Category: Spina Bifida

This morning I had the nice surprise of seeing Ezra’s eyes. I can’t believe a week ago I had a baby. Things have been going well, considering that we are where we are at. Ezra still has lots of healing to do but he is doing great.
I am so thankful that we are close to where he is in the NICU, it is just a simple walk across the hospital and I am able to spend time with him. It makes it nice to go back and forth between Dave and Atreyu and spending time with Ezra.
Dave and I are working on having Ezra take all his feeding through the bottle, once he is good at that they can take out the feeding tube. He takes about 45 mins to finish his bottle and we have the patience to get it all down through the bottle, but the nurses only give him about 20 mins to take the bottle so they usually end up finishing with the feeding tube. Hopefully soon he will be awake enough to be a better eater but for now Dave and I are trying to do as many feeding as we can.

I had the chance to sort of hold Ezra again today. We needed to change his bedding so I was able to lift him up while the nurse put on a new sheet. I can’t wait until I actually get to hold him.

Ezra had an ultrasound of his head yesterday and the results were stable. So that mean extra fluid is not building up in his head and today he does not need a shunt. It is still a possibility  and that would be another surgery, but it is something that will save his life if he needs it and we are thankful for that.

Today Lauren got to hold Ezra, kind of.  While the nurse was changing the bedding, Lauren got to pick Ezra up and hold him above the bed, he cried the whole time.  Someday she’ll be able to really hold him, but for now its better than nothing.    Feeding is still going well, he eat part of his bottle but falls asleep so quickly the rest is given through his feeding tube. Once he is able to finish his bottles the feeding tube will come out. He still is really sleepy, but that is normal for a newborn. He always brings his hands up close to his face just like we saw him in his ultra sounds.

Lauren’s family were sick today, so they weren’t able to come visit today.  They got checked out to make sure that they wouldn’t be contagious.  Hopefully we will see them on Monday.  Were are starting to get into some routines around here and make our room more of a home.

Monday most of the doctors should stop by to see Ezra so we hope to hear some good news about Ezra’s progress over the weekend.

Some pics of the day, if you click on the pics you can browse through them.

The weekend seems like a busy place around the NICU;  a lot of out of town family.  Things were not so much different for us.  My parents are in town along with my sister and her family.  We also had an encouraging visit from some friends from our church. Lauren has finally been able to spend some quality time with Atreyu which she has been missing all week and Lauren’s family is in town now and we will be seeing them a lot over the next week.

Ezra has also been making some small steps forward.  His feeding is improving tremendously.  Tonight he took almost his full feeding through the bottle.  If he keeps getting better well be able to remove the feeding tube.  Also when we were out for diner the nurse called to tell us he opened his eyes.  He has been off the pain meds for quite some time, but he has been sleepy, never opening his eyes until today.  I cannot wait to see them.  We appreciate so much everyone that has been praying for us.  Your thoughts and gifts have been such a blessing to us.  Our number one desire is to see God glorified through this.

I am sure a number of you are wondering about his wound.  Below is a picture of his back.  The nurse was changing his dressing while I fed him.  The area was all purple after the surgery, but now is pinking up (pink is good).  It has a long way to go, but the doctor has been pleased with the progress so far.  On Monday they will do another ultra sound of his head to see what is happening to the fluid levels.  This will help the Doctors decide whether to put in a shunt.

Although Ezra is in the NICU, he is not fighting for his life.  There will be a lot of days where nothing really happens as most of our time is waiting for healing to happen.  We will try to post updates at least once at the end of the day.  If there are any surgeries or important things to pray about we will try to post those as we find out.

Again, we appreciate each one of you so much.