Category: Spina Bifida

Ultrasound

Posted on by Lauren

We had our first follow up appointment on Tuesday. It was with Ezra’s Neuro Surgeon and I knew on Monday that I should have confirmed the appointment, but I didn’t remember to call. So we left early Tuesday morning hoping we still had an appointment. Of course we get there and the Doctor is in surgery. ugh….. and before we were going to start the 3 hour drive home they said we could just go and get the ultrasound and then page the doctor when it is done so he could look at it. Yay. It wasn’t a waist.
Ezra’s ultrasound looked fine. They are still concerned that the shunt isn’t draining well enough, but it is still working. So we are keeping an eye on it. And of course everything makes me nervous. …was that spit up or would that be considered throw up? …is he fussing because he is tired or because the fluid is putting pressure on his brain?
I cannot wait until Ezra can talk and tell me what is wrong.
To much to think about, but I really am trying not to stress about it. We see the Neuro Surgeon enough that if something was wrong, Ezra will be fine, and they will be able to fix it.  No more appointments this week.

Just lazy mornings with the boys.

Home update

Posted on by Lauren

Now that we are home and I have both boys it is harder to update this thing, but have I mentioned yet that it is so good to be home?

Atreyu is starting to realize that Ezra is here to stay. He is doing much better now that we are home and I am able to be with him all the time, but he is a little

confused by his brother. Sometimes he just doesn’t know what to do about him. When Ezra cries he will either bring him a toy or start crying himself. It’s kinda funny. Atreyu kinda says Ezra’s name but it comes out Rara. He is working on it. He was pretty excited to see all his old toys again.

We are all starting to get back into our routines, which is so great. Ezra is just fitting right in. I still can’t believe we have another kid.
This last week has been a little busy trying to figure out all the things I need to get done for Ezra. Appointments to set up, programs to sign up for. But it is all coming together. I will be happy when it slows down a little. Then again it has only been one week since we have been home.

Apparently when the hospital orders supplies for Ezra’s wound they get enough to last a long time. Then Dave reminded me that we have boys so even if Ezra doesn’t use it now I am sure we will be doing more wound-care later.

Finally home

Posted on by Lauren

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.

Day 46

Posted on by Lauren

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!