Category: Spina Bifida

Today we are excited to announce that Ezra does not have any tubes sticking into him.  No IV, no catheter, and now, no feeding tube.  Over the last day he made a huge advancement in his eating. Before he was finishing some of his bottles, and it took him a while.  Now he is finishing every bottle in under 20 minutes, some of them in as little as 6 minutes.  He is starting to look more like a normal baby now that he doesnt have things tape to him and sticking in him any more.

Tomorrow he gets another head ultra sound to check the status of the fluid in his head.  His head measured larger today, so we will find out if that is from more fluid buildup.  We pray that there is not any more fluid.

Today was one of those days where I just wanted to take my baby and go home. Nothing went wrong, I just feel so exhausted and want to cuddle on the couch with Ezra watching a movie.
My baby boy is starting to wake more for his feedings. It’s nice to see his eyes and see him looking around when I am talking to him.

Here are some pictures from the day.

Today is the day that most babies born with spina bifida are able to turn onto their back.  That would mean that within a few days we would be able to go home. However, Ezra is a long way from that. The doctors have not even begun to speculate when that will be.  We can only go by the original time line of 6-8 weeks.  At least by time we get to go home we wont have to do any snow blowing.  How’s that for glass half full?

The neonatologist said that he is doing alright without the catheter, which is definitely good news.  That is one of the life long issues that he might be facing, so the fact that he is doing good now is encouraging.  We’re still working on the feeding.  It seems that when he is awake he does the best.  He just isn’t awake that much or for that long.

We are looking forward to the weekend, even though all the days are kind of the same around here.

Today, the surgical residents stopped by, but there was nothing new to report.  I think that that is a good thing.  No infections or complications is always a good thing.  Right now Ezra’s biggest struggle is eating.  He has been awake a lot lately, just not when he is eating.  He is on a 3 hour feeding schedule, and seems to always be awake a half hour before he eats, but then falls back asleep.  We also are not able to burp him, so there ends up being a lot of air in his stomach.  He has a feeding tube, so it is not a big concern, it would just be nice to see progress.  The truth of the mater is that we will probably be dealing with these types, of things a lot over the course of his life and it is one more thing that we need to trust God with.

We were able to get out of the hospital again today, which was nice. Our accommodations are comfortable, but lets face it, hospitals are not fun places to be.  We hung out with Laurens family one last time before they head back out of town, and now we will have a couple of days with no visitors.  I think we have had a visitor almost everyday, since we’ve been here.  I’ve been able to do a lot of work from down here, and along with everything else,  I think that I have been busier than I was back home.  We do miss our normal routine, but were starting new ones, which involve me taking care of Atreyu more.  Its been nice to spend more time with him, but it brings its own challenges.

Well today felt like a really good day. It started out with Ezra having poop everywhere! but we got him cleaned up and changed his dressing on his back and it got better from there.
We are starting to get to know the nurses better and Ezra is building his team that will continue to care for him. It is so nice to walk in and see a familiar face and know that they are comfortable with Ezra. These nurses are so encouraging to be around and help me to do as much as I can with Ezra.
I am starting to feel tons better from the c-section. It feels better to get around and have a lot more energy.
Ezra had a big day. He was taken off his antibiotics, which means his IV was able to come out. His head is so cute without an IV. Also they were able to take out his catheter to see if he could pee on his own. And of course the little rockstar did. They will keep and eye on it and make sure he is emptying his bladder. If he isn’t they may have to put it back in or cath him a few times a day.
The doctors stopped by and said Ezra is doing fine. Which sounds good to me.
Tomorrow I think Dave and I are going to try to get out of the hospital, I think we are both getting a little cabin fever and need some fresh air. But everything went well today.