Amanda and Scott’s Story

Site created on April 8, 2019

Welcome to our CaringBridge website for our baby boy, due July 18th. We are using it to keep family and friends updated about his journey with his medical condition, CDH. This will be his story. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Amanda Richardson

Monday October 7th we moved out of the ICU to the pediatric floor 10 East!!! Such a big step forward!!!!! It was so sad to leave our nurses that we’ve been with for over 3 months though. And VERY sad to leave our private room.

 Our roommate is 10 day old newborn that screams half the night. I stayed up here with Jacob that first night and quickly realized that I wouldn’t be able to do that every night. It was awful. I feel bad for those parents, it’s their first baby and they’re here. But Jacob sleeps all night, just wakes up for a diaper change around 2 and 6. And he needs his sleep. So this is NOT a good match. And I certainly need my sleep. Sleeping at night is what has saved me from losing my mind through all of this.  And I’m a light sleeper anyway. So they’re going to try to move us but I’m not holding my breath. We also don’t have the window side of the room. So I feel like I’m in a dark, loud, claustrophobic cave. Plus I feel like I can’t even talk to Jacob or use the phone in here because the poor new mama is sleeping all the time when her baby isn’t crying. And they don’t have a lounge or anything on this unit. Just a playroom that closes at 5. It is worse than I ever imagined it would be. Hopefully we can get out of here sooner than later.  Maybe by Thanksgiving.  Send help. Lol😭🙏😳😫 so I’m going to be sleeping at patient family housing at night, for my health and sanity. Unless we miraculously get a private room. 

Anyways.... 

Jacob is doing well. Monday they took his sump tube out! One less tube in his throat. He laughed for the first time Monday and burped for the first time too! (That I heard anyway). His laugh was so sweet and a little scratchy. Today they might move his feeding tube from his intestines to his belly!! This is a huge step, too! Although, I’m preparing for lots of messy puke. He gags so much now with nothing in his belly. I foresee lots of baby vomit in my future once there’s actually milk in there.  He lost weight the first night he was here so hopefully that isn’t a trend. But they can go up on calories. He’s going to have some things to adjust to, but he does have a weight buffer. He’s been gagging less while practicing nursing, but no actual nursing. We might introduce a bottle Thursday. Yay!!!

In other news, G-pa is in the house! Greg is visiting for a couple of weeks and Gigi is finally home after being with us for 3.5 months. We love you! I think Greg plans on doing some projects at our house. He’s very handy. 

Ella is adjusting to daycare pretty well I think. She gets emotional at naptime I’ve heard. But she’s crying less at morning drop off. She had her first school photos and I can’t wait to see them. She had a sleep regression overnight this last week but last night was good so hopefully she’s through that for scott’s sake. 

It’s Wednesday and I’m not going home to see Ella today, which is making me sad. But I’m going home for the weekend. Hopefully I’ll get to spend some time with family and friends. Maybe bring Ella to see jackolantern spectacular. 

I think that’s it for updates. Jacob is waking up after a nap on my chest in our cave. I love you guys. 

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