g-tube yesterday and passed his 90 minute car seat test so this morning we were cleared to go! The discharge paperwork was signed at 9:50, but since no one was on the same page this morning, we didn't get to leave until about 2pm! I got to take off all the remaining wires from Evan's chest, it was so great to "free" him! He still has to be on the pulse ox machine 24/7 but thankfully the cord is very long so it's not too bad. There wasn't any traffic so we made it home in about an hour.

I realized today we have unknowingly been adapting to this new "lifestyle". Feeding Evan thru his g-tube feels so normal. It doesn't bother me to see the scar down his chest. Charting every feed and medication is now "normal". My mom brought Elli back shortly after we got home, and I realized how out of touch I am with how other people will feel about Evan. This is all so NORMAL for us now, but seeing a baby with a tube coming out of his stomach and a scar that cuts his chest in half is definitely NOT normal. But this is our life now..

Scott and I definitely need to get into a routine now that we are home. Evan has to be fed an exact amount every 3 hours, and needs meds at 9am and 9pm. I've already measured out all of the medication for the next week; I had to fill 39 syringes and separate them into 7 bags labeled for the days of the week. Since hypoplasts generally have a hard time gaining weight, we have to make Evan's milk high calorie. Normal breastmilk is 20 calories, and Evan's is fortified to 26cals per ounce. I just have to mix in a little bit of formula. Tomorrow I am going to try making 24 hours worth of feeds in the morning and see how that works out for the day... Also since we are participating in the hospital's home monitoring program, I have to weigh Evan every day and record how much weight he gained, record his feeds, record his morning and evening sats, and all other concerns. It's a pain, but I'm sure we will get the hang of things!

=) It is almost midnight and it's new years so I am out of time, but I will update more this weekend!

Thank you SO MUCH to everyone who has been praying for my family!! <3

A very hungry baby..

.. is what I have right now. Evan had to stop being fed at midnight last night, and can't eat again until tomorrow morning. His g-tube surgery went well, it only took about 25 minutes and then he was wheeled back up to his room. The DR said it went great, his belly was a little inflamed so they are switching him from Zantac to Prevacid, which ironically is what helps my belly best too. When Evan got to his room, he was mad, real mad. I have never seen a baby suck a pacifier that hard lol It completely broke my heart. He was crying so hard and turning very dark purple. Just a FYI, shunt dependent babies like Evan are NOT supposed to be overstimulated and cry like he was. I was so scared, and there was absolutely nothing we could do to calm him down. The nurse was no where to be found so we had to have another nurse go get her. They gave Evan a dose of some medication that was supposed to calm him down and "take the edge off" but that didn't work. I tried cuddling him, rocking him, bouncing, nothing worked. She finally went and found the Dr and asked to give him tylenol. That didn't really help either. I ended up just holding him and played some music for him until he calmed down and went to sleep. It's miserable to have him stare at me like he's wondering why I'm not filling his belly. It's going to be a long night.. lol

A couple hours after the surgery, the nurse practioner came in and said she was going to go ahead and take out the LA line in his chest and his pacing wires since there has to be a surgeon in the hospital when they take them out, just in case there's bleeding around the heart. They put an IV into his arm since they have to have some kind of access while he's here, and then she removed the lines. The worst part was taking off the tape lol I was surprised at how well Evan handled it all. He went right back to sleep when it was finished, and even slept thru the echo scan afterwards. He's been sucking on his pacifier for over 5 hours now, which has never happened before. I can't wait to feed him tomorrow!

We've also been going thru a lot of discharge stuff today. We've gotten his prescriptions filled, I am going to pick them up tomorrow. One of the nurse practioners is faxing all of Evan's heart information to his pediatrician for his appointment on Monday. Evan's first out patient cardiologist appointment is set for 10 days after discharge. We got all kinds of syringes to administer medication and his pill cutter and crusher have been ordered. I've got all of his paperwork ready in his binder. It's been a busy day! Tomorrow we will just be feeding him and if he handles it all ok, then we should be getting out of here Friday afternoon. :)

Hopefully I will be posting my next update from my office at home! But if not, that's ok. As much as I want to be home, I have learned that things change quickly, and Evan does everything on his terms, so if he's not ready to go home, we will be just fine letting him recover at the hospital until he is ready.

I will leave off with a quote from one of the doctors, it's from this morning during rounds when he was talking to the cardiologist.. "Apparently no one told the baby he has hypoplastic left heart.." Evan is just such a miracle, he proves it every day.

Spoiled.

That's exactly what Evan is; SPOILED! I swear it will take me 2 hours to post this update with one hand. Why am I only using one hand? Cause Evan has been laying in my other arm all day long! But trust me, I am NOT complaining, my poor guy has been thru so much, he can do whatever he wants :)

Tomorrow Evan will be getting his g-tube put in. It's only a 30 minute surgery, but I'm still worried. He will need to be put under anesthesia and be intubated for the surgery.. The Drs keep reassuring us that its a very common surgery and "not a big deal", but I will still be praying every second he's in surgery. The game plan now is for Evan to resume eating Thursday thru his gtube, and if (when) he does well, we will be discharged to go home FRIDAY! Oh I can't wait to get him home!! Scott & I were under the impression we would need to use a pump to feed Evan but the DRs today told us we will just be attaching a syringe and pouring milk in slowly. It will be more time consuming but atleast I will still feel like I'm performing "mom duties" by holding him and feeding him! Friday morning Evan will get his RSV vaccine and do his carseat test (make sure he doesnt de-sat in his carseat) and then we will be good to go. This morning the Dr was talking about Evan and was so amazed that Evan was going to be discharged just 30 days from birth. What an AWESOME God we serve!!

Has any other wife been suffering as much as I have been this season with the whole fantasy football thing? lol And of course Scott had to make it to the playoffs.. WOOHOO the last game is on right now! Kidding babe, feel free to spend your prize money on me ;)

Also I just have to add that these nurses in the CVICU are amazing. Our nurse today came into our room crying, practically sobbing, and I'm pretty sure it was because of her other patient. This little girl literally screams all day long! She's usually screaming "water". I'm pretty sure she gives everyone a run for their money. I go crazy just hearing her from down the hall, I can't imagine what it must be like to be IN the room.

I will be sure to update tomorrow after Evan gets his gtube in. Please pray for him <3

Setback.

Hope everyone had a great Christmas :) Santa is making a special trip to our house this year, he's waiting until all four of us are there. My mom was able to bring Elli up for the day yesterday. I got to snuggle both of my babies for the first time, it was very, very special! We watched Bolt and then took Elli to the Ronald McDonald house to play. We put together a couple puzzles and played a game. It was a great day, even though we weren't able to spend time with the rest of our family.

Yesterday was quite eventful for Mr Evan. I got a call from the nurse about 230am, Evan was running a fever. She said she was going to give him some tylenol, and then they had to run all kinds of tests. I got up and headed up to Evan's room, he was wide awake from having blood drawn and they put a catheter in to get a urine sample. Poor baby. We cuddled and he stayed awake for forever, poor mommy.. lol When the Dr's rounded, they decided they were going to do a spinal tap as well to check for meningitis. Ugh! Evan had that done yesterday morning.. All of the 24hr results are back and negitive. The final results come back at 48 hours, which will be tomorrow. And since the final results dont come back til tomorrow, that means no g-tube. :( I know they wanted to be thorough, but it was ONE fever, and his temperature has been completely normal since that ONE fever. I think it was an environmental thing, his room was warm, he was bundled and wearing long sleeve pajamas. We had to wait a whole week for the earliest spot in surgery to get his gtube, and now we are delayed. No one will know when they can fit him in again until tomorrow. So we probably won't be getting discharged this week... :(

Merry Christmas Eve! Today has been a good day, we have enjoyed just relaxing with Evan. Scott and I have been watching the movie marathon on USA for the majority of the day while taking turns holding little man. The only change for today was they upped Evan's milk intake from 70mls to 75mls. Speech therapy dropped by this afternoon and said she was going to write an order in for us to be able to dip Evan's pacifier in milk while he eats so he doesn't lose the desire to suck, but of course when I asked the nurse about it he said she didn't write it in his chart.. So that didn't happen. I'm really glad when we start going to speech therapy as an out patient, we will not have to see her. Scott and I also had some excitement today, Evan got us real good.. I was changing his diaper and he was being very quiet, which is NOT normal for Evan. I should have known something was up! lol Next thing we know, he is projectile pooping and it is going everywhere (luckily not on me!). What a disaster.

Tomorrow my mom is bringing Elli up to spend the day with us, I am SO excited!! We have tons of kids movies up here and I know she will enjoy spending the day with us. :) It will be great to have my family together on Christmas!

After finding out about Evan's heart, I knew I wanted to be involved in raising awareness about Congenital Heart Defects. We had never heard of HLHS, or any of the 35 different heart defects, yet they are the #1 most common birth defect. So today a thought came across my mind and after doing some research, I've decided how I am going to help the CHD community. I'm going to run a marathon. The American Heart Association is a partner charity with the Chicago Marathon and I can run to raise money for the American Heart Association. The minimum I would have to raise is $1500, but I'm going to make it a personal goal to raise more, I'll set a goal amount at a later date. It's not until October of next year so I have plenty of time to recooperate from having a baby and get back into the shape I was in, plus train for the marathon. Am I crazy? Maybe. But this is the way I am going to help other people with heart problems. If any other heart moms or friends/family would like to run with me, let me know! I can give you details about the costs for entering and such if you are really interested. :)

I hope everyone has a wonderful Christmas tomorrow! Don't forget, Jesus is the reason for the season ;) Be grateful for your life and everyone/everything in it!

Blah, I'm frustrated.

Before I get to my "rant", I'll update about Evan :) This morning he had his upper GI study, it was supposed to be at 8AM but they didn't take him back until 9:30. He couldn't eat after 4AM so of course he was starving and super fussy. We felt so bad! He was sucking on that pacifier so hard it was imprinted in his face. He didn't come back until 11:30 and finally got to eat at 12PM. The GI study was more for the surgeons so we haven't heard anything about it; I'm assuming no news is good news. Scott and I went home after Evan came back, we had a lot of little things to do at home before we come back next week. Had to make a stop at the store to pick up ingredients to make Santa's cookies of course ;) I finished wrapping presents and we stopped over at Scott's parents house on our way back. Evan is currently relazxing in Daddy's arms, he is all sprawled out, with a full belly, and is wearing the cutest little baseball outfit. Scott is so in love with his son, it's so sweet, ohhh they melt my heart ;)

So on to my rant. Everyday I get an email alert from Aetna letting me know I have another claim filed. Right now it's humerous, I look just to see who is charging what. Dr. Parilla, he's an ICU dr, his name has shown up atleast 6x, with a total of $1500 every time. I told Scott he's not aloud in the room anymore lol But really, I'm so frustrated with the whole concept of having insurance. Can somebody please, please explain to me why I'm "punished" for working and earning money?! I don't understand why I have to pay $150 a month in insurance premiums, plus my max out of pocket of $6600 a year. In 7 months, we are going to rack up a total out of pocket amount of $14,000 in medical bills. Seriously?! BUT, the best part is, if I didn't have a job, and Scott didn't have a job, we would be paying $0 out of pocket for medical expenses.. Really?! Of course having Evan here with us and healthy is worth and price, so we will do whatever we have to, but it just blows. It blows big time.   -_-

Down the road the sun is shining..

It's been a rough couple of days. I tried not to get my hopes up, but I did, and no one expected there to be any setbacks. Yesterday Evan had his swallow study, it's routine, and since he was doing so well feeding, nobody bothered to mention a possibility of something being wrong. The speech therapist tried mixing milk with up to 5ccs of thickener per 30ccs of milk, and Evan was still aspirating on it. Just a little bit was going down the wrong pipe. So what did that mean? No milk by mouth. I was so upset because I stayed the night with Evan and he took over 50ccs his last two feeds before the swallow study, and the last time only had to have 12ccs down the ng tube. It was the most he had ever taken. It was very disappointing, but I know this is best for him. I'm glad they found out now and not at home. An ENT Dr came and looked at Evan's vocal cords today, he "thinks" the left one is partially paralyzed; it's not moving as well as the right one is. They will check again in a year to see if it recovers on his own. Evan will have to wait 3 months before they redo the swallow study, and if he passes they will let him learn to eat again. Until then, he will be fed thru a g-tube. With this whole new development, we obviously are no longer being discharged this Friday. If all goes well next week, we are looking at being discharged Friday 12/30. Atleast we will be home for New Years.

Today we got Evan's pulse ox monitor he will have to use at home. At first I was pissed, really pissed, at how heavy this machine is. It's only like 8 inches long, but it's bulky, you tell me how I'm supposed to carry a 9 pound baby AND this 3.5 pound box with a handle too small for my tiny hand to fit in. Ridiculous. But then I started reading the manual and testing it out, and I am actually relieved to be bringing it home with us. It monitors Evan's O2 Saturations and his heart rate. His O2 sats have to be 75-90 and heart beat 120-180, and if they ever leave that range, the thing alarms like crazy. It will definitely give me peace of mind while he's sleeping.

Tomorrow morning they are going to do a scan of Evan's upper GI, just to check the anatomy. Then we will just be waiting til Monday when they place the g-tube in. They are putting a peg tube in first, which I'm not thrilled about, but in 6-8 weeks they will replace it with a button-like tube, which will be easier to deal with.

I absolutely love holding Evan, he is just so precious and loves to stare at me :) And I love how babies don't care how awful you sound when you sing.. lol You can see by his picture Evan is finally wearing clothes! He can only wear outfits that button all the way down, gotta have places for the wires to come out, so we are limited on what he can wear, but we're making it work. It sucks how things can change in an instance.. But this is part of having a heart baby. All that matters is having him in my arms & feeling his tiny heart beating.. <3

We aren't coming home this week and I don't know when we will be anymore. And no I don't want to talk about it.

SO EXCITED!!!!!!

I just can't contain myself.. lol During rounds today the DRs said they will hopefully be sending us home on FRIDAY!! Christmas Eve, what a blessing! Making it home for Christmas will be the best gift.. :) We have a lot to go thru this week in order to make that happen though, but if it's in God's will then it will happen! Evan is breaking all the "normal" hypoplast stats here. Instead of the 4-6 week stay we were expecting, we will have been here 3 weeks and 2 days, and only 2 weeks 2 days post surgery! What a miracle! I am so thankful for everyone's prayers, you all had a hand in Evan's speedy recovery.

Evan is still doing great, he had a good day eating too. They pushed his swallow study to tomorrow, the speech therapist was here earlier and she thinks Evan is eating great, but wants to make sure they don't need to put any more thickener in his milk. Since his swallow study was pushed, this also means his lines didn't get taken out, so that means no cute pictures in outfits.. :( But soon! ;)

Ok people, now down to the important stuff.. It has been beat into us that Evan CANNOT get sick between now and his second surgery. We've been advised to be on "lock down"; basically means NO public outings, including church, grocery store, parties, etc. If you want to visit, you must make arrangements with us first, please don't just show up. We will have such a hectic schedule once we are home and want to make sure we keep our routine. If you are sick, STAY HOME. This includes a runny nose, cough, sore throat, fever, cold sores, nausea, vomitting, diarrhea, the flu (duh), infections, pink eye, or anything else you even think could be contagious! If you have been exposed to anything I just listed, STAY HOME. It's going to be hard enough keeping Evan well with Elli being in Pre-K! Sorry if this offends anyone, but I really don't care... lol It's in Evan's best interest so please try not to take it personal.

This week Evan will have his hearing test, vision test, carseat stress test, his synagis shot, all tubes removed, swallow study, get his pulse ox monitor for us to use at home, get his scale, and Scott and I will be taking over giving him his medications. I will update again tomorrow with more good news ;)

The "D" word

Finally! Someone mentioned the "D" word to us today; DISCHARGE!! One of the nurses came in to let us know we are getting close, the DR thinks we are about a week away.. WOOHOO! We are going to meet with that nurse again tomorrow, she is part of a project the hospital started to monitor hypoplasts from home, and we are going to sign some consent forms to participate in a national study and the home monitoring program. Basically we will just have to keep track of his feeds, medications, weight, and etc. weekly for our appts, which we wanted to do anyway. And of course we are more than willing to do what we can to help other families in the future. Oh I am just so thrilled that there is a light at the end of the tunnel! :)

Evan, of course, is having another wonderful today. He made MAJOR progress eating today!!! He only took 15 and 20mls during the morning feedings, but then Scott and I went to walmart and bought some different types of bottles to try.. When we got back, it was time for him to eat again, and we tried the Gerber Nuk brand bottles, the nipple is shaped the same as his pacifier that he likes. And guess what, he took 43mls of his 70mls! Then at his next feeding, we used the same bottle, and he took a whopping 55mls!!!! He only had to get 12mls put down his tube. :) I fed him again about an hour and a half ago and he took 45mls. I am so proud of the little guy!! He is doing so so good, God knows what his needs are and is definitely providing! I am praying he does this well tonight, I want the DRs on rotation this week to be amazed with his progress when they see his numbers tomorrow! Evan seems to really be getting the hang of this whole "baby" thing, lol. He has started getting fussy every 3 hours, and has been way more awake for his feedings. I held him for so long today, I love having him in my arms. I can't wait for his line in his chest to come out tomorrow, we are always so tangled in all of his wires!! lol And then I get to start dressing him up! :)

I can't wait to be home.. I can't wait to take our first "real" family picture, the four of us, outside of this hospital. We are almost there though! And yes, I am nervous to be home with Evan and not have a nurse or Dr right there to help if needed, but God has been with us every step of the way and I know He will be with my Evan every second of his life..

Thank you everyone for your continued prayers.. Another heart mom I met through facebook had her son today, he was born with hypoplastic left heart as well as another heart defect. Please keep Heather and her family in your prayers too. I know how hard the next few weeks are going to be for her and I pray she has as much peace as I have had. I know all of the CHD babies are gifts from God and have a purpose for their life, but it's so hard to see another family go thru the pain we have gone thru..

Today I realized I know more about the equipment in this room than the nurse-in-training does. I'm listening to our nurse quiz the training nurse out loud, and I have answered every question right. For those soon-to-be heart moms, never be too timid to ask questions. I'm sure I get on some of their nerves, but no way they are coming near my kid with anything before they tell me what it is and why they are using it. Sometimes I'm asking what it is for the 3rd or 4th time, but I want to know everything.

Evan is still doing great! He's such a miracle baby, and everyone here knows it. They all comment on how AWESOME he's doing and how quickly he has recovered. I just love love love him! I thank God every time I think about Evan's recovery. I know He is behind it all! This morning Evan took 22mls by bottle!! Granted he needs to take 60, but that was over 1/3 of what his goal is! It's the most he has taken so far. The second feeding he took 8mls, but that is better than none! He was really, really trying too. He's got the instinct down, he opens his mouth real wide to latch, but he's still a little iffy about the whole sucking thing. But that's ok! He's getting it. Evan slept thru his last feeding, lol. That boy is such a heavy sleeper, nothing wakes him up! The DR this morning said they are going to do a swallow study on Monday. Basically they let him swallow this stuff that shows up on an x-ray, and it will show them if the liquid is going where it's supposed to be. We noticed Evan hasn't gagged at all today too. I think he's getting the hang of this whole eating thing, he just needs some more practice!

Yesterday I spent the day with Elli.. I went to her Christmas party at school and then we made a gingerbread house and watched movies. My dad came to pick her up and she did not want to go.. It breaks my heart to leave her for so long at a time. My parents brought Elli to visit Evan this morning, she did a lot better this time. Evan was wide awake for a long time too, and Mama got to hold him for the first time. Elli was still too scared to come over and give him a kiss.

The weekends are really quiet here.. There won't be anymore changes until Monday, just going to continue working on feeding. Please keep praying for Evan, poor baby has gone thru so much and is having such a hard time with this whole bottle deal! Thanks guys :)

Take a deep breath.

Deep breaths.. That's something I need to do more often.

Evan is having a wonderful day. I am posting from our fourth room on the CVICU floor.. lol Yes, we have been moved again! But I am perfectly ok with that. We are back in a "normal, not so critical of a patient" room, good news for Evan! Little man has been great all day, his breathing, heart function, and BP have all been great today. He got his arterial line taken out of his leg this morning. The only "plan" for Evan today was to continue trying to feed him. The speech therapist came to work with him this morning but he only took 8mls. The rest of the day has been unsuccessful. I think it has a lot to do with all the gagging he does. All of the nurses have been reassuring us that it's very common for hypoplast babies to have reflux problems, and just about every baby goes home with a g-tube (they remind me of the thing on a pool inflatable that you blow air into). While it isn't ideal, we are "ok" with Evan getting one, as long as it gets us home. We can work with the whole bottle feeding thing while we're at home, I'm sure it will be a lot less stressful there.

Thank you to everyone who wished me a happy birthday today. I was having an "off" morning so if I didn't personally thank you, I'm sorry. My wonderful hunny took me out to dinner tonight, it was great to get away from the hospital for a little while. Tomorrow morning I am heading back to Lakeland for the day. Elli has her school Christmas party and I want to be there. I miss her so much! Looking forward to making our gingerbread house together :)

This morning the ICU dr said Evan was a miracle for making so much progress this quickly. But that's nothing new, we all know what a big MIRACLE this little guy is! ;)

Progress..

Evan has made some major progress today. They have removed his chest tube, removed the line in his right leg, taken him off of milrinone, and stopped all of his medicine drips! He's now taking 20mg of baby aspirin orally and his seizure meds; and that's it! He's been stable all day and this was a huge step towards coming home. The only thing left is to remove his pacing wires and central line, and then learn to eat. I have known from the beginning feeding was going to be an issue, but I didn't realize how big of an issue it is. Last night Evan barely ate anything by bottle and had to have his whole bottle go down his tube. This morning I fed him and he took 17 out of 32mls by the bottle, which was awesome. They upped his goal to 40mls every 3 hours and it's been very challenging. He only took 5mls the second time, but in his defense he was asleep the whole time. They called in a speech therapist to work with Evan and since they gave him a dose of fentanyl to take the chest tube out, he was of course knocked out for that feeding too. She's going to come back tomorrow morning and try again. Evan only took 2mls this last time..

Before I get this off my chest, I just want everyone to know that I am still amazed and grateful for how fast Evan is recovering. He is only 1 week post-surgery and has made tremendous progress! I'm by no means complaining, just frustrated. An occupational therapist came today at the same time the speech therapist was here trying to work with Evan. They both really, really frustrated me and unintentionally hurt my feelings. Evan is only 2 weeks old and has endured more than most of us have or will ever in our lifetime. The OT had a negative comment for every movement or facial expression Evan made. She kept saying how he was showing how stressed he was and showing he didn't want to be touched. She was telling us how he needs to lay certain ways because he doesn't know how to lay like a normal baby would. And then she said she would come and show me how to hold MY BABY. No thanks. I've only been able to hold him a handful of times, and he has had lines and tubes coming out from every limb of his body; I've been too scared to cradle him or move him!!! He has a fresh incision running down his chest, of course I'm going to be extra gentle with him. Then it was the speech therapists turn to rub salt in my wound. Evan had gone 13 days without eating. Moms are encouraged to nurse their babies within the first hour of life! But not me, not my baby. He survived on liquid nutrition. He has also had a breathing tube shoved down his throat for 11 days, I wouldn't want anything in my mouth either if I were him! I felt attacked, like they were telling me that I wasn't doing something right. How am I supposed to "teach" my baby to act like a baby?! Poor little man, it's not his fault.. It just breaks my heart to see him stare at me when I'm trying to feed him, it's like he's asking me "What am I supposed to do with this?"

It's so hard to stay strong and keep a positive outlook sometimes. A lot of days I just want to lay in bed and cry, or drive far away. But I am here for my son. I may not be as strong as I should be, but I'm here...

Just amazed.

Take a look at Mr. Evan, notice what's missing?! That's right, no more nasal cannula! WOOHOO!! Evan is having another awesome day, praise God! He is breathing completely on his own, they have weaned his milrinone down, he is off of the epinephrine, and he started eating today! Evan is still on the heprine and seizure meds, but he will be coming home on the seizure meds and they will switch him to aspirin from heprine so all we need to lose is the milrinone, and it's at the lowest setting so it should be gone here soon!

So Evan had his first bottle today. His goal is 30ml every 3 hours. His first bottle he took 10mls and then coughed and didn't want anymore. He still has a lot of congestion in his lungs from the breathing tube so it's slowly working itself up. His second feeding he took about the same amount, coughed, and then he was done. lol And then he passed out! Since he didn't finish his feeds, they put a NG tube into his stomach to give him the rest of the milk. Not a big deal, he did really well for it being his first time ever eating. :) We are so proud of the little man! I also just talked to the nurse, she's going to clear it with the DR but hopefully tomorrow I will get to nurse him. Praying that goes well for my sake! LOL

I'm still so amazed at this little miracle God has blessed us with. He has already changed my life in so many ways.. Today I was reminded at how blessed we really are. Scott and I were headed down to eat lunch and while waiting for the elevator, we overheard a mom from the CVICU talking to the Chaplain. I tried not to listen, but it was hard not to. She was questioning why she has to suffer, why her baby has had to code (stop breathing and have to be resuscitated), why her baby... That mom has been on my mind all day. I feel so selfish for being wrapped up in my world, I haven't stopped to pray for any of these other babies and kids on the 5th floor. Please make sure you think of all the kids in this hospital when you are praying for Evan!

I can't wait to get little man home! We are having Christmas late, if we aren't there before the 25th, and I am so looking forward to the four of us being together again. I miss my Elli SO MUCH! Yesterday she was naming off all of the people praying for her brother, she has such a big heart..

Oh yeah, I almost forgot.. lol This morning I saw some big guys walk by Evan's room and they were wearing santa hats and Tampa Bay Bucs jerseys. I thought they were just visitors. Then I saw a couple more walk by. So I ask Scott, are those Bucs players? He didn't see them and just then Legarrette Blount walked by lol They were visiting kids in the hospital today.. Too bad we got stuck behind them at lunch.. LOL Scott's still crossing his fingers the Rays (or what's left of them) make a visit.

Looking forward to updating tomorrow night, GOD IS SO GREAT!

Hello World!

As you can see by Evan's picture, we have ditched the breathing tube! Evan has made some major progress today, I am SO proud of my little man! They took the breathing tube out about 2:45pm, he is on just a tad bit of O2 now. He also lost his catheter, he was peeing out of it anyway lol Evan is now off of ALL sedation! No more fentanyl! And they have weaned his epinephrine down to the last setting. I'm sure that will be gone tomorrow. Evan was wide awake after they took out his tube and was looking back and forth between Me, his toys hanging above him, and his daddy. SO CUTE!! The nurse also let me hold him for about 45 minutes, I loved every second of it! He's snoozing away right now but after he wakes up and the nurse does her assessment, I'll get to cuddle him again! Woohoo!!! Evan's numbers have all looked great today, the day nurse even commented that Evan was "miraculous" after she did his first blood gasses when his tube was removed! :o) He is such a fighter!!

The DRs said earlier today they should start feeding him milk Wednesday or Thursday. It will be just a few mls an hour at first, just to make sure his stomach can tolerate it. After that they will try to see if he can take a bottle. This is where all of you come in! We need lots of prayers that Evan will be able to eat on his own; a majority of hypoplasts have a very difficult time learning to eat or finishing the amount they are supposed to eat. It would delay us in coming home. Please pray this little guy likes to eat as much as his dad!! lol

I can't tell you how awesome it is to have such a great day. I can't believe how quickly Evan is recovering! We are that much closer to taking him home :)

Such a handsome boy!

Hey everyone! Evan is having another great day!!! They have weaned him off of the venitlator a little bit; he is now on room air only and they turned the respiratory rate down so he is breathing a lot on his own! As you can see by his picture, he has been more awake today too :) Mimi and Pops came to visit earlier too and he gave them a little peak at his big brown eyes ;) If you can't tell, we are just so in love with him lol I can't wait to cuddle him!! It would be an AWESOME birthday present (Thursday) if we can hold him by then. I hope all of our updates keep you guys praying, he is proving every single day that God is answering them! Hope everyone has a great Sunday..

While everyone is praying, if you can add one more prayer request to your list, one of my fellow PCSO families is in need today. Please pray for Sgt. Whitmore's family as they mourn their loss. You can read the story here. Such a tragic accident. Pray for all of our deputies, firefighters, and EMTs/Paramedics who work on the road everyday. I will hug my firefighter a little tighter from now on..

Today was..

.. Another good day :) This morning Scott and I got to Evan's room before the DR's rounded. We talked to the cardiologist and he was still very pleased with Evan. The decided to take him off of the BP medicine about 10am. He has done GREAT without it all day. His BP didn't dip at all and has been consistent. That was the only change they were going to make today, and we were OK with that. He is steadily making progress. My dad came to visit Evan this morning and Evan opened both his eyes up for us while he was here. He was more alert today, still pretty sleepy for the most part though. He responds to touch very well, lol he has let us know that he does not like to be bothered when he is comfy! The neurologist said they didn't see anymore seizure activity after he started the medicine yesterday, but they left the EEC machine on today anyway. I'm hoping they take it off tomorrow, it looks like a turban and covers his whole head! lol The cardiologist said they will do a MRI next week just to make sure there aren't any issues with Evan's brain. They have to take the pacing wires out first though and he will need to be on the breathing machine to do it. I'm hoping it's early next week, I want the breathing tube out, but I'm OK with him keeping it if he needs it. My sister also stopped by to visit "little" man. :)

I love love love the people I work for. Really. I couldn't ask for better co-workers, or a better employer. They have all been so supportive, it really blows us away. And to our special visitors today, all I can think of to say is THANK YOU, but I know it's not enough. I can't even begin to describe how much your visit meant to me.. I will treasure that picture forever; I can't help but get teary eyed everytime I look at it.

I'm really missing Elli today. She was going to come visit but we decided to wait until the head thing is taken off before she comes back up. It's so hard to be away from her and not feel guilty about it. I know Evan really needs me right now, but I really need my Elli. She is in great hands; my parents take such great care of her and it's awesome to not have to worry about her, but I still want to be there with her too. I'm hoping to make a trip home this week to see her.

I'm sitting in Evan's room as I type this and he looks so peaceful. He is curled up on his left side, just snoozing away. The view from his room is amazing by the way. We can see the water during the day, and the buildings all lit up in downtown at night. There's so much peace in this room, even with all of the machines beeping and making noises.

That's it for today folks. Praying I have more good news tomorrow evening, and every day after! Keep praying for little man! :)

Ups & Downs

Well, we can't expect every day to be perfect. We called to check in with Evan's nurse about 6am and she said Evan had a couple of "twitching" episodes and they are monitoring his brain waves to check for seizures. Well when we got here this morning, Evan had a few very short seizure episodes. His right arm twitched for about 15 seconds and they saw it on the brain wave monitor too.. Nobody was "rushing" in or making it seem like a big deal, but every change is scary to me. They ordered a head ultrasound to see if there was a brain bleed or any other neurological issues. In the meantime, the Neurologist put Evan on a seizure medication. She said babies handle it very well and there are no side effects, other than it will make them a little more sleepy. They gave him a very large starter dose, which has had him knocked out for the majority of the day.. I was very bummed out because he was wide awake this morning, both eyes open and responding to us touching him. But I know it's all for the best. The DR also ordered for Evan to get a little bit of blood today, his levels were a little low, and for him to be taken off of his BP medicine. Evan's BP drops a little bit when he gets his dose of lasix so they ended up leaving him on the BP meds.. They also increased his epinephrine a little more, he was down at the minimum this morning. Evan's brain waves are still being monitored, they are leaving it on for 24 hours so it will be gone tomorrow morning. The cardiologist said if he does well this weekend (which he will) then they will try and take out his breathing tube on Monday! That would be awesome. He also said if Evan keeps progressing the way he is now, we may be able to go home around Christmas! It's encouraging to know he is doing so well, but I know things can change in a second so I'm not "planning" on being home by then, but it would be nice.. The Dr came back this afternoon and said Evan's head ultrasound looked great, no abnormalities found! Thank God! His echo also came back great!

I think the lack of sleep is starting to catch up with me. Or maybe it's "post-partum" issues. Or the stress of having a sick baby. Or being away from my Elli. It's hard to deal with evrything at once. I KNOW every day isn't going to be "great" but it's very hard to deal with every day issues when there "may" be a problem. Don't take that the wrong way; I have so much faith that God is watching over Evan, but it's still a struggle every day.

On a side note, I'm going to have a NEPHEW in a few months!! I'm so excited :)

We have kind of settled into a routine here. We spend about 12+ hours in his room. Surprisingly, the time goes by really fast. I can't believe we will have been here for 10 days tomorrow. Hopefully we will be making more progress every day! Can't wait til we get to hold him again!

Another bridge crossed!

Today has been another good day! Evan made it through the first 24 hours with NO problems! Evan did great last night, his heart rate was pretty high this morning, they lowered his epinephrine and his heart rate has come down. Dr. Chai decided to close Evan's chest this morning too. They also replaced the line in his chest, it was against a wall in his heart so that's why they couldn't use it last night. Dr Chair came out to meet us in the lounge and again very nonchalantly told us it went well and there were no complications. Then said he was gonna go back and close another baby's chest.. It just blows us away that this is his "normal" every day job. We also thanked the anesthesiologist this morning and he just shrugged his shoulder like it was no big deal. Thank you just isn't enough. Evan has continued to have a great day. They have been slowly lowering his epinephrine and have taken him off of the paralytic. He has just starting coming around in the past couple hours. Highlight of our day was about 6pm.. Scott and I were talking to him and all of a sudden he opened up both of his eyes! He still looked pretty doped up, lol, but it was nice to know he recognized us! He is also A LOT less swollen, his eyes are hardly puffy at all and the rest of the swelling has gone down significantly as well. The nurse told us yesterday to expect him to be more swollen today and tomorrow but he is the opposite. Evan is just showing everyone how awesome God is and will continue to prove it! During shift change the day nurse only had great things to tell the night nurse. She said he has been a "rockstar" all day. :) The cardiologist just stopped in as well to let us know he is still very pleased with all of his stats! Go Evan!

Fortunately, that is all I have to report today!! I am so grateful God is with my sweet boy and taking such good care of him. Will update again tomorrow, with more good news I'm sure!

How great thou art..

I've been thanking God all day for the peace and strength he has given Scott and I. No way we could have made it through today without Him with us. All the glory goes to God! He is answering our prayers and watching over Evan every second. He guided the surgeon's hands today and was with every nurse, doctor, and technician that came in contact with our baby boy today. We will continue to pray for a speedy recovery for Evan and a complete healing. This lilttle boy has touched so many lives already, I know God has an amazing purpose for his life..

Today has been such a long day. I slept less than 2 hours last night and we were up with Evan again at 4am. He had another stable night and was ready for surgery when we got here this morning. Scott and I prayed with him and waited with him until the team came to take him back about 730 this morning. We talked to the anesthesiologist and Dr Chai again and then walked Evan back to surgery. I knew God was with him and would take care of him, I had peace when I gave him my "see you soon" kiss and he was wheeled away. All of our updates were quick, the nurse came with good news each time. After our last update we were taken to a consult room to wait for Dr Chai. He came in and let us know the surgery went extremely well, it went as well as any Norwood he has done. There were no complications. He left the sternum open but closed the skin on his chest. He will go in and close the chest tomorrow or Friday. All we could say is 'thank you', but it doesn't seem like enough. How do you thank a man who nonchalantly walks into the room and tells you he has repaired your baby's heart? I will be forever greatful to Dr. Chai, and will pray for him everyday, for God to always guide his hands. We had to wait another 2 hours before we could come back and see Evan. The nurse went over every single tube, wire, and machine. It wasn't as bad as I was expecting. Evan has a chest tube that is draining blood and fluid out from around his heart. There's another central line in his chest that tunnels under his skin directly into his heart. He has a catheter in. There is an arterial line in his leg to monitor blood pressure and give the nurses a way to draw blood every hour to check blood gases without sticking him in the fingers/foot. He still has his central line in his other leg, but they will be taking that out in the next few days. He is on 7 medications, they are helping his heart pump, a paralytic, pain medication, blood pressure meds, and a few others. He has his breathing tube down his nose now, and his g-tube in the other nostril, with a continuous suction to get all of the fluid out of his stomach. Lastly he has a clear dressing over his incision site. Since the chest isn't closed yet, you can see his little heart pumping under his skin. We will not be uploading any pictures of Evan until he starts healing and gets taken off of some of the machines. This is something I wish no parent should have to go thru, and I don't want to scare any moms who are expecting a baby with HLHS. Evan has continued to be stable since he has been in his room. There will be a nurse in the room at all times for the next few days. The intensive care DR on call just came in, the chest central line is backing up and they aren't able to flush the line. They have ordered a STAT echo to see where the line is. It's not a major problem, they just want to see why it's not working.

Scott has been my rock throughout this journey so far and I am so thankful God brough him into my life. There's not way I could make it thru this without him. He is such a proud Daddy and can't wait to get him home.

We are going to try and go to sleep early tonight, it's been an emotional day. Hopefully we can sleep. I know God is still with Evan and watching over him, he won't be alone tonight.

Again, thank you to everyone praying for Evan. His progress today is proof our prayers are being answered. We aren't going to stop believing for complete healing for Evan. I can see God is working a big miracle in my Evan's life. Please keep praying..

Praise the Lord!!!

Surgery is finished. We just talked to Dr Chai and he said everything went very well! His anatomy looks great and the heart seems to be functioning very well. He closed his skin but they left the sternum open for swelling. They will close it tomorrow or Friday. This is just the first hurdle, tonight will be challenging as well.

Thank you all so much for your prayers!! Remember to thank God for answering them! Keep
Praying for Evan's recovery. We will update later tonight. Love you all!!!

Update #4

Surgery is complete. Everything went well, but this is the most critical part. They are slowly taking him off of the heart and lung machine. Next update will be in an hour or so..

Thank you God for guiding the surgeon's hands!

Update #3

Evan is still doing good. He is on the heart and lung machine. The Dr has completed the first part of the surgery, the BT shunt is in place. They are now working on reconstructing the aorta. Should have another update by 12:30.

Update #2

The nurse said they started the surgery about 30-40 minutes ago. So far everything is going well, praise the Lord! She will update us again in about an hour & a half.

But those who wait on the Lord will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint. 

Isaiah 40:-31

Update

We just met with the anesthesiologist and Dr Chai. We walked with Evan to the door.. Should be starting surgery within the next hour to hour and a half.

My God in whom I trust..

Evan had such a great day today. He did very well last night and there were no complications from the cath procedure. This morning the DRs decided he needed some blood, his levels were a little low and they thought it would be best. He was very stable all day. Scott and I both got to hold him for a little over an hour each. Evan slept the whole time in my arms, we played him his lullabys and he just snuggled up to me. :) He's so precious, I wish I could pick him up and hold him close whenever I wanted to.. We stay in his room as much as we can so he can hear our voices all day and know we are there with him. Evan started to get fussy after a couple hours so we put him back in his little crib.. Then the nurse let me give him a bath! lol He definitely was not happy about that though! Poor little guy, he "cries" but no sound comes out, he just scrunches up his face and gets bright red. The nurses weighed him after his bath and he weighs 11 pounds!!! He's got a lot of extra fluid, that's why he's so swollen. As soon as we were done weighing him he was very alert. He opened up both eyes and just stared at me and Scott. I love knowing he recognizes our voices, its so hard for him to open his eyes and he tries and tries, so I'm glad it's us he sees when he finally opens them. He watched us for quite a while before he went back to sleep. The rest of the evening was uneventful, he is still doing great and Scott and I are trying to get some sleep..

We are heading back over to see Evan around 4AM. We want to let him know we are there for him and pray for him as much as we can before he goes back for surgery. They will be taking him back around 7 AM and the surgeon will be coming to talk to us before they get started. The surgery will only take about 4 hours but we are anticipating waiting about 7+ hours before he is settled back in his room and we are aloud to see him.

I'm not really sure how I'm going to handle tomorrow.. How do you hand your baby over to someone and give them permission to cut their chest open and attempt to repair your baby's heart? All I know is God will be with us all tomorrow. I am praying for God to be with the surgeon, doctors, nurses, techs, everyone who comes into contact with Evan. Praying he guides their hands and everything goes smoothly. Praying my sweet baby makes it through this surgery. Praying for strength to be there for my baby..

Please do not text or call us tomorrow.. We more than appreciate you all thinking of us, but I can't begin to describe the emotions we are going through/will be going through, but I promise I will update the blog everytime we get an update. It will be easier to update everyone at once here and not be on our phones.

Please continue to pray for Evan.

Psalm 91

 ¹ Whoever dwells in the shelter of the Most High
   will rest in the shadow of the Almighty.
² I will say of the LORD, “He is my refuge and my fortress,
   my God, in whom I trust.”
 ³ Surely he will save you
   from the fowler’s snare
   and from the deadly pestilence.
⁴ He will cover you with his feathers,
   and under his wings you will find refuge;
   his faithfulness will be your shield and rampart.
⁵ You will not fear the terror of night,
   nor the arrow that flies by day,
⁶ nor the pestilence that stalks in the darkness,
   nor the plague that destroys at midday.
⁷ A thousand may fall at your side,
   ten thousand at your right hand,
   but it will not come near you.
⁸ You will only observe with your eyes
   and see the punishment of the wicked.
 ⁹ If you say, “The LORD is my refuge,”
   and you make the Most High your dwelling,
¹⁰ no harm will overtake you,
   no disaster will come near your tent.
¹¹ For he will command his angels concerning you
   to guard you in all your ways;
¹² they will lift you up in their hands,
   so that you will not strike your foot against a stone.
¹³ You will tread on the lion and the cobra;
   you will trample the great lion and the serpent.
 ¹⁴ “Because he loves me,” says the LORD, “I will rescue him;
   I will protect him, for he acknowledges my name.
¹⁵ He will call on me, and I will answer him;
   I will be with him in trouble,
   I will deliver him and honor him.
¹⁶ With long life I will satisfy him
   and show him my salvation.”

Emotional Rollercoaster

Man I don't even know where to start.. We checked in a few times last night and Evan was still doing really well. This morning we went over to visit and he looked so good :) I still can't believe how chunky he is! Anyways the ICU dr stopped in and let us know the cardiologists and surgeons were still on their weekly conference call discussing this week's cases and should be by shortly to give us an update. One of the cardiologists came in shortly after and let us know there was a potential problem. He said based on the last echo they think there is something else wrong with Evan's heart. The coronary artery coming from the left side is very large, and lead them to believe there could be some narrowing as it comes down to the bottom of the heart. The only way to know for sure was to do a heart cath. We then met with the other cardiologist who would be doing the cath and he gave us grim news. If they did find out there was narrowing in the coronary artery, Evan would be significantly higher risk for the surgery and we would need to also consider a heart transplant. Scott and I tried to stay positive but its so hard to get something like this thrown at you first thing in the morning and the outcome could potentially change everything. Evan went back for his heart cath about 145 and we didn't get to talk to the cardiologist until about 5pm. LONGEST waiting period ever. It's so hard to sit in the waiting room, just waiting. I knew when not one but three DRs came into the room that they didn't have good news. I can't even begin to explain the new "defect" they found. It was so unbearable to sit there and listen to them explain another problem with my perfect baby boy.. The DRs said our only options were to proceed with the Norwood surgery as planned, but the chances of Evan making it to the next surgery would drop to about 50%, or we could have him put on a waiting list for a heart transplant. Like I have said before, it's an unbelievable feeling to have no control over his life, but it's an even more unbelievable feeling to have his life put in your hands. This whole time we have thought the Norwood surgery was the best route to take, and the DRs have always agreed it was the best route. But now they had two options, and could not recommend one over the other. The choice was left up to us. How do you decide? How can I stand behind a decision for Evan's life, not knowing what the long term outcome will be? From the first day we found out about Evan's heart defect I have never wanted him to suffer. My number one concern has always been his quality of life in the future. I don't want my baby to go through life suffering in a hospital because I am too selfish to let God have him back. But this little boy is fighting so hard for his life, he is my hero and everytime I see him fighting for his life he gives me so much strength to fight for him too. Dr Chai, the surgeon, came by about 745 to talk to us again about the surgery vs. a heart transplant. I prayed and prayed for God to give us wisdom to make this decision and as soon as Dr Chai started talking I know God was answering my prayer. He gave us so much hope for Evan, 85% chance to make it through the first surgery! He let us know he had just participated in a nationwide study of 500-1000 HLHS babies and he is friends with the DR leading the study and he asked him if the complications Evan has made a difference in the mortality rate after these procedures and he agreed that there doesn't seem to be a connection. But every HLHS baby is different. No heart is the same. We are giving our son another chance at life, if it's in God's will Evan will make it through these surgeries and lead a healthy life. I pray every second that he heals my sweet baby, pray that he doesn't suffer and can come home to our loving family.. But I trust that the Lord has a special plan for Evan's life. I have so much faith that he will be OK.. Even so I can't help but cry watching every day unfold. But I don't take any of this for granted. I cherish every single second I get to spend with my Evan..

On a good note, Evan did SO good thru the cath and all day. He tolerated the cath lab way better than he did the last time. He was also very alert this evening. He loves holding onto Mommy and Daddy's finger :) He also opened his eyes for us a few times, I just love knowing he hears us and wants to take a peek!

Surgery is now for sure scheduled for Wednesday morning. They are going to let him rest tomorrow and keep recovering from the cath today. Hopefully we will be able to hold him for a little bit tomorrow too!

On a side note, if you have sent me a message or anything to let me know you are praying and thinking of us and I haven't written you back, I'm so sorry, but please understand how much stress we are under right now and hopefully reading my blog you see how chaotic our days are! We really do appreciate all of the support!

Another good day for Evan

Just a quick update, it's late and I'm exhausted.

Evan is doing so good, praise the Lord! He was taken off of the paralytic yesterday morning so he is more alert. He cracked his eyes open a couple times for us too. He is still on the prostaglandin (keeps his duct open to pump blood to the rest of the body), fentanyl (for pain), lasix (for liquid retention), lipids and a liquid diet stuff (for nutrition), milrinone (to help the heart function better), and his breathing machine. As hard as it is to see our little baby with a tube down his mouth, it's reassuring that he is doing so much better and not working as hard to keep functioning. Evan had several visitors yesterday. He finally got to meet his big sister! A counselor talked to Elli before she went back in the room and took pictures of what machines Evan is on and explained what they all did. She gave Elli crayons and a journal to draw pictures for Evan too. Elli drew a beach with sand and a boat and rainbow for him and it's in his little bed :) She only stayed in the room for a few minutes, she was a little scared, but she is already in love with him and can't wait to "hug him tight" when he gets home. My sister and parents also came by to see Evan as well as Scott's parents. I think it's hard for other people to see him the way he is right now.. Hopefully it's reassuring to them to see Scott and I so positive about his condition right now. We stayed with him until we met the night nurse yesterday then came back to our room to get much needed rest. We call the nurse to check in everytime I have to wake up and pump and he had a really good night last night too. This morning we went over early to see him and he was still doing great! The Drs came around and decided it would be best to give him some blood today. The DR said it would really help with all of the liquid he is retaining. It's so good to see Evan responding to us too, although it's SO SAD to see him make a crying face and not hear him actually cry. We left around 1030 to come home and spend the day with Elli. It was awful being at home for the first time without Evan. It took everything in me to get it together before Elli came home. She was so excited to get to spend time with us. It's very difficult to leave my sick baby to spend time with my other baby.. She knows her brother's sick but I don't think she likes me not being home. She did say Mama was taking very good care of her though. We watched Santa Paws together and played "Chefs" while we baked cupcakes. The nurse called us around 4 to let us know Evan was moved to another room. He was at the very end of the unit and now he's in a more central area. The nurse also said Evan did really good with the blood too. We came back too All Childrens about 830 and visited with the little guy. He still looked really good and was sleeping for a little bit. He woke up quite a bit before we left and responded so much to us! He has a great grip and his left hand doesn't have any Ivs in it so we hold his hand as much as we can. We've also developed a little game, not sure if he likes it too much though.. lol He sticks his little tounge out and as soon as you touch it he pops it right back in. Lol it's soooo cute and I got a video of it, I'll have to figure out how to post it. Tomorrow morning the surgeons get together and decide what surgeries need to be done, so Evan will hopefully be confirmed for Tuesday morning. Dr Chai (the surgeon) should be coming by to talk to us again about the procedure. We are going to hold Evan tomorrow too as long as that's still ok with the DR. We were given the go ahead on Friday but after everything that happened Thursday we wanted to just let him relax.

Today was a very rough day for me emotionally. I'm still trying to recover from having a baby 4 days ago while dealing with the stress of Evan's condition and Elli's life being disrupted. Going home not pregnant and with no baby is something I wasn't prepared to deal with. I still feel completely overwhelmed and sometimes I feel like I can't handle it all. It's a miserable feeling to have no control over your life and watch your new baby struggle the way Evan is. As a mom you naturally want to protect your child and not being able to help Evan breaks my heart. I don't think I will ever get over not being the first person to hold this child I carried for 9 months..

I will do my best to update tomorrow aftter we talk to the surgeon. Keep praying for our little warrior, his fight is just beginning.

There will be good days and bad days..

This is something we have learned very quickly. Yesterday morning we came over to visit with Evan and he was doing great. The DR talked to the surgeon and they decided it would be ok for him to eat before the surgery. They were even going to let him try to nurse. Then the cardiologist decided it would be best to take him to the cath lab to try and push his line in his belly button a little bit further. They gave him morphine for the pain. Once he got back to his room, it was an hour after he had the morphine, and he was having a lot of trouble breathing. All of a sudden people come rushing into the room.. Evan wasn't able to breathe on his own. That was by far the scariest moment in my life.. We just sat back and watched everyone working with him while he struggled. They were able to stabalize him and things calmed down.. They check Evan's blood every few hours and his CO2 level was very high, in the 80's and they like it in the 30-40's. After another long hour they tested it again and decided it would be best to intubate Evan so the machine could control his breathing.. It's so sad to see him with the tube down his throat.. He did finally open his eyes for us though, it warmed my heart to know he wanted to see Mommy and Daddy :) Throughout the day his levels were getting better but he was struggling last night and the DR decided it would be best to keep him sedated. They also made an attempt to start a line in his arm but he had stubborn veins and they were unsuccessful. We left for the night after midnight yesterday, the nurse reassured us that he was very stable and didn't forsee any problems through the night. This morning we came up to see Evan and he looked so precious! He has a NG tube in to make sure no secretions get into his stomach or help if he vomits, and is still on the paralyzer and pain medication. He's also on a medication to help make his heart pump stronger. They have been testing his CO2 level today and it's down a lot and the DRs seem happy about it. Evan had another echo done today and the cardiologist said his heart is pumping great and everything looks really good. He is tentatively scheduled for surgery Tuesday morning. The DR also made a last attempt at getting a central line in, they tried both legs and were unsuccessful so they are going to wait until he is in the operating room to put one in. The cardiologist is going to keep him on the paralyzer until surgery, just so Evan can recover from all the work he was doing the last two days. I just suctioned out his little mouth too :) He has the chubbiest cheeks and neck!!

As for Scott and I, we are doing a lot better today, thankful for the peace God has given us today. As much as it breaks my heart to see Evan with all of these tubs and wires in, it's very relieving to know he is so much more stable on the breathing machine. We've had a relatively uneventful day today and are hoping it stays this way.. We are going to check into the Ronald Mcdonald house tonight.

Big sister Elli will be coming for a visit tomorrow, I can't wait for her to meet her beautiful baby brother!!

We are SO thankful to all of our family and friends who are reaching out to help in any way possible. Please, please keep praying for Evan. I know God is with our baby boy and will be watching over him every minute..

Happy Birthday Evan!!

Today we finally got to meet our sweet baby boy! It's been such a long day but I want to write everything down before I forget it all!

First off though, all the praise and thanks goes to God. I know He alone gave me peace and strength today and I feel so blessed that he is taking such great care of my little man..

So of course I couldn't sleep last night at the hotel, I think I got maybe 2 hours of sleep! We got to All Children's just after 6am today and got hooked up to the monitors in our room. Evan's heart rate was high when we got there, in the 170's, so I got fluid and laid on my left side immediately and his heart rate came down pretty quickly. I think they started the pitocin around 730ish.. maybe later? Geez I am already forgetting lol I was 4cm dilated before we even started the induction so I did have a good "head start", plus I'm pretty sure I was already in labor this morning, my contractions were steady 4 mins apart and I had a lot of cramping last night. The DR came in and broke my water around 9 and I was 5cm dilated 100% effaced. I had already asked for the epidural because the nurse said it would take 45 minutes or so to get it in and it was all done right after my water broke. I wasn't in a lot of pain but I knew I would be soon so I'm glad I got it early lol Made for a pretty painless labor. Contractions were 1 minute apart around 10am and I was 9cm dilated already. Soon after I started feeling a lot of pressure and some pain with each contraction and at 1130ish I called the nurse in. The DR came in and said I was ready to go! Delivery was pretty painful but he came out so fast! I only pushed for like 10 minutes. The DR tried to hand him to me when he was delivered but the nursery team came and took him right away. He was crying a lot and they cleaned him up and let Scott bring him over to me :) I was only aloud to hold him for a few minutes, maybe 3 or 4, and then I had to give him back to the transport team to take him to the cardiovascular ICU (cvicu). Even though I know God was watching over him the whole time, it was still really hard to have him leave. An hour later I got moved over to a recovery room and had lunch while we waited for the cvicu to let us know we could come back in. Evan looked so precious in his little bed.. Wires were everywhere and he was just sprawled out lol The u/s tech was scanning his abdomen and his head when we got there, and then another tech came in and did his first echo. We met with the cardiologist on call right after that and he confirmed the hypoplastic left heart and said everything else looks great! He said he thinks the surgery will be Monday or Tuesday, but will know for sure on Monday. Until then, we can snuggle Evan as much as we want in his room! :) I spent most of the afternoon cuddling him. I can't believe how chubby he is! lol that little boy has rolls everywhere. I am so grateful he is that big for his surgery! He makes the cutest little noises and hates to be uncovered or cold! He loves to be bundled up tight and rocked. Oh I am just so in love!! Scott and I came back to my room and had dinner then headed back over to cuddle some more. He can wear socks and hats of our choice so we "dressed" him too. So adorable! It was really hard to leave him in his room tonight but I know He has his hands on my baby boy tonight.

Poor Scott is passed out on this tiny little 'bed' right now lol he is such a GREAT dad already and Evan already has him wrapped around his finger ;) I know I always say how amazing that man is but he has just been AMAZING today! I really could not have had a better partner today. He has been so helpful and poor guy has had to deal with way more than any dad should. I just love him to pieces :)

As for me, I feel great! I've been getting around just fine all day and had no complications during delivery. I can't believe I had a baby 12 hours ago lol

We are going to spend the rest of the week snuggling Evan as much as possible! Elli will be coming up to meet her baby brother on Saturday and I can't wait!! She is so excited that her brother is finally here. Sunday Scott and I will be spending the day at home to get some quality time in with Elli before Evan has his surgery early next week. I'll be sure to update regularly!

Lastly, THANK YOU to all of our family and friends who have been praying for Evan and our family, and supporting us in every way possible. It means so much to both of us to know that many people care about us and Evan! God doesn't make mistakes; my sweet baby boy is perfect in His eyes. He has a purpose for Evan's life and I am trusting in Him 100%. Let His will be done. I will be patient and grateful for every day I get to spend with my Evan and I can't wait to get him home..

6 more days.. :)

Time is really starting to fly by now!! Only six days until Evan is here, WOW! Still doesn't seem real yet. We had our last OB appointment on Tuesday. Evan is doing wonderful, his estimated weight was 7lbs 9oz, big boy! I'm still sticking with my guess of 7lbs14oz, we will see. The OB was explaining the heart defect to the ultrasound tech and pointed out some things to her, and then said something along the lines of "the best prognosis you can have with hypoplastic left heart..". Made me smile to hear that. I'm still 1/3 of the way done dilating so I'm very glad I will have a headstart on Wednesday lol I'm thinking I will progress quickly, we'll see! Scott and I have decided to stay the night in a hotel in St Pete on Tuesday, that way we can sleep a little longer since we have to be at the hospital at 6 AM. This will probably be my last update until we have Evan, it's just a waiting game now, but I will make sure to update (when I feel up to it) after Evan is born. And just a FYI.. neither Scott or I will have our phones turned on until after Evan is born and things are 'settled' so you may go awhile without hearing an update; just assume everything is ok! We will be going thru a lot on Wednesday and your patience and understanding will be appreciated..

We are still praying for a miracle for our sweet baby boy.. So you keep praying too! I know God has amazing plans for our son and we are trusting in him to keep Evan safe. <3

Hope everyone had a great Thanksgiving!

Update :)

Today we had our 36 week OB appt and the last fetal echo of Evan's heart until he is born. It's been quite an interesting day! Our OB appt was this morning. The nurse checked my cervix and turns out I am 3cm dilated and 50% effaced. I have been having some pretty strong contractions the last two days and feeling a lot of pressure so I knew something was going on, but I wasn't expecting to be that dilated! Good thing is I am already 1/3 of the way done with the "labor" lol Gives us a good head start for when I'm induced. We had our weekly u/s before we met with the DR and everything is great still, Evan was being lazy and didn't want to move for once so we had to wait a while to get fetal movement. We met with the DR and she was concerned that I had dilated this much already, and doesn't want me to go into active labor just yet so she prescribed me Procardia. It's a med for chest pain, lol, but apparently they use it to stop contractions/labor. So I'm assuming I will be on that for another 2 weeks until my induction date, I'm going to find out more on Tuesday at our next appointment. Luckily I wasn't put on bedrest, that would suck, she just told me to "take it easy" and don't exert myself. We are very, very lucky we did not end up in labor and delivery this morning! I would have been disappointed too, I'm really looking forward to our Thanksgiving dinner this Saturday!!

After the OB we headed to All Children's for the fetal echo. Evan is 6 pounds, 5 ounces and doing great! Cardiologist said he looks to be very healthy, with the exception of the HLHS of course. He scored another '10' on his cardiac profile. I am very glad to report there are no leaky valves or other complications :) The cardiologist says this is a very straight forward case of HLHS. It's kind of bittersweet.. He also said there shouldn't be a problem with us being able to hold Evan for 30 minutes or so right after he's born before they start the IV.. YAY!! :) Best news I've heard in a long time. I know it doesn't seem like a lot but I was expecting maybe a couple of minutes so it's a lot to me! Hopefully the DRs and nurses will go along with that time frame though!

So that's where we stand right now. We won't be seen again until Tuesday, hopefully Evan can hang out for 13 more days, but I'm not gonna lie I am very very anxious to meet our little boy <3

18 more days!

December 1st is our "official" induction date. I feel like the last 7 weeks have gone by so fast! We are prepared to bring Evan home; his nursery is complete, but we haven't even begun to prepare for our stay at the hospital. Well wait, I take that back, I did call the Ronald McDonald house in St. Pete and reserve a room for our 4-6 week expected stay. It seems so surreal that in less than 3 weeks Evan is going to be here and this journey will "officially" begin. I have mentally prepared myself as much as I can but I still feel clueless about the whole situation. I don't think reality will sink in until after Evan's born and 24 hours later we will still be at the very beginning of our hospital stay instead of loading up in the car to bring him home... I'm still trying to stay strong, but it's so hard to trust in the Lord that everything is going to be ok. I pray for peace all the time and I feel like God has answered that prayer but I still can't help but wonder if the first time I hold Evan will also be the last..

This Thursday we have my 36 week OB appointment and our 4th and final Fetal Echo. I will make sure to update after those appointments.. Til then, keep Evan in your prayers please!

Good News!

Yesterday we got some AWESOME news... I get to keep my job!! I had put in a request to work 20 hours a week in the office and the other 20 hours at home and it got approved! I will still be out for 8 weeks while Evan has his surgery and is recovering. I am just so grateful and blessed to work for such an understanding and compassionate Agency! Now I will be able to stay home with Evan while Scott is at work and then I can come to work when Scott is home. :)

Just makes you realize he really does have a purpose for everything in your life. If I had not gotten this promotion a few months ago, there's no way I would have been able to work from home and I would have had to quit for sure. God is Great!

Cardiology Appt

We had another cardiology appointment today. They did another fetal echo and the Cardiologist says everything looks the same as last time, thank God. No leaky valves and nothing has changed. We will be going back one more time for another fetal echo before Evan makes his arrival, again just to make sure nothing has changed before he's born.


Don't get me wrong, I am SO grateful we found out about Evan's heart before he's born, but it's so frustrating and depressing to go to all of these appointments. It sounds selfish but I don't like having to take off a whole day or a half of day of work to drive over an hour away to be poked and prodded at, and be reminded that there is something seriously wrong.. Every appointment makes this whole situation feel that much more "real". I just can't wait for Evan to get here and recover from surgery and come home...

Another long day..

Scott & I spent the day at All Children's over in St. Petersburg. We had 3 different appointments and it was overwhelming to say the least. I had my first OB appointment with the DR that will be delivering Evan. The OB office was definitely not on the same page as everyone else and I'm not really sure where the ball was dropped but they have it all sorted out now. Nobody really knew why I was there, which was annoying of course. Turns out today was the "consult" appointment and they did an ultrasound then we talked to the DR briefly. She told us she would like to deliver Evan at 39 weeks, which will be December 5, though I'm almost positive he is not going to stay in there that long! We will see if she still wants to let us go that long at the next appointment. Evan weighed 4lbs 15oz today.. Just under 5 pounds! He is huge, lol the DR and tech kept referring to his "fat" rolls and his chubby cheeks.. Atleast he will be nice and big for his surgery! :) We will now be having weekly visits to the OB until we deliver. I know it has to be that way but it sucks because I have to take half a day off of work to get down there and back.. Our next appointment was with the surgeon, Dr. Chai. He seemed very knowledgeable and spent a lot of time making sure we understood exactly what was going to happen during the first surgery. He said the success rate for a baby with HLHS and no other complications (like Evan) is about 90%. The surgery should take about 4 hours and will be performed when Evan is 3-4 days old. Also said we should expect about a month in the hospital with him after the surgery. They have to make sure he is breathing good before he goes home and he said the reason for the extended stay is because the baby will need to learn how to eat since he won't have that opportunity right after birth. He is on a team of 3 pedi cardio surgeons and they do about 40 Norwood procedures a year. Dr Chai said he does the most out of the three. Overall he seemed pretty confident that Evan will be just fine thru the whole thing.. Our last appointment was with the perinatal nurse coordinator, Sandra. She gave us a tour of the labor and delivery rooms, and the cardiovascular intensive care unit (CVICU) where Evan will be staying for the entire time he is at the hospital. We will be able to hold Evan right after birth for a few minutes but then they will need to start an IV and he will be moved immediately to the CVICU and Scott will go with him while I am recovering. I hate not being able to go with him too, and it will probably take a lot of convincing so I don't discharge myself against medical advise lol It was SO HARD to see all of the little babies in the CVICU. They have so many monitors and wires going everywhere, it was definitely more than I was expecting to see and I had a hard time handling it.. I was ready to go right then! Moving on, while Evan's in the CVICU we will be able to sleep in the room with him, before and after surgery, and he can have visitors (I'll add visitor info at the end of the post). Unfortunately Elli will only be able to visit for 15 minutes at a time.. :(  We also went and talked to the manager of the Ronald McDonald house in the hospital and she gave us a lot of info, we will probably be staying at one of the houses over there for the duration of Evan's stay, just so we have somewhere to "get away" from all of the craziness and take some mental breaks that I'm sure we will need.. There was a lot of information thrown at us today and we still don't feel any more prepared; but atleast we have a general idea of where to go and what to expect.

OK RULES FOR VISITORS! Most of these are All Children's rules, not ours!!
- Only 2 non-parent visitors can be in the room at a time.
- NO children other than siblings can visit.
- EVERYONE must see the care nurse prior to entering the room to receive "clearance" to enter.. I'm pretty sure they are going to make sure you don't have a fever, or have been in contact with anyone who has been sick recently.
- You may not send FLOWERS, LATEX Balloons, or wear PERFUME/COLOGNE
- We are requesting everybody except for our immediate family respect our wish to not have any visitors until Evan has had his surgery and has had his chest closed for a few days. We do not get the chance to bond with him like most parents do and the time before and immediately after his surgery will be very, very precious to us. It will also be chaotic and the less stress we have to worry about, the better. Please do not be offended and respect this decision.

We go back to the OB next week and back to see the pediatric cardiologist tomorrow afternoon so I will update again after that..

Keep praying for Evan! :)

Angry.

I'm trying to prepare for tomorrow's appointments with the OB and the Surgeon and I can't help but get upset. I am so MAD. I HATE that we are having to go thru this. I HATE reading posts on message boards that all these families are so freaking excited to bring their babies home in 7 weeks. UGH I am so MAD I could scream right now! I HATE that Elli won't be able to hold her little brother for weeks; that we won't be able to introduce our son to the "real world" for weeks, actually months since he will be so fragile and I will be to scared to take him anywhere. This IS NOT FAIR! I'm trying so hard to stay positive and trust in the Lord that everything is going to be ok but its easier said than done. I feel so helpless. I can't do anything but freaking sit here and wait for Evan to be born, just so he can be whisked away and handed over to someone to cut his chest open. I just dont understand why he will have to suffer to survive. WHY!!!!!!!!

Time is just flying by!

I can't believe we are already at the 8 month mark! Less than 8 weeks til we get to meet our baby boy!!! :)

We have four appointments next week. Luckily 3 are in one day at the main All Children's hospital in St Pete. Monday the 25th I have my first OB appt. over there, and hopfully (fingers crossed) we find out what day I'll be induced. Then we are meeting with the surgeon, Dr. Chai. And lastly we will have our tour of the hospital. It's going to be a long day! Tuesday the 26th we will go to All Children's in Tampa for our next fetal echo.

We've been busy with work and preparing for Halloween/Elli's 5th Birthday Party! She has grown up so quick!!

I will update again after the appointments..

63 Days.

or 9 weeks. That's how much longer we have until Evan's "due" date. (Which is still up in the air since we are supposed to be delivering a little early!) I can't believe how fast this pregnancy has flown by! Geez I can't wait to see his cute little face! :) And as much as I want to keep Evan "safe" for as long as possible, I also can't wait to get him out lol His kicks have been so painful lately!

Now for an update.. I spoke to the Cardiology coordinator on Friday and she has sent all of our information over to a coordinator at All Children's. She is going to be taking care of transferring my care from Lakeland to All Children's for the remainder of the pregnancy, setting up a tour of the hospital, and scheduling a meeting with the surgeon. The OBGYN will be deciding how soon we will be delivering, so I can't wait for my appt.. I just want to have a definite date! I really feel so blessed that Evan will be cared for at All Childrens over in St. Pete.. Everyone we have dealt with over there so far has been just so compassionate and understanding. It's so much easier to feel at ease (or somewhat at ease) when you trust the Doctors, nurses, etc.

It really amazes me how much peace God has blessed me with over the past few days. I have so much faith and confidence that Evan's going to be just fine and that's very unlike me.. I tend to only be able to see the worst in questionable situations. I'm definitely not prepared mentally for what's to come after Evan's born. I don't like thinking about not being able to hold Evan and bond with him, nurse him, bring him home to meet his big sister and the rest of his family.. It's just sad. But I am staying strong, I think Scott is too.. It's going to be extremely hard to see Evan in the hospital while he recovers from the first surgery, but we know we are going to have to stay strong for him and keep believing for a miracle. I really just can't WAIT to get our little man home!

So that's where we are. Just waiting and believing. Please, please keep on praying for our precious Evan. We'll update again later this week when we get more info from All Childrens.

One week down..

Yesterday we had our second appt. with the cardiologist at All Childrens. First we had an hour long echo, the sonographer and coordinator, Aleta, is phenomenal. She took her time and explained everything she was looking at to Scott & I and even gave us a few shots of his cute little face! :) Right after the echo we met with Dr. Nardell and she basically gave us an HLHS 101 class. She had several pictures for us and explained exactly why Evan’s heart can’t function the way it is, and then went thru the basics of each of the three surgeries. She also confirmed the only anatomy problem with the heart is the left ventricle, and closed mitral valve (basically no other heart complications except hypoplastic left heart). Scott & I both really like her; she took her time and answered all of the questions we had. So, on to the information we got yesterday.. Evan’s cardiac profile right now is a 10 out of 10. Basically his heart is working great right now (that, of course, all changes once he’s born). The head of pediatric surgery at All Children’s, Dr. Q, will be performing Evan’s surgery 5-7 days or so after he’s born. We will meet with him a few weeks before the baby’s born.. The first surgery is called the Norwood. It’s the riskiest surgery but Dr. Nardell said the survival rate at All Childrens is 85-90%!! The purpose of the surgery is to give the heart a more permanent solution to mimicking the blood circulation the way it was in the womb. This done through a BT shunt, which will allow blood to go from the aortic side to the lungs. The main part of the surgery is changing the Pulmonary Artery to be part of the small aorta. This has to be done because Evan’s is so small it’s not effective. This procedure will still require the right ventricle to function for itself and the left ventricle.. Recovery time in the hospital will be 4-6 weeks. Luckily, All Children’s recovery rooms are big enough to accommodate parents too so Scott & I can stay with him at all times. He won’t be able to come home on oxygen, but there’s a possibility of him coming home with a feeding tube through his stomach if there’s a feeding issue (praying he has no problems!). The “riskiest” time for Evan will be between the first and second surgery. The second surgery will be done closer to when he’s 6 months old. It’s called the Glen procedure. During the Glen, they will remove the BT shunt and make a bigger connection from the Superior Vena Cava (SVC) to the pulmonary artery. Recovery time is 1-2 weeks and the purpose of the surgery is to let more blood flow to the upper body and replace the BT shunt (it doesn’t grow with the baby so it will be too small to keep for forever). Evan will be fine (if everything goes well) and can start a more “normal” baby routine after the second surgery and until he has the 3^rd surgery. The 3^rd surgery is called the Fontan and will be done between 2-3 years old. The purpose of this surgery is to connect the IVC to the pulmonary artery to allow for more blood flow to the lower extremities. The right ventricle will always pump blood for both sides, but these procedures relieve the work load for the right ventricle. Make sense? Probably not.. lol I took notes while we were talking and Dr. Nardell gave us the diagrams which helps a lot to understand what’s going to happen.  Evan won’t be able to eat before the first surgery or right after surgery, poor little guy, and then they will start introducing breast milk a little at a time through a feeding tube and gradually move on to a bottle. He may even be able to nurse! :) It’s a lot of information to take in but Scott & I both feel really good about this and we still feel so blessed to be able to give Evan a chance at a normal life, no matter what sacrifices we have to make.

So that brings me to our next bit of “big” news. We talked a lot about it and have decided I am going to quit my job and stay home full time with Evan. Now if you know me, you know that’s a HUGE deal. I love my career and a few months ago I got promoted and it’s going to be so hard to leave it, but we are willing to do whatever we have to in order to be there for Evan. We’ll have to take the baby to Dr. appts weekly, biweekly, then monthly for a while and it would be difficult to try and rearrange schedules to make sure one of us is there with him. It will be a lot less stressful on both of us knowing I don’t have to worry about taking time off of work. We both will also feel 100x more comfortable knowing I’m there with him. I don’t think we would ever be able to get over it if something extreme happened and neither of us was there with our little man. Hopefully we won’t be as stressed when Evan comes home :) Yes, we will still be staying in our house and Elli will still be going to Pre-K. Scott has already given up his big truck and traded it in for a smaller, more fuel efficient truck. (Evan you are blessed to have such an awesome Daddy..) We’ve also decided we will not be drinking alcohol anymore. (not that I’ve been able to in the last 7 months anyway lol) Evan won’t be able to drink/smoke when he gets older and we want to set an example for him. Who knows, maybe Elli will follow our example too when she gets older.

We are now just waiting to hear back from the coordinator to see which OB I will be seeing for the rest of my pregnancy and waiting to be set up with a social worker at All Childrens to help answer questions we have on insurance. As you all know, there’s no way we will be going back to my current OB in Lakeland.. OH I almost forgot, the preliminary results of the amniocentesis came back and everything is normal. Unfortunately, the hospital last week sent the results to my Lakeland OB and they never bothered to call me with the results, go figure!! Our next fetal echo is in 3 weeks back at All Childrens.

Keep on praying for our sweet baby boy. We should know here soon when we will be induced. Once we find out the date and information on how many people can visit, etc. we will let everyone know.