Tuesday, July 31, 2012

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.

Wednesday, July 25, 2012

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!

Monday, July 23, 2012

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!

Saturday, July 21, 2012

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?


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.

Thursday, July 19, 2012

Echo today

William had an echo today. Everything looks "the same," which is good. We have been instructed just to stay the course. He will have a cath within the next month at Cincinnati Children's, which will allow them to determine when his Glenn will be. He is gaining weight so well, we are sure it will be sooner rather than later. Will was a good sport today, despite the appointment being right during lunch time!

Tuesday, Will's ng tube kept clogging so we pulled it. We left it out over night to see how he did but he just wasn't ready, so yesterday morning we dropped a new one. I hate doing that because he screams and obviously feels bad. Unfortunately it's just something I have to do.

Tuesday, July 17, 2012


Every morning, I wake William up at 7:30 to eat breakfast. I look forward to him opening his eyes and smiling at me, and spending the morning just the two of us.

Do you see the problem here?

I wake him up to eat.

People have asked me why we can't feed on demand, or why he can't breast feed.

Will cannot feed on demand because right now his need to sleep is higher than his need to eat. He needs more nutrition than the average baby, and is on a strict schedule. When he is awake before a meal time, it is clear that he is hungry. He will cry or fuss until the bottle hits his mouth. Unfortunately, if he is asleep, he does not wake up to eat. That part is up to us. We either have to wake him up, or gavage his whole meal while he sleeps. He often won't even wake up for the pre-meal diaper change. He needs the sleep because his heart is working double time.

In addition to this, he is not always able to stay awake to finish a whole bottle. Even if he is completely alert at the beginning, the work out he receives from eating knocks him out, often about halfway through his bottle.

This is partially why he is not able to breastfeed, as well. He simply does not have the energy to drink enough to sustain himself and gain weight. On top of that, the bottles he gets are fortified with extra calories to assist with the weight gain.

We have been working diligently on eating, and Will is doing so well. He had a few days where he was finishing all of his bottles, and we were going to be able to try taking out his feeding tube after a week of this. On day five, he started regressing. He went back to eating only 50-75% of his bottles.

I'll admit I was disappointed, but obviously William just isn't ready. He needs, and also deserves more time. We will give him all the time he needs. If he needs the tube until his second surgery provides relief to his heart,we will gladly continue the path we are on. Encouraging, but not pushing. He will get his tube out in his own good time. We will continue to be patient and do whatever it takes to help him thrive the way he has been.

Tuesday, July 10, 2012

Moving right along

One of the first things the doctors told us after Will's diagnosis was that we could expect a lot of developmental delays. Heart babies tend to take a lot longer to reach milestones.

One of the first things I learned after meeting Will, was that you can't tell him what he can and can't do.

At seven weeks, he is developmentally advanced. He has been smiling since four weeks, he holds his head steady and today he did a "baby push up" during tummy time. Our sweet boy amazes me more and more every day.

And did I mention he has taken his last three meals entirely by bottle?

Yes, I am bragging.

He had a chest X-ray last week, and everything looks great. On the X-ray you can see his tube, and the wires holding his sternum shut. So strange! Dr. Kavanaugh is trying to schedule his cath for August/september. I am not sure if I feel ready to hand him over to the doctors again, but I will be so glad to get the Glenn over with.

He is 9 1/2 lbs now. He needs to be about 11-12 for the Glenn.

Such a big, strong boy... He makes his parents so proud and happy every day!

Friday, July 6, 2012


William finished a whole bottle! We are thrilled!
He still isn't taking enough orally on a consistent basis, but it's progress!

Wednesday, July 4, 2012

Prayers, please

Our family has been, and continues to be so blessed by William. We were fortunate to watch our sweet boy breeze through the most complicated pediatric surgery and recover quicker than expected. We were amazed at how soon we were able to bring him home. We enjoy and appreciate every snuggle, every kiss, every cry, every poopy diaper. Our son is in the midst of conquering an often fatal heart defect. He is showing resilience and strength that one could hardly expect from an adult, and he is just an infant. We are blessed. We are lucky. We are thankful.

We still have a long way to go.

But today I ask for prayers for families who are hurting. For those who despair. For the heart warriors who remain in the hospital. And for those who have gone to heaven to become angels. It can not be put into words what it is like to fear for your child's life. To be unsure if they will live or die. Jared and I still face this every day. I ask you to pray for peace. Pray for hope. Pray for reasons to laugh and rejoice. Pray for miracles.

After you do, please hug and kiss your own babies and thank God that they are there with you. Thank Him for every breath that they take. Appreciate every moment you have with them, even when they upset you. Even when you are frustrated with them. Even when you just want one minute to yourself. This is one thing I will never forget to do, and I hope you will remember this, too.

Monday, July 2, 2012

Making it look easy

At our card appointment, Dr. Kavanaugh told Will he makes being a hypoplast look easy. She is still getting to know him but quickly learning what a super star he is.

I told her it is so easy to forget there is even anything wrong with him... She said,"Well don't do that." Another reality check. No matter how "normal" he may seem, our sweet boy is still in a critical period.

Caring for him is a balancing act, and while we usually are right where we need to be, it is easy to tip. For example, I have been pushing to get him off any meds he doesn't need to be on. We were able to lower one from three times a day, to two. He did great. So the Dr. Said we could lower to once a day, and if he did well with that, we could stop it. He didn't do well with it. We are back up to twice a day. Like I said, a balancing act. Finding the right combination of care to keep him safe, stable, and happy.

Mostly, though, Will is still doing fantastic. Today, we expect to be discharged from our home care nurse, but are trying to get home care OT and speech therapy.

Will has been very smiley lately. His smiles lights up our whole world. He is perfect.