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!

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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!

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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!

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Our financial situation

We have had a few people reach out to us regarding our financial situation. We appreciate the thought and the generosity, but I wanted to assure people that we are ok financially.

After being on hospital bed rest six weeks, followed by Sam’s NICU stay and heart surgery the amount billed is pretty serious. But, we made sure to select a good insurance plan and the amount we actually owe is very reasonable and is manageable for our family.

Thank you to those that have reached out to us directly or through other family members. We have the most amazing friends and family!

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Monday March 2

Sam is up to 4lbs 11.5oz and putting on weight quickly.

He’s taking a high calorie formula every other feed in order to catch back up to where he should be.

He has been learning to take food orally and making quick progress. He’s taken a full 40ml feed from the bottle, and as much as half his feed at the breast. Nurses estimate he will be home in a couple more weeks once he is more consistent with eating and has grown a bit more.

Wes got to hold Sam for the first time a few days ago. He loves his baby brother so much!

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Visitation

Now that Sam is back at CDH and has been making consistent progress, we are able to invite additional visitors to meet him.

A parent must be present for Sam to have visitors so please let Dan or me know if you would like to visit and we can coordinate a time.

Only healthy adults are able to visit per hospital policy. Sam will have to wait until he comes home to meet all his cousins and little friends.

We ask that if anyone in your household has been sick to please stay away. Sam’s heart and lungs would make even a common cold very challenging for him. 

We also ask that people refrain from smoking before visiting, or at the least change into a clean smoke-free shirt and keep their hair pulled back. 

Looking forward to having Sam meet his friends and family!

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Wednesday February 25

Sam was able to move back to CDH last night!

They have adjusted his feeding schedule to 40ml every three hours. He’s also now allowed to try breast or bottle feeding first. He nursed for the very first time today and did a great job. He took 6ml of milk that way and had the rest of his milk through he feeding tube.

While his nurses at Luries told us he was growing well, the doctor here just told us that he had fallen off the growth chart and they want to take a closer look at his nutrition and do some tests. 

Feeding and growing are the last hurdles to overcome before Sam can come home. Hopefully we can get him back on track and home around his original due date at the end of March.



Ready for the ride back to CDH!



All settled in to the new room 🙂

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