So here is a link of a collection of photos from Ezra’s NICU stay
We made it. We are so happy to finally be home.
Ezra’s head ultrasound on Friday was fine and we got the final clear to get out of there. A few of the nurses we still freaking out about the long trip home and Ezra being in the car seat. We just wanted to get out of there, the doctors had cleared us to go home. There were way too many people involved in getting Ezra out of there and some thought they knew better, but everyone eventually got on the same page and we were outta there!
For the drive home we had to stop every 30 mins and give Ezra’s back a break. To help it heal better he needs lots of blood flow around his wound. It took us 4 hours to get home but we didn’t care, even Atreyu did great in the long car ride.
Once we were home it was a little stressful having to unpack. But most of it is done and we are just so excited to be here. Ezra is doing great at home. Today Atreyu heard Ezra crying and brought him a toy to make him feel better. I think he is getting the idea that Ezra is here to stay.
We are still on the path to head home. Things are looking good to leave tomorrow.
Ezra had his VCUG and things look alright for now. Which mean no cathing and we don’t have to follow up with urology for 3 months. The bladder changes so much so who knows what Ezra bladder will be like in 3 months, but I will enjoy this time where I don’t have to worry about it. Ortho checked out his hips and they look ok also. They are not dislocated but he does have shallow hips. Nothing is being done about it now.
It is so nice not having to worry about this extra stuff and being able to enjoy him just being a baby.
Everyone in the NICU was worried about us taking the long ride home and having Ezra in a car seat for so long, but thankfully the PT here was able to cushion the carseat so there is not as much pressure on the wound. We will have an even longer trip home having to stop every 30 mins, but at least we will be heading in the right direction, no matter how long it takes us to get there.
Tomorrow morning Ezra has an ultrasound to check his head again. If there is a problem then we will have to stay another day or so for them to do a revision on the shunt. I think he is doing great and his head has been feeling less full, so my hopes are high that he should be fine.
I am still waiting for something to go wrong that will cause us to stay here longer. We are so anxious to get home and pray that it will be friday.
God has already done so many amazing things in Ezra’s life. None of the doctors thought he would heal this well, and he has! Please continue to pray that he is well enough to come home!
The big news is that plastics stopped by today and approved Ezra to be discharged! His back is looking so good. It will still take a while to completely heal, probably more than a year. But at least he is able to heal at home instead of in the NICU.
Tomorrow we will be doing some more test to make sure everything else is alright. These test Ezra needed to be able to be on his back to do. We will check his bladder with a VCUG test. They will basically fill his bladder and then watch how he pees. This will check to make sure his bladder is emptying completely and makeing sure everything is working alright, if it is not we may have to catheterize him about every 4 hours to help empty his bladder fully. Bladder and bowel control is connected through the lower spine, around the sacral level, because this part of the spine is damaged we don’t know exactly how it will work.
We will also have ortho come and look at his legs and hips to see if there is anything needed to be done, or any problems we need to know about.
Once these things and a couple other things are done we get to go home. Probably Thursday or Friday. If anyone is heading to Traverse City from Grand Rapids during that time let us know if you can help us bring some stuff back up. We somehow acquired more things living down here for 6 weeks.
Yesterday Ezra had another ultrasound to check his shunt. Right now it is working but might not be working as well as it should. If it stays this way he might need a revision. Just another thing to add to the prayer list. Thank you everyone for your prayers. We cannot wait to get home.
We had a fun day putting Ezra’s first outfit on. We had a chance to take lots of pictures of the cute boys!
My cute boys hanging out in the NICU…
Family picture with everyone wearing clothes.
Atreyu’s favorite thing is to poke at his brother and being tickled by the nurses.
Atreyu helping with Ezra’s pacifier.
Today was one of the good days, but we still can’t wait to go home.