Knowledge is not power.

You know it's been too long since your last update when you have to go back and read your last post to see where you left off! I apologize for my lack of attentiveness to my blog.. Just been having too much fun w/ my family ;)

We've had many changes in the past few months. Evan passed his swallow study on March 3!! God healed his vocal cord, I knew it, just had to wait and prove it to everyone with this test! He has since been eating like a champ! This little boy loves loves loves to eat. Evan started off on 26 calorie formula, got moved down to 24 calorie formula, and is now on regular ol' calorie formula! He was gaining too much weight! Evan takes between 5-6oz at a time now, he's such a champ. :o) We've started on solids as well. He was 15lbs 11oz today.

I can't even begin to describe what an amazing little boy Evan is. He loves to smile! He loves to cuddle with mom & dad. Just seeing his chubby cheeked face warms my heart.. I enjoy every single second I spend with him! Scott & I just completely love & adore him!

When I last updated, we thought Evan's surgery was going to be moved up since his O2 sats were lower than normal, but his sats went back to averaging in the 80's and the next Cardio appt. was normal. This past Tuesday Evan had a Cardio appt. and his sats were low. His cardiologist ordered an echo and said everything looked fine. She then called Thursday and scheduled his pre-Glenn surgery heart cath for the following Thursday, 4/14..

Crap. I hate this.. It's not like the upcoming surgery was unexpected; it's the exact opposite. I have known from day one that Evan would need 3 surgeries to survive. But knowing does not make this easier to handle. Knowledge is not power in my situation. I assumed the first surgery would be the hardest. I assumed the next two would be easier because I "know" what to expect. How ignorant of me to assume this would ever get easier! I DO NOT WANT TO PUT MY BABY THRU THIS! It's not fair. IT IS NOT FAIR! I want to take him and run. I want to hold Evan and never let him go. I hate this disease..

Keep our family in your prayers this week. Evan's cath is scheduled for 10AM on Thursday. I will keep everyone updated.

3 months old

Our little warrior is 3 months old today! He's getting so big, he weighs over 14 pounds :o) Today Evan had a routine cardiology appointment. He got weighed, blood pressure checked in each arm and leg, had an EKG done, and an echo done. His cardiologist said everything looks to be functioning great, for now.. He is gaining so much weight and getting so big quick, meaning he is about to outgrow his shunt. His O2 sats were in the high 70's today, and they are usually in the 80's. She said this is a sign of the second surgery getting closer. She's very happy with Evan's progress, but would like to see us back in 2 weeks instead of 3. We will do another echo and EKG, and most likely schedule his pre-surgery heart cath and pre-surgery appt with Dr. Chai. Looks like we might be leaning closer to having the second surgery at the end of March/beginning of April...

I've known all along that once we were home from the Norwood surgery it would only be temporary. I knew we would have only 3-5 months at home before having to return for a second surgery. But I do not like that it's quickly becoming a reality. When we are home, Evan's a normal baby. He acts like a normal baby, looks like one, etc. He smiles, and laughs, and yells.. I don't want to sign a consent form to have his chest opened again. I don't want to stop at the doors to the surgical unit and say my "See you soon's".. But I know he will be in God's hands and He will take care of my little man..

I would really like to clear the air for everyone who may not understand our situation completely.. Evan is NOT a normal baby. Getting even a common cold or tummy virus right now would put him in the hospital, overnight, potentially for days. We, along with every other parent of a heart baby waiting for their second surgery, have been told to keep him healthy, away from school aged kids, sick people, people who have been in contact with sick people, etc. etc. I HATE BEING HOME BOUND! But I will do it/am doing it to keep my little guy healthy. He has not even had the slightest cough yet, and this is all thanks to Scott and I being so protective over him, and not taking him to crowded places, or letting people hold him outside our home. I can't wait until Evan has recovered from his Glenn so we can take him to my parent's house, and Scott's parent's house, and trips outside the house.. but for right now, he's staying home and away from germs. I'm sorry if you are offended that you have not had the opportunity to meet our little miracle, but I really hope  you try to understand why, and have the patience to wait until he is stable enough to meet you..

Thursday Evan will go have his second swallow study. Please please please pray that he passes. I want his feeding tube out forever! He's such a talker, I know his little vocal cord has been healed.. I'll make sure I update Thursday <3

I know, I'm a slacker.

It's been two weeks since I've updated, wow! Time is flying..

Evan is doing wonderful! He is such a good baby and loves to be cuddled! We are still adjusting to having him home. He had a cardiology appointment last week and is still doing great. Next appointment is Thursday. Evan has gained almost a whole kilo since we've been home... LOL He is such a big boy! By the end of the week he will be 11 pounds (5 kilos). That's a gain of over 2 pounds.. in a little over two weeks.. I feel like that's excessive, but I didn't track weight gain for Elli like who do with Evan so I have no idea. We will see what they say Thursday, maybe they will stop the extra calories.

I still worry about Evan all day long. Always checking to make sure his color looks the same, making sure he is breathing normally, etc.. I trust God is with him so my faith definitely gives me some peace, but it's so hard not knowing if your baby will make it to the next surgery..

I promise I will try to update more often, this is the first time I've had a couple of minutes without the baby in my arms..! Keep praying for Evan <3

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... :(