Post Valvuloplasty Update

Sorry for the lack of updates. This week has been crazy.

Sam was pretty tired after his procedure on Monday. He got some sugars through his IV until he was taking bottles regularly. He slept through the night well at the hospital, and he generally seemed like himself again by morning. We expected we’d be going home Tuesday afternoon.

They wanted to run a few tests on Tuesday to make sure everything looked good. First thing in the morning he had an EKG, a little blood work, and an echo. Unfortunately something didn’t look quite right on the echo. There was a little irregular blood flow in his lower aorta, below his diaphragm near the renal artery. The doctor thought it might be a small blood clot, which could be treated with blood thinners. The doctor wanted to confirm with a CT scan, but unfortunately we could not get a scan until Wednesday morning.

The next morning the CT found that it was not a blood clot causing the blood flow issues, it was an aneurysm. The doctors believe that the catheter probably brushed against the wall of the aorta here, causing a little damage. It’s a very rare complication, so Sam’s results were reviewed by the most senior doctors and surgeons on staff.

Fortunately they found the aneurysm to be very small. There is no swelling or dilation of the aorta, so there is really no risk of rupture. They believe the damage will heal on it’s own over the next several weeks.

We will continue to watch the aneurysm very closely to ensure it doesn’t worsen or develop blood clots. The aneurysm is near the renal artery, so doctors are also watching both the aorta and renal arteries.

Sam had an ultrasound on Wednesday in the early afternoon to determine if the aneurysm could be seen that way, or if follow up CT scans would be needed. Unfortunately the ultrasound was unable to give visibility to the aneurysm so we need to go back downtown for a CT in a month. Until then, we will be following up with Sam’s cardiologist weekly and monitoring his condition with EKG, echo, and with his pulses and blood pressures in all four limbs.

We are still hoping Sam will be heart healthy and not need any further interventions for the next 2-3 years. We were able to come home late Wednesday night and for now, everything is back to normal.

Balloon aortic valvuloplasty today

We’re at the hospital and ready for Sam’s procedure to begin in about an hour. They’ve already drawn blood for labs and we’ve talked with anesthesia. We are just waiting on the doctor now. 

We will post updates here throughout the day.

   
     
UPDATE #1

Sam is in recovery. The procedure was successful at improving the narrow opening of his aortic valve from severe down to moderate. There is no leakage. The doctor expects the procedure will need to be repeated in 2-3 years. Sam will also still need valve replacement at some point later in his life. 

Balloon Valvuloplasty is Scheduled

The past couple months have been wonderfully uneventful.

Sam is growing fast! He weighs over 10lbs now. He can roll from his back to his front, and his first tooth is right under the surface of his gums.

We’ve continued to follow up with his cardiologist for his unicuspid aortic valve. After our visit on June 3, she consulted with her colleagues at Lurie Childrens, and yesterday she contacted me to let me know they want to go forward with his balloon catheter procedure this month. He is scheduled for June 22.

Sam was born with a unicuspid aortic valve. It is a congenital heart defect where the valve between the heart and aorta is not formed properly. A normal valve has three leaflets, a bicuspid valve has two. Sam’s condition is the most rare, having a single leaflet and affects only about 1 in 5000 people.

It is more difficult for blood to pass through a unicuspid valve. Sam’s stenosis (narrowing) is severe, and we’ve known since his birth that he would need this procedure. His heart needs to work harder to push blood through the valve into the aorta. This can cause the left ventricle of his heart to thicken, and cause his aortic root to dilate.

At some point later in his life, Sam will need open heart surgery to replace his valve with either an artificial or a donor valve, but we hopefully have a decade or more before that surgery.

The procedure Sam will be having later this month is a Balloon Valvuloplasty.

For the procedure a catheter will be inserted, most likely through his femoral artery near his groin, and guided up toward his heart using x-ray to provide visual guidance. A small balloon at the end of the catheter will be inflated in order to help push open Sam’s aortic valve to allow for the proper amount of blood flow.

There are few risks associated with the procedure, and Sam will most likely only need to stay one night at the hospital.

The procedure will be performed by Doctor Wax, the director of Interventional Cardiology and Catheterization at Lurie Childrens. Doctor Wax’s team performs over 500 pediatric cardiac catheterizations each year.

We will continue to follow up with Sam’s cardiologist regularly, but this will hopefully be the last cardiac intervention he needs for at least a decade.

Please let us know if you have any questions.

Three months! And a cardiology update

Sam is three months old today! 7lbs 6oz and 19.3 inches. 

  

He is exhausted after a long appointment with the cardiologist today. We were there over four hours!

The aorta, where he had surgery for coarctation, is still looking good.

But, his unicuspid aortic valve may be starting to narrow. From one viewpoint it looks unchanged, but from another viewpoint it’s progressing toward the point he will need surgery.

We were nearly admitted today, but after seeking several professional opinions they decided to send us home for now. We follow up again in three weeks.

The balloon catheter procedure that Sam will need is much less invasive than his last surgery. A catheter will be inserted, probably through his leg, and pushed through to his heart. There, they will inflate a tiny balloon to open up the narrow valve. His hospital stay after the procedure should be short. 

If the balloon catheter isn’t effective or has complications Sam might need a valve replacement. He’s likely to need replacement at some point in his life. This would be a much more significant open heart surgery, so we are hoping it can be avoided for many more years. 

Aside from his heart, we are still working with physical and occupational therapy for his arms and have an evaluation coming up on Friday with Early Intervention.

We are also working to get his reflux under control. The pediatrician started him on Zantac last week and it’s making a nice difference, yay! 

We are scheduled to see lactation later this week too. Sam is getting mostly pumped milk from a bottle now and I’m hoping we can transition to nursing! He does need to have some special high calorie formula a few times every day to help with weight gain and certain micronutrients that preemies can’t get from breast milk, but I’d like to start nursing more and pumping less. 

I’ve actually pumped so much milk that both my freezers are FULL and I’ve sent milk to my mom’s to keep frozen there. I’m making a donation to our local non-profit milk bank of 250oz as soon as my blood test is approved. My milk will be processed and sent to local NICUs to help the babies who need it most!

Assuming we all stay healthy I am starting work again on May 4 and Sam will have his first day of daycare. He will be going to the same daycare as Wes but he will be in the infant classroom. 

I think that’s about all for now. It’s amazing how far we have come in the past few months! I will continue to post any big updates here.

Thursday, April 9

  

Hi everyone! Just wanted to post a quick update to say we have been doing great since Sam came home from the hospital. 

He decided that eating is awesome and he is gaining weight really well. At our check up today he weighed in at 7lbs 3oz!

We are trying out some meds to help with his reflux and hope he will be more comfortable. 

He’s still got his nights and days a bit mixed up, but don’t all babies do that? Other than being a little tired, we can’t complain at all. It’s so good to have our entire family under one roof!

Tuesday, March 24

At long last, we are home.

  

What a long, crazy journey this has been. 

Eleven weeks of worry that we would lose Sam before he even had a chance. 

Six weeks of hospital bed rest. Christmas. New Years. Celebrating 10 years since my first date with Dan.

The scariest, most amazing day when we welcomed our miracle into the world.

Ten weeks of NICU. Two hospitals. One major surgery. 

And I wouldn’t trade a second of it for the world. The amazing people I’ve met, those with miracles of their own, those with angels watching them from above. The wonderful people that have cared for me and my baby, the heroes who kept him alive. Friends and family, who we could not have done this without. We love you all.

We are so excited to move on to the next part of our adventure as a family of four ❤

Monday, March 23

Unfortunately, Sam’s homecoming was delayed slightly. 

He has been struggling with reflux and had a day of poor weight gain just prior to release, so they decided to monitor his feeding and growth a few more days to be safe.

We are again planning for his release tomorrow. He has eaten well and hasn’t spit up much, so we are hoping his weight gain will be good enough to come home.

Friday, March 20

A few days ago, Sam decided to pull out his feeding tube. He showed us he was ready to have the tube out for good – he has taken full feeds orally every feeding since then!

Yesterday, the doctor told us to prepare for him to come home this weekend!

Sam only needs to pass his car seat test before he can be released. They will make sure his breathing is ok while in his car seat. 



Look ma, no tube!

Thank you to everyone who has supported us over the past several months. There were many times we were given doubt that we would never be where we are today. We are ready to move on to the next stage of our adventure and bring our Super Sam home finally!

Saturday, March 14

Sam turned 2 months old yesterday! 

Snuggling with his bear…



Sleepy yawn….



Mmmm, bear meat….

There’s not much to update. He had a follow up echocardiogram (he will have these frequently for quite a while) that showed no changes. He’s just still working on eating and growing. It seems like this should be a simple thing, but it generally takes preemies a while to get it down. Especially babies with conditions that impact stamina, like Sam’s heart defect.

We are still expecting to be home soon, probably before the end of the month. We can’t wait for everyone to meet him!

Saturday March 7

Sam is now 5lbs!

We are at the point in his NICU stay where slow and steady wins the race. Learning how to eat and showing consistent weight gain and growth is a slow process.

Right now Sam gets 45ml of milk every three hours. When I can be at the hospital he nurses. He is weighed before and after nursing to see how much milk he transferred, then the balance is given through the feeding tube in his nose. Breastfeeding is a little more difficult for preemies to pick up on, but Sam has transferred as much as 20ml a few times already.

When I can’t be at the hospital Sam takes a bottle. Last night and this morning he’s been taking the full 45ml orally and did not need to use the feeding tube.

Once Sam is able to take full feeds orally for about two straight days and is showing consistent and appropriate growth, he will be able to come home. The doctors and nurses think that will happen in the next 1-2 weeks!

We are also working on his physical therapy with fun little exercises for his arms and feet. We are seeing good progress with the amount of extension he has in each arm though this is a long term process.

I’m amazed every day how strong he is. He has definitely earned the nickname Super Sam!