Doing Better

We are happy to say that Vince has been improving a lot lately. Since last night, he has been pretty alert and has been doing very good eating on his own so they were able to take out his feeding tube, shut the IV off and take him off of all the monitors. They want to keep us in here still tonight to make sure that he is getting used to the siezure medication and that he continues to eat well and fill up his diapers. Right now, we are hoping to be released to go home tomorrow if all goes well.

The doctors think that his siezure was caused by spots of blood that were on his brain in combination with the drastic change in pressure when the shunt was put in. The bleeding may have been caused by the surgery and the surgeon said that it is something that does happen, but Vince's may have bled a little more and the blood irritated the brain and caused the siezures. They verified that the bleeding was stopped, but it will take a while for the blood to go away, so Vince will have to be on anti-siezure medication for a while until that clears up. We will come back in about a month for a follow-up to see how it is progressing. Another thing that may have had an effect was the change in pressure after the shunt was put in. When the fluid was building up in the brain, there was a lot of pressure and when the shunt was put in, all the fluid drained and the pressure decreased rapidly. That sudden change in pressure may have irritated the brain and helped lead to the siezures. According to the surgeon, these are things that are not super common, but do happen in about 10% of cases. Once the blood is dispersed and the pressure equalizes, Vince should not have any more problems like this and they don't expect any long-term affects from it either.

He had a good visit last night and this morning from Grandma and Grandpa Santini and Uncle Chris. We've got a busy day tomorrow as the physical therapist will be stopping by to assess his movements and also the surgeon will be coming in to remove the stitches from his head and abdomen from the shunt surgery. It's been a really long couple of days and it will be nice to be home again finally. We'll update again soon.

Nick, Andrea and Vince

Hospital Again

Well we are back in the hospital. We got here last night at about midnight. Yesterday Nick and I noticed Vince was twitching a little bit and at first were not sure what to think about it, but because he had just had surgery we felt it was best to call the doctor and see what they thought. At that point he told us that Vince might be having seizures and that we should go to our local ER and see what they thought. The hospital in Charlotte got us in quick and after the ER doctors assessment they decided that yes in fact he was having seizures. At that point they told us they were sending us back to Bronson to be checked out. Vince and I went by ambulance and Nick went home to get a few things and met us at the hospital. Once we got here they gave Vince a bunch of medicine to stop the seizures. Because the medicine makes people very tired they put in a breathing tube to help him out. As of right now Vince is still out of it and still has the breathing tube, but they are hoping to get him off of the tube tonight. As of right now there are a few possibilities as far as what was causing them and when we know more we will let you know. He is doing well right now and the medicine seems to be working. He has not had any more since last night. We are not sure how long he will be in here, most likely a few days, but like everything else time will tell. Nick and I are doing well, but are very tired. It was a very long night. Thank you again for the prayers, keep them coming please.

Love,
Nick, Andrea, and Vince

Home Again

We are home again. Vince is doing really well. He was discharged today at about 1 pm and we were home by about 3. He has been kind of of sleepy and at times fusses but for the most part content. We are not sure if it is from the breathing tube or what, but his cry is much louder and higher pitched than before. If you have not heard him cry it was already really loud, but now it actually hurts your ears. Even with that we are just so happy he is doing well. Nick and I were also able to get some very good and very needed sleep last night. We got about 10 HOURS. That is about two nights of sleep worth and I am sure it will be a long time until we get that again. Hopefully this was the last hospital stay for a while, but both of our hospital stays have been good. Bronson has done a wonderful job with Vince and we are very thankful for that. The nurses in both the NICU and PICU are great. Again thank you all for your prayers. I think they really have helped.

Love,

Nick, Andrea, and Vince

Surgery Update

We just spoke with the neurosurgeon, and Vince is out of surgery and everything went well. It took 2.5 hours fromt he time he went to get anesthesia to when the doctor came out to talk to us. He said that they drained a good amount of spinal fluid from his head and that the shunt was placed and is working. They already pulled out the breathing tube and they will be taking him to recovery soon. We are just waiting for them to come tell us that we can go in and see him, but it is a relief to have this over and to know that it went well. Hopefully we will be back home in a couple days. Here are some more pics from this morning. Thanks to everyone for all of your thoughts and prayers.

Nick, Andrea, and Vince

Just A Few Pictures

Here are a few pictures from this weekend, we hope you enjoy them. The last picture is an attempt at a cloth diaper, it did not work so well as both Vince and I needed a bath after he got done with it.

Shunt Update

Vince had a follow-up appointment with the Neurosurgeon on Monday and it was verified that he will have to have a shunt put in. We were hoping that he wasn't going to need it, but his head has been growing faster than normal and an ultrasound confirmed that his ventricles were getting bigger.

Most people with SB end up having to have a shunt, so we were prepared for this. Spinal fluid is produced in the brain and circulates down the spinal cord but due to the SB, that fluid does not circulate as well as it should and it builds up in areas of the brain. The shunt is a small valve that drains that excess fluid from the brain down into the abdomen where it is absorbed by the surrounding tissue. There is a small tube that is inserted into the area of the brain where the fluid is pooling and when the pressure builds up, the valve opens and it drains through another tube that runs under the skin into his abdomen. The main risk involved is that the shunt stops working or gets plugged up and if that happens he will have to have another surgery to have it replaced. Other than that, the shunt will not affect his mental or physical development and he shouldn't even know that it is there.

The surgery is scheduled for Tuesday and he is expected to be in the hospital about 2 nights, so we should have him back home by next Thursday. The surgeon said that this is an easier surgery than the closure surgery that was done right after birth, so we are confident that he will make a quick recovery from this one as well. We'll update more after the surgery.

Have a great Memorial Day weekend.

Nick, Andrea, and Vince

Visitors

We had a busy but very nice weekend. On Friday Vince had got his stitches out, he had 18 of them. The doctor told us the area was healing very nicely. The doctor’s appointment must have worn Vince out because he slept so well that night. It was a one night occurrence but at least we know it is possible and I am sure it will start happening more frequently. On Saturday Andy and Amy (Nick’s cousin and his wife) came over for a little while. They are expecting their first child in about two months. That night Grandma and Grandpa Santini came down to visit. Vince had a great time with everyone - well at least he was very good while they were all here. I included a picture of one of our bath time adventures. Sometimes it goes better than other times, this one happened to be messy. :)

So Tired

Vince had a pediatrician appointment on Monday and he is up to 7lbs now so he must be eating well. They also measured his head and it was pretty much the same size as it measured when he was born, so that is a good sign that maybe he won't need a shunt. We will go meet with the neurosurgeon in Kalamazoo on Friday to get his stitches out and they will do an ultrasound on his head so hopefully we'll find out some more then. Monday was his first excursion out of the house since he came home and a few lessons were learned - always bring a change of clothes and a bottle.

Other than that, we are trying to get some sort of a routine down that works the best for him. So far we have not been successful. He sleeps very well during the day but only for about an hour at a time at night, so one of us is pretty much always awake. I guess we'll get used to it eventually.

Nick, Andrea, and Vince

Home Sweet Home

We had quite the eventful day today. Andrea was scheduled to be discharged, so we were getting ready to come home for a night to do some laundry and sleep in our own bed for a night. We figured that we would have to be back to the hospital tomorrow to be with Vince, but he was doing so well that the doctors discharged him today too. So all three of us are back home now. He has an appointment with a pediatrician on Monday and then has to go back to Kalamazoo on the 18th for an ultrasound on his head and to get the stitches removed from his back.

It really took us by surprise when we heard the news today but we are so thankful to have the little guy home with us so soon.

Nick, Andrea and Vince.

Day 4

It's been quite busy for us the last two days. The surgeon checked Vince over yesterday afternoon and cleared him to start eating so we have been on-call every time the nurse sees that he is getting hungry so we can go down and feed him and change his diaper. We were up a couple times last night but it wasn't too bad. We're going to have to get used to doing that anyway.

Andrea is still pretty sore but she's able to get around well. The doctor thinks that she will be able to be discharged tomorrow. Still no word on how long they expect Vince to be here though.

Here are some more pictures.

Nick, Andrea, and Vince

Surgery Update

Vince had his closure surgery yesterday and so far, so good. The surgeon thought everything went as well as planned and he still seems to have good sensation and movement of his feet and legs. Vince is just resting right now, his breathing tube was removed last night and he is doing good on his own. He still seems a little groggy from the anesthetic and pain meds, but he should start getting ot be more alert today. Hopefully he is awake enough that we can try to feed him later.

Andrea is doing well too. She is a little sore yet, which is to be expected, but she's getting around good enough to go see the little guy often.

Nick, Andrea, and Vince

More Pics

More pictures from yesterday and today.

Nick, Andrea, Vince

He is here!!!

Vincent Myles was born at 10:20 am on May 4th. He weighed in at 6 pounds, 14 ounces and is 19 inches long. It was a very long day but a very good one. Both Nick and I have had the opportunity to hold him. We were not expecting this, but were very happy about it. His lesion is where they thought it was, in the Sacral region, and pretty small so everything is looking good so far. Currently he is in surgery to close the opening in his back. Once he is out of surgery we will update again and let you all know how everything is going. Thank you all for your prayers, they really mean a lot to us.

Love,

Nick, Andrea, and Vince