Category: Ezras NICU

Day 7: Laurens Birthday

Posted on by Dave
Todd with Ezra

Today is Laurens birthday.  Most of it was spent sitting with Ezra, but she did get some family time.  Todd and Amy (Laurens brother and his wife) came and visited and we were able to go out for diner along with her mom.  It was another nice break from the hospital,but every moment away is tough when your newborn is in the NICU.  Lauren also got to spend some time with a local spina bifida moms group who was meeting tonight.

Opening His Eyes

We were looking forward to getting some new recovery updates from the specialists who have been working with Ezra.  Sadly, that wasn’t the case. If there is one theme for this whole story it would be wrapped up in one word: wait.  We know that for at least one of the surgeons this is his surgery day, tomorrow is his office day, so hopefully he will be by to give us some updates to Ezra’s progress.  There has been some fluid build up in Ezra’s back , but it is soft and they are not concerned about it right now.  I gave Ezra his bottle this afternoon, and he took the whole thing, about 50ml.  I don’t know if I’m better at feeding him or just more patient and don’t give up when he fusses or takes a  break.  Either way, it is good to see him eat.  I even got to see his eyes for a moment, now that he is waking up a little more.

Tomorrow is the grand opening of the new $300 million Helen Devos Children Hospital.  We don’t anticipate having to move rooms, but it might cause some more commotion as everyone else adjust to the new facilities.  Any visitors will come through the new building, and you can’t miss it.

The first week is over, and it has flown by.  Most days I didn’t know what day it even was.  As the days turn to weeks, we will needs Gods strength and grace to endure.  With out it  I don’t know how we would even breath.

Day 6

Posted on by Dave

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.

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The First Weekend (Day 5)

Posted on by Dave

Atreyu with his cousin Cooper

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.

Day 4

Posted on by Lauren

Well it is a brand new day. I am out of the hospital and back in our room at the Renucci House. It was wonderful to wake up with the family and have Atreyu there with me.
I have been feeding Ezra his bottles but today his respiratory rate had gone up so they had to put in a feeding tube this afternoon as a precaution. Nothing to worry about, and it probably wont stay there very long, just something to help out. Last night they had to move his IV site to the top of his head, it looks so sad but it is alright. Once he starts eating more, which he will with the feeding tube, they will be able to stop the Iv fluids.
The Neuro Surgeon stopped by this morning, he said Ezra was doing well but realistically that they have to be very creative with him and something will probably go wrong. His lesion is healing well but it is very large so there are so many unknowns into how it will heal. There will more than likely be more surgeries to repair the opening. Even though he will be in the NICU much longer we have a wonderful place to stay in Grand Rapids, friends close by, and Dave is able to stay down here and work from Grand Rapids.
Yesterday the plastic surgeon reminded us that the healing needs prayer as much as the surgery itself, the sooner Ezra’s back heals the sooner we can move on. So please pray for recovery at this time.

Tonight and tomorrow we have family coming in and we can’t wait for all the aunts and uncles to meet Ezra. We are thankful for our families support during this time.
I know some of you have asked how you can contact us during this time, please feel free to visit our contact link towards the top. We will keep that updated with our contact info.

Day 3

Posted on by Dave

Good news today.   Ezra was taken off the ventilator and is breathing completely on his own.  The nurses want to feed him at 2pm so we’ll see how that goes.  He is looking good, and if he starts eating enough he wont need his IV until his next surgery.  Lauren is being discharged today and we will be able to start settling in more and getting routines for our long stay.  The doctors now anticipate what was going to be 2-3 weeks will now be 6-8. This is primarily for the tissue to heal around the wound.  There wasn’t much for the plastic surgeon to work with and it takes 6 weeks for the tissue to become strong enough.

We don’t know what will happen next except that they will recheck his head with an utra sound on Wednesday the 12th to confirm whether he will need the shunt surgery.  Dr. Scarli is pretty confident that Ezra will need a shunt, but if fluid levels in the brain go down, he may not need it.

For right now everything is going well and we hope that as he comes off the IV that well be able to see his little eyes.