Monday, October 31st

Will is having a great day. He gets his first feedings today!! As a matter of fact, I am fixing to take him some fresh breast milk right now.

His ventilator settings have gone down too. It can be a slow process... but he is doing well so far. They are also weaning him off some of his medications, mainly for his blood pressure.

His nurse shampooed his hair this morning and combed it. He sorta looks like a used car salesman!! I'll try and take pictures.

Happy Halloween!!

Saturday, October 29th

Will is continuing his road to recovery. He had his chest tube removed yesterday (this tube drained fluid from his chest cavity after the surgery).

Nothing much has really changed since yesterday. He is still on dialysis, but hopefully not for much longer. His doctors are continuing to reduce his ventilator settings... I know he can't wait!! Since he has been more awake, he grabs his ventilator with one hand and grabs his NG tube (in his nose) with the other!! We have to watch him very closely... he's real sneaky!

Friday, October 28th

Will is doing well. He had a head ultrasound yesterday that showed the brain bleed had not progressed... a very good thing. Also, they did another EEG for an hour and it showed that he is not having any seizures, so they can take him off the Dylantin.

Since his chest closure Will has a lower urine output, which is normal after this procedure. His doctors decided to restart his dialysis this morning to help him get rid of all his extra fluid.

The next step is getting Will weaned from his ventilator. So far, they haven't had too much luck with this, but today is another day. You can't rush it!! When he is off the ventilator, they will start feeding him, and then he will move to moderate care and out of intensive care!! We hope this will happen before Josh leaves Sunday afternoon, but we will have to see.

Wednesday Update

Will had a good day. His chest was closed this morning, and he tolerated it fairly well.

He is going to have another EEG done tomorrow... this time just for an hour to make sure that he is still not having any seizures. They will also use this test to determine if they can take him down to just 1 anti-seizure medication... phenobarbitol. This medication is much easier to manage for small babies whereas the Dylantin is much more difficult.

Will was much more active this evening, he looked at us and squeezed our fingers so tight! His hair was so adorable... his nurse gave him a bath and when she shampooed his hair she styled it to be spikey on top. I wish I had my camera to take a picture so I could share it with you.

Wednesday, October 26th

Will is having his chest closed right now. We are hoping his blood pressure will be ok this time!

We received some encouragiing information from one of the attending cardiologists yesterday. He said that these brain bleeds happen more often than they think... he thinks that sometimes they don't catch it because the babies don't show symptoms. He says it isn't uncommon for this to happen to such small babies who go on a heart and lung machine during the heart surgery. As a matter of fact, they have had a couple of babies this month with brain bleeds.

There are also 4 levels of bleeding that can occur in the ventricles of the brain. At the time of the CT scan, it appears that Will is only at a level 2. It is when it gets to a level 3 or 4 that it can become very serious as far as damage to the brain.

Right now it is kind of a "wait & see" situation. The doctors are going to do head ultrasounds every couple of days to determine if the bleeding gets any worse. Will's body might reabsorb the blood or the blood could cause a dam where spinal fluid gets blocked and his brain could swell. They are going to keep a very close eye on him to determine if he will need any intervention.

Monday Update

Today did not turn out as we had hoped.

First, when Will's doctors tried to close his chest this morning, his blood pressure dropped to dangerous levels which made them stop the procedure. It was just his body's way of telling us he wasn't ready yet. They will reattempt it sometime soon when they feel he will tolerate the procedure.

Will did have his CT scan, and unfortunately we got some bad news. We got the preliminary results about a 1/2 hour ago from his cardiologist... the scan showed blood in the 1, 2, & 3 ventricles on the lateral side of the brain. From my understanding, the neurologist believes Will may have had a stroke that caused a brain bleed. He told me that there are 2 types of strokes: strokes that cause clots; strokes that cause brain bleeds.

There is no way of knowing what caused the brain bleed; it could have been caused by the surgery, but we will never know.

Will is going to have neurosurgeons look at him tomorrow. They may have to do a procedure where they put in a shunt to drain the blood out of the brain.

An MRI will give us more information, but until his chest is closed and pacer wires are removed, they can't do it. It may be as long as a week.

As far as the long term effects of this brain bleed, I think it will be a long time before they can determine that. He may not show any effects... babies can bounce back remarkably well from this. One thing you have to remember is, humans stop producing neurons at 2 years old. So, if an adult had a stroke, the neurons lost would be gone forever, but with an infant, they have two years to grow neurons.

We are going to talk to the neuro-team tomorrow, and hopefully we will get a better explanation. I hope I got all of this information right... it was kind of a blur since both of us were in a state of shock when he told us about their findings.

Monday, October 24th

Will is having his chest closed this morning! He is doing so well. He hasn't had any seizures for the past 2 days. He is scheduled for a CT scan later today, but I don't know what time. Hopefully, everything will be normal. I will update this site as soon as I know.

He has also been a lot more active. He opened his eyes and moved around more. Last night when I talked to him he reached out his arms as if he was asking me to pick him up... it was so hard not to!! His Daddy was real disappointed he missed it, but he will see him this afternoon.

Saturday, October 22nd

Will did reasonably well overnight. The neurologist examined his EEG around 11:00 last night and discovered that he is still having seizures... some a minute to a minute and a half in length. They are giving him a new anti-seizure medication... Dylantin?? We're hoping this medication will have a better effect than the Prostoglandin.

Will's cardiologist decided this morning to close his chest tomorrow... they we're hoping to do it today, but the anti-seizure medication has lowered his blood pressure and his body is kind of overloaded with fluids right now.

His kidney is still working great... he is producing more urine than most babies with 2 kidneys. However, since they want to close his chest as soon as possible, they want to go ahead and do dialysis to ensure he will be ready tomorrow for the chest closing procedure.

Since Will came out of surgery his doctors have been concerned that he has been slow to wake up. This could be related to the seizures, but no one really knows. It doesn't help that the anti-seizure medication makes him extremely sleepy, so who knows why?

Will's nurse let Josh & I give him a bath last night. It was very special for us. We look forward to all the little things, even changing a diaper!!

Friday Update

Will has had a long day. First, he had a cranial ultrasound in which doctors looked for signs of cranial bleeding and fluid in the brain. Thankfully, his ultrasound was normal with no signs of fluid or bleeding.

This afternoon he had an EEG. This is a procedure where electrodes are placed all over his head in order to measure his brain waves. It was ordered because his doctors wanted to see if Will was having any seizures that could not be detected by his movements. Unfortunately, the EEG showed that Will is having constant rythmic seizures in the lateral right side of his brain.

So what does this mean? Well, we don't know yet. They need to do a CT scan and an MRI in order to find out why he is having the seizures. Unfortunately, they cannot do the scans until early next week when his chest is closed and he is more stable.

In the meantime, they are giving him two medications that are supposed to stop the seizures. So far they are working, but they will have to keep increasing his dosages until they completely stop, which hasn't happened yet.

These seizures are troublesome because 1) we don't know what's causing them and 2) they can cause injury to the brain. Seizures of this nature can be normal in newborns, but it is possible that he had a stroke as a result of his heart surgery, or he could be hemorraging deep in his brain where the ultrasound couldn't read it.

We really won't know anything until next week, but we will continue to give daily updates.
We love you all very much for all of your support!

Friday, October 21st

Unfortunately, Will did not have a very good night. He had two seizures. When he seized the first time, only his eyes twitched. About 2 hours later, he seized again, only this time his entire face twitched. They have given him medication to stop his seizures, and so far it has worked. His stats are good for now, we are just waiting for him to get a CT scan to see if his brain sustained any damage from the surgery. We will update the page when we get the results, which should be later sometime this afternoon.

Thursday, October 20th

Will is slowly beginning to heal from his surgery. When we visited him this evening, he looked like he was starting to show signs of waking up, but for the most part he is still unconscious.

This morning he was not producing any urine, so his doctors decided to start him on dialysis. They did it for about 2 hours. After they finished, they decided to give him some Lasix to see if he would begin to produce urine, which he did!! Not much... but it is a start.

Thank you for all of your comments... we have enjoyed reading them!

Will's Story

Will was born on Monday, October 10, 2005. He was five weeks early, but you wouldn't know it by looking at him. He came out screaming and weighed 5 pounds, 6 ounces with a head full of hair!!

We knew before he was born that he would have some health issues, particularly with his heart. He has been diagnosed with Hypoplastic Left Heart Syndrome and Double Outlet Right Ventricle, both of which are serious heart defects.

He also was born with one kidney, which is a bit abnormal in shape and it is located in the middle of his body, rather than on the left or right side. Luckily, the kidney has been functioning adequately... as he showed us right away when he urinated on the doctor who delivered him!!

He also has a cleft palate, which is a hole on the roof of his mouth. This is not a big problem... it will be repaired when he gets older.

Will's heart defects require 3 surgeries, the first of which must be performed within the first 10-14 days after birth. It is called the Norwood Procedure.

Will's first heart surgery was this morning at 7 am, and it was performed by the famous Dr. Bove at the University of Michigan in Ann Arbor.

We saw him early this afternoon, and all seems well so far. Dr. Bove was very pleased with Will's surgery. He tolerated the procedure very well, and his blood pressure, etc. was stable immediately after they took him off the heart & lung machine.

The next 72 hours are critical. His doctors' main concern is his kidney function post-op. It is always a big shock to the body after a surgery like his, and sometimes even in children with 2 healthy kidneys, there is kidney failure. As a precautionary measure, Dr. Bove inserted a dialysis catheder in his abdomen in the event his kidney cannot efficiently rid his body of the excess fluids and toxins. We will know tomorrow if he is experiencing any kidney problems, because this is when they expect him to start producing urine.

Will's Close Up

Our beautiful baby boy!

Josh, Will, Nurse Sarah, & Stephanie

Josh Holding Will For the 1st Time

Will's Baptismal Ceremony

Will 1 Day Before Surgery

Will

Will Sleeping

Our Brave Boy