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.
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.
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.
