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.

Encouragement

Trust in the Lord with all your heart & lean not in your own understanding. In all your ways acknowledge Him and he will direct your path.
Proverbs 3:5 - 6

Yesterday was a good day, a GREAT day actually. I feel like God really followed through with some encouragement for Scott and I. We met a family through a friend (Brian I will be forever greatful for you introducing us..) who's son basically has the same heart problem Evan has. His was a little different but he still had to go through the 3 surgeries. First let me just say, you would never in a million years know this little boy has a heart defect just by looking at him. He's almost four and just full of life. I watched him play with Elli around the fire station for over an hour and he was so spunky and energetic; a typical boy. His parents were so open with us and shared a lot of great information. But their son is just a living testimony of the miracles God can work in your life. Scott and I both felt such a weight lifted off our shoulders after talking with them. We know it's still going to be a very rocky road to Evan's complete recovery, but now that we have seen this little miracle with our own eyes it's a lot easier to trust that the Lord will be with Evan and us every step of the way.. Scott and I are still trying to figure out how we are going to manage not just a new baby, but a sick baby, and still keep a peaceful balance at home. We are both more than willing to do whatever it takes. We haven't even known about Evan's defect (that's such an ugly word, I wish I could think of something else to call it!) for a week yet but it has been such a humbling experience already. Two weeks ago all I could think about was Christmas and what I wanted, what I was getting Scott and Elli, and now it just seems completely insignificent. It's a shame that it takes a life changing event like this to really open your eyes to what's truly important in life. I still don't know why this is happening to us and our sweet baby boy, but I know now there's a reason; God has a BIG purpose for Evan's life.. Keep praying for him, and keep reaching out to others to pray for him too! Less than 10 weeks to go before we meet our little angel :)

<3 Natasha

Although I've never known you, I can't imagine life without you..

Evan; Meaning: "God is Gracious", "Young Warrior"

First we just want to let everyone know we appreciate all of your prayers and kind words more than you know. We were completely overwhelmed with the number of family and friends that are reaching out to help us in any way they can. THANK YOU! Evan is going to need them for a while so keep on praying for him! 

It's been a rough week. It's hard to focus on anything other than our sweet baby boy.. We have our appointment at All Children's on Tuesday at 2:30 for another fetal echo (ultrasound of the baby's heart) and to meet with our pediatric cardiologist, Dr. Nardell. I keep a notepad by my desk and I'm keeping a list of all the questions I want answered. We've also stopped searching the internet for answers. While there are many success stories, there are equally as many stories of babies who have gotten their Angel wings as well.. We are just trying to trust in the Lord that everything is going to be ok and wait to get our answers from Dr. Nardell. I'm at a lost for words for how supportive Scott has been for me this week. Amazing doesn't even come close. I feel guilty for leaning on him so much and relying on him so much when he is going through the same pain. But he has been by my side every second we are home together. And when I'm at work, he does his best to make sure I'm ok and has such encouraging words.. I can't imagine going through this with anyone else. I am so blessed to have him in my life. Last night was tough. I questioned our decision to go through with the surgeries, wondering if it was the right choice to make, or if it is really our choice to make. If God made our little man this way, why are we going to try to change him? But God also made all of these surgeries possible; He blessed the doctor's with the knowledge and skills to make these surgeries a success, and give these babies another chance at life. I feel like it's so conflicting! I feel like we are being selfish to put our son through these painful surgeries just to keep him here with us. Life on Earth is temporary. Our "real" home is in Heaven, is that where he belongs? I'm not being negative, I do believe in miracles and healing, but I can't help but wonder.. I don't feel right knowing Evan's heart fix is only temporary, and he will need a heart transplant later in life. What if Evan's our age, married with kids, and his heart stops functioning and he needs a transplant? I can't help but feel an overwhelming sadness knowing he could leave his children without a father.. 

We talked a lot last night about how we are going to manage caring for Evan after he's home. We have a lot of options, and we are going to have to make a lot of sacrifices, but it's only temporary and will be completely worth it in the end. As long as our son is healthy and home with us we are willing to do whatever it takes. Again, we are waiting to talk to Dr. Nardell and hopefully a hospital social worker before we make any definite decisions.

We have also decided to transfer my OB care to another doctor, even though a high risk OB will be delivering Evan at All Children's. For those of you that don't know, we believe our OBGYN office in Lakeland was negligent in our care. The ultrasound technician documented on the report for our 20 week ultrasound that a follow up ultrasound in two weeks was recommended because of the baby's heart, but that information somehow did not get to us. We aren't sure if the Doctor didn't review it or what the miscommunication was, but it was a HUGE mistake. Had we not decided to pay and have a 4D ultrasound last week, we would have not known Evan was sick and would have delivered at LRMC, only to either bring home a very sick baby or have him ripped away from us and flown to a children's hospital. I have already spoken to the Office Administrator to make a formal complaint and they are investigating the situation. Scott & I are still debating whether or not we will pursue any legal action. I, of course, would like to rip them to pieces, in whatever way I can. They put my child's life at risk and I will not let it go without fighting to make sure that never happens to another family at that office. 

We will make sure to update the blog after Tuesday's appointment, and keep updating whenever we get any news. While we do appreciate everyone's concerns, it's hard to keep up with the phone calls and emails, it's easier if you check here first for an update. We are trying to keep everyone posted! 

<3 Natasha

My sweet baby Evan,

You've been SO active the last couple days, it's hard to believe you only have half of your little heart. Your daddy and I watch you kick and stretch in my belly and it looks like you're trying so hard to get out! :) We already know you are going to be such a fighter and strong little man.. You have no idea how excited we are to meet you! We will cherish every single moment we spend with you, even when you keep us up all night. ;) Daddy and I were joking last night that it's going to be a race to see who can get out of bed first lol Your daddy came up with this the other day and we just want you to know that although we've never known you, we can't imagine life without you. 

We both love you so much already, keep hanging in there sweetheart..