Protective

Henry HATED baths. He would scream and cry. We would try to go fast, but it didn't matter, he would still scream. You would often be right at our feet trying to help Henry.

 When you were a baby, we took a picture of you in a soup pot. This is Owen is a soup pot.

 

When we did this with Henry, you screamed! You were so upset that we might actually cook Henry!

 

 Henry didn't seem to mind, but it was so sweet how protective you were of Henry.

When Henry was new, we spent a lot of time at home, snuggling on the couch.

But we also spent time on the floor.

 You love to read him your airplane book, but you would always move it out of the way before he could touch it.

 

Home

Henry couldn't ride in a "normal" car seat, instead he got to ride in a car bed. This was because he couldn't breath if he was sitting up. So, when we took him home or took him anywhere, he rode in this bed.

 

 When we brought Henry home, he had to wear a pulse oximeter all the time. This told us how much oxygen was in his blood, to let us know he was breathing ok. The machine would beep a lot. One time, we asked you what babies said, and you said "beep beep!"

 You were so gentle with baby Henry.

NICU

Henry spent 16 days in NICU growing and learning to breathe and eat. We brought you to the hospital a few times to visit your brother.

 

 Did you know that Henry was born with teeth? It's not common, but some babies are born with "natal teeth". His were pulled by a doctor when he was only a week old, and the tooth fairy found him in NICU and gave him some money.

Henry's Birth

Henry was born on February 9th, 2010. I went into labor with him around four in the morning. Nick and Bob-Bob came over to watch you, while dad took me to the hospital. Henry was born around 10 in the morning. When he was born, we discovered he had a birth defect called Pierre-Robin Sequence. This meant that he grew funny when he was inside of me. His chin was really small, he had a cleft palate (a hole in the roof of his mouth) and a very small tongue, that was very far back in his mouth. He was taken to the ICU, so they could watch him closely. When he was on his back, he couldn't breathe because he would choke on his tongue. So, he spent 16 days in NICU where he started to grow. About one in 8500 kids are born with Pierre-Robin. It's pretty rare, and a lot of kids need surgery to help their chin grow. But, Henry didn't need surgery on his chin. He would need surgery later to fix his palate, but he grew enough where he could breathe on his own.

 

 Henry couldn't suck because of the hole in his mouth, so he had to use a special bottle to eat.

 Look at his tiny chin. He had a tube up his nose into his stomach to help him get enough food.

 This was the first time you met Henry. You were so small!

The Story of Henry

Dear Owen,

When you were 20 months old, we welcomed your brother, Henry, into the world. When you were five and a half, we said goodbye to him. I want to give you Henry's story. I will share pictures, tell stories, and hope to help you remember your brother. You were an amazing brother to Henry. He was very lucky to have you.

 

Since his death, you have been asking a lot of questions about Henry, about his birth defect, about his cancer, and about his death. You have such an inquisitive mind. The other day, you asked me to write in a notebook Henry's story. If I missed a piece, you would want me to go back and write it again. I hope that this helps you understand as you grow up. I hope it helps you remember your brother.

 

I also want you to know how much you've helped me and dad through this time. Someday, I hope you truly understand how you helped us survive. You are an amazing kid, and I hope you will treasure this story. Henry was a remarkable kid, I think he took after you.

 

So, here is Henry's story. It may not always be in order, it may not answer all your questions, but hopefully it will provide you a place to always look and remember.

 

I love you,

mom



 

 

 These were taken May 27th, 2013. Two days before your 5th birthday. Five days before Henry developed a rash, and our world got turned upside down.