We had a fun day putting Ezra’s first outfit on. We had a chance to take lots of pictures of the cute boys!
My cute boys hanging out in the NICU…
Family picture with everyone wearing clothes.
Atreyu’s favorite thing is to poke at his brother and being tickled by the nurses.
Atreyu helping with Ezra’s pacifier.
Today was one of the good days, but we still can’t wait to go home.
Today Ezra had one of his regular weekend nurses and we went out to the children’s museum with Atreyu. The Renucci house has a pass we were able to use and its just a couple of blocks away. Atreyu had tons of fun and we had fun watching him. There is nothing new to report on Ezra, he’s continuing to do well.
For the past 25 days we have been staying at the Renucci Hospitality House. It has been very convenient because it connected to the hospital. This is good and bad because you never have to go outside, and you never go outside. They have a nice kitchen where we can prepare our meals and many service groups serve meals to all the guests. Laundry is onsite and they even have a playroom where Atreyu can get out some energy. Apart from that it is a lot like living in a hotel room, which gets old even if you are on vacation.
My work space is kind of cramped but I at least have a window and am able to be productive 40+ hours a week. As much as we long for our own house we are grateful for such wonderful accommodations.
Lauren talked to the plastic surgeon today about when we could have the rest of the Doctors do their consultations. He said that the wound is starting to blister a little, which is a normal part of the healing process, so he has to stay off his back for now. We are still hopeful that by the end of next week we might be able to get those doctors to see Ezra.
Ezra seems to be stronger now then ever, he is recovering so well from the shunt surgery. We can feel the pressure relief in his head, which has got to be a good feeling for him. Since I work a lot during the week, I am looking forward to spending a lot of time with Ezra this weekend.
16 days after his birth, Lauren got to hold Ezra for the first time. Yesterday, the surgeons cleared Ezra to be held. His back has a long way to heal, but he is doing well enough to be held. Its a simple thing, but it is a big deal when you are not able to hold your child.
We talked to the neonatologist about Ezra’s head growth. It is a little larger than average, but it is measuring within a normal growth curve. The last ultrasound showed that the fluid levels had not increased, but neurology still thinks that he will eventually need a shunt. So far the doctors have been surprised by some of his progress, and we pray that this is one more thing that they will be surprised about.
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.
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.
