Decrease in function

Will had another echo which showed a definite decrease in cardiac function. He will be admitted to the icu and have a cath today to try to figure out what is going on. He is sleeping peacefully now.

Hospital

We are headed into the hospital today. Hopefully they can rule everything else out and we will be home by tomorrow. Please pray for William.

Update

Thankfully, Will did not vomit again and we were able to wait to go to the cardiologist this morning.

She agreed with us that it is probably reflux, since it usually happens right before he gets his medicine and he has been fussing more during feeds. She upped his dose of Zantac (which I had asked to have done last week, but she was out of town and his substitute doctor did not want to). We are hoping that does the trick.

Her only concern is that his last echo showed a slight decrease in cardiac function (from 38% to 32%). She thinks it was just because he was upset and they didn't get good pictures, but we are probably going to get another echo next week. We are praying that it was just bad pictures.

He looks great, otherwise. Sats, blood pressure, heart rate. His heart sounds good. Actually, there was good news from the echo, too, that his pulmonary arteries looked bigger. We are really excited about that.

Because everything else is baseline for him, we are home with little concern. Meanwhile, I will just be the worried mom thinking about his next echo. Since his doctor isn't panicked, I will try to relax about it, too.

Prayer request

I am requesting extra prayers for William today. He has been having issues with emesis since Sunday. If it doesn't happen again, we will go to the clinic first thing in the morning. If it does, we will have to go today. We may be admitted, since not only are they concerned about his heart, but also about dehydration.

Any extra prayers and positive thoughts sent his way are greatly appreciated. We aren't ready for another hospital stay.

Early intervention screening

William had a screening today with early intervention to test for developmental delays. They are common with babies who spend extended time in the hospital. We weren't surprised to hear that he passed with flying colors. They give him points for meeting different milestones: smiling, opening his hands, holding his head steady, making eye contact, etc. Will needed a score of seven in order to pass. He scored a thirteen! Way to go, little man!

He will probably have another screening after his next surgery to make sure he has kept up.

As usual, we are so proud of our baby boy! He is wonderful!

2 months today!

William is two months old today! Our little man has been through a lot in such a short amount of time. He makes us so proud and happy every day!

Good morning.

I often think about January 6th. We went in to find out our baby was healthy. Instead, my worst nightmare. We were sent home with statistics that said there was a 65% chance of our long anticipated baby living to be five if he had three life saving reconstructive surgeries. Without the surgeries, he would die within days. Guaranteed.

I remember that night praying that this would be the worst day of my life. To me, that would mean never having to say good bye to William.

We met with the cardiologists. They told us we had three options. Three? Yes, three.

One was called compassionate care. We make our son comfortable, and allow him to die. No.

Two was the surgeries. At least three open heart surgeries by the age of four. The first of which being the most complicated and risky pediatric surgery there is. He may not survive even that.

What is our other option?

Termination.

They listed three things, but there was only one option. He would have the surgeries.

Part of me felt selfish. Is it fair to put him through the pain? Is it fair to launch him into a life of medical care, a life of uncertainty? He didn't get a choice. It was ours to make. Am I this desperate to have time with my son than I will risk spending it all the the hospital? He would feel a lot of pain. That was inevitable. He would experience fear at times. He would probably have delays. I would have to watch him undergo things that were unimaginable to me. And he doesn't have a chance to say no. Is that fair?

But a bigger part of me knew that he deserved any chance I could give him. I discovered others living with his condition and enjoying life. Thriving, even. I knew that would be William. As scared as I was, my heart knew that Will would succeed. Will would overcome his setbacks. Call it a mother's intuition.

I had to dig deep to find strength. But I knew what the right choice was. I filled my days with distraction. Watching tv and movies, reading, eating. I decorated his nursery. I had to, to avoid drowning in a sea of what ifs.

What if I did something to cause this? What if he can't live a normal life? What if he spends most of his life in the hospital? What if I don't get to hold him after he is born?

What if he dies?

Now, William is here. He sailed through the surgery, and is thriving during the difficult interstage period.

Some days are hard. There is a lot to worry about. A lot to do. Many appointments to go to, medicines to give. Every day we must weigh him, check his Sats, keep working on the bottle, manage his feeding tube. Often we have to retape the tube, and it hurts him to remove the tape. He hates being set on the cold scale. He hates getting his blood pressure checked, and they do it on all four limbs. He hates the echoes.

But those are just minor in our lives. We aren't ruled by our interstage monitoring. We have fun. We cuddle. We play. We read books. We go for walks. We dress him up. We take pictures. And William is happy. He smiles all the time. He enjoys life. And we enjoy him.

Our lives are so much different than Jared and I ever could have imagined. No parent pictures this when they imagine starting a family. Of course, we never thought this could happen to us. But one thing is for sure...

I wouldn't change a thing.