Halloween Preview

It is an almost definite thing that Ethan will not be home for Halloween. So, we took some really good pictures of him in his costume today so that he will have pictures in his costume even if he gets his surgery and is in CVICU for Halloween. Aren't they precious...what a ferocious dragon...but please...try not to be too scared.

We had a really good day today. Mom and Dad got me out of the hospital for a while and Richard stayed with Ethan. I needed to get out so bad. 17 days in the hospital is way too much. Recharged and ready for another week or so...

AAAHHHHHHHRRRRRGGGGG!!!!!!

We got bumped at 3 am!!! An emergency came through that was ina worse situation than Ethan so that baby got our spot. While I am frustrated, I know that if I was the other momma I would want the baby that got bumped momma to stay positive. So, Richard is going to stay with Ethan for a few minutes this morning and catch a nap and I am going to leave the hospital for the first time (except for a 30 minute run to the grocery store a week ago) in 17 days. Thank you to everyone. We're back on standby...

Tomorrow is D-Day

Well...tomorrow is the day for Ethan's first open heart surgery. I met with Dr. Fraser this evening to go over the goals for the surgery. He will make a new connection between the pulmonary vein confluence that is bigger and will alleviate a lot of the worry of the common vein squirreling all over the place. They will also look and see (after they are in the heart) if they can perform a bidirectional glenn shunt. They will have to measure a lot of Ethan's anatomy after surgery in underway so they will have to stop circulation while he is on bypass a few times which ups the risk of complications during surgery, but it has to be done. We are praying that everything goes smoothly and that the doctor's hands remain calm. We pray that the knowledge of our surgical team be at the forfront of their minds that they can perform surgery to the best of their ability and experience. I pray that my baby doesn't suffer brain damage from the bypass and circulation stops. I just want this to be over. Thank you to all of you that have prayed for my baby and that continue to pray for him. He needs them now just as much as he needed them before birth..if not more. I'll try to keep up the blog during the day tomorrow. It will help with my sanity. For right now, I'm taking it one breath at a time.

Still waiting

We are still waiting for an opening in the surgery schedule. A transplant became available on Friday so that bumped everyone back a bit. We will be able to be in surgery at the earliest next Tuesday, but the doctors constantly tell us to not be surprised if we are bumped back later in the week or even the beginning of the next week. It's getting long but we are used to the idea of not going anywhere. We also decided that if he still has the IV in his head for Halloween that we are going to paint the IV cover grey and get a copy of the Jaws theme music to carry around when I get to take him for a walk in the halls during the day.

I got a mobile from the playroom today for his crib. Kind of made me sad. Around here, you aren't considered a "resident" until there is a hospital owned mobile hanging over your bed. He loves it though and it gives momma a break from holding him when he is fussy...he just looks and the mobile and starts smiling and cooing. You can't help but love the little turkey...just wish he didn't hav eto go through this. A mom I talked to today told me something that didn't make sense to me until I thought about it for a while. She said, "Heart kids carry the scar, but the moms feel all of the pain". While that is not true of the physical pain of open heart surgery, it is completely true of the inner pain that you feel when your child is going through this. I do feel blessed that he will have no memory of going through any of this. When he is a "big kid", he will have his scar, but the pain will be in my memory not his. I wouldn't have it any other way.

Cath...

Cath was cancelled at 11:30. Dr. Fraser thought it unneccesary and feels comfortable taking him into surgery asap without the cath. We don't have a surgery date yet. You will know as soon as we do!!!

Cath tomorrow

After the IV was put in and he had calmed down. He loves the swing, but he still looks a little worried

before the IV was put in...notice how happy he is...

Well...we are going to have the cath procedure tomorrow. There was a cancellation so Ethan is the second case of the day. He will be in the procedure between 10 and noon. He was placed on fortified milk this morning to "fatten him up" for surgery so he is allowed to eat that until 2 am, regular breastmilk until 4am, pedialyte until 6 am and then they will start IV fluids. His IV closed last night (of course) so they had to start another IV today. They tried both feet with no success so he has an IV in his head (his hands and arms did not present a good enough vein even to try to catch today). So we're starting Halloween early by dressing up like Frankenstein (notice my humor to keep that positive outlook going). They estimate that his cath will last 3-4 hours and that he will be in recovery for at least that long. So, long day tomorrow...

The cath will measure the pressures in his heart and give the surgeons a better idea of what types of surgery Ethan will be eligible for. We are still hopeful for a bi-ventricular repair, but we will have to wait and see. We have faith that whatever surgery we have it will be what is best for Ethan.

Nolan and Ethan updates

Nolan had his appointments with Ears, Nose, Throat (ENT) and audiology this morning. ENT recommends tubes in his ears and removal of his adnoids (spelling) so we will be doing that in two weeks on the 22nd. He is on antibiotics because his left ear is still infected. His audiology visit determined that he has hearing loss in his left ear most likely from the ear infection. They will do another hearing screen after his tubes have been in place for a few weeks...on Nov 10th.

In the meantime, this evening the got a urine sample from Ethan so they can check for infection pre-op. His IV is still flushing so I am happy...they don't have to stick him again as long as that is open. They will do a cath on him as I mentioned previously either Fri or early next week. We will have surgery most likely mid to late next week. I'm not ready for this. I don't think you can be ready for this. The urine sample caught me by surprise. I knew that they needed one but I didn't know it was coming down to this close.

I am tired of everything being up in the air. I hate this waiting game. I know that we are working around pre-op procedures and also surgery schedules, but I'm almost ready for this to just be over. I am relishing every minute I'm getting to spend with Ethan because I can't help but think that I won't get to snuggle with him like he likes for a while...He likes to be held chest to chest snuggled up on your shoulder. With a sternotomy, he will not like that for a while and might not again...it might irritate him too much. I just want a magic pill...

No one should have to go through this...especially a baby who has done nothing to cause such great amounts of heart disease...