Here is the latest on our family...

Sunday, November 30, 2008

Day 5

We spent much of today sharing the good news of our MRI result with friends and family in person and on the phone.  Of course, we also got to spend quality time with our beloved Hank.  Although we know that Henry still has a long way to go, Meade and I are both feeling relief and elation that his chances of having a healthy childhood appear to be very high.  

Once again, we had many visitors.  Many thanks to the Doyles for sending Angela with an armload of tasty and nutritious food.  We were also delighted to see Susie and the other Sean who stopped by en route from Bloomington, IL, to their home in Colorado just to see Hank.  

As Hank's medication levels drop, we are seeing increasing activity from him.  We each spent time holding him and offering him a finger to suck.  His sucking is probably not strong enough for a bottle, but it is another step in the right direction.  It will be stronger tomorrow.

They removed the cannula today, so he is breathing without any assistance at all.  This also means that we can see more of his beautiful face.  His vital signs were strong all day – no alarm bells!  

Some of today's visitors






Holding Henry







The chin





MRI results

At rounds this morning, we learned that all of Henry's levels are either normal or very close to normal.  He is still free of clinical seizures.  

Our pediatric neurologist arrived rather unexpectedly and told us that he would go over Hank's MRI results after rounds had finished.  After a few anxious minutes, we learned:

The MRI shows NO evidence of hemorrhage.
The MRI shows NO evidence of stroke.
The MRI shows that the vessels going in and out of his brain are still clear.

Basically, we got the best possible news.  

There are still two concerns:
1.  We need to continue to watch for seizures as his medication levels continue to reduce.  We hope that he'll be seizure-free.
2.  Henry's head is growing too quickly.  This is due to that fact that his body (and the human body, generally) is really good at producing and absorbing spinal fluid, but not so good at clearing blood from the brain.  The blood is being cleared out, just not as quickly as new spinal fluid is produced.  Since his passage ways are clear, we are hoping this problem will resolve itself.  If his head continues to swell, however, we may need to consult with a neurosurgeon about putting in a shunt.  

Henry's uncle Ross has been living for 30 years with a shunt, and we all know how well that has gone.

We hope to begin giving him Meade's milk starting tomorrow.  The nurses will be using his feeding tube until his sucking reflex gets strong enough.  

I'll post pictures later.

Saturday, November 29, 2008

Day 4

Status update

Each day is better than the last.  We were able to attend the "rounds" for Henry this morning, and we learned the following:

Henry now has, as the neonatologist put it, "brisk urine output."  This means that he is peeing like a race horse.  Due to stress on his kidneys, he was retaining water.  Apparently his kidneys have healed, because they had to give him oversized diapers to contain the flow.  

He remains clinically seizure-free.  In other words, his brain may still be having some seizures, but they are not manifesting themselves in ways that we can observe.  This is a good thing.  

As his seizure medicine levels fall, he is becoming less limp.  He even had some normal baby motions, yawns, and sighs today.  Although his responses to stimuli are still fairly minimal, there was marked improvement over yesterday.  Even his basic lying postures show improved "tone," meaning that he is neither clenched in a seizure nor limp like a rag doll.  His skin is radiant.  

His favorite position today:



Henry went for his MRI today at around 7:30 PM.  We were told that he did very well and that they were able to capture many, high-quality shots of his brain, veins, and arteries.  We will most likely get the results on Monday.  The MRI room was a bit cold, and his body temperature had dropped some during the test, so Meade and I got to hold him to warm him up:



Thanks to all of our wonderful friends and family!

Once again, we enjoyed the support and companionship of many visitors.  Our friend Mike even brought us a homemade pizza!  

Here are photos of some of the people that visited Henry today:


Shhh, good night, Hank


Day 4 morning

Henry had a good night last night. His nurse gave him a bath, he yawned, and he flinched when she stuck his heel. We're headed out to see him now.

Friday, November 28, 2008

Day 3

We arrived early this morning to find Henry sleeping peacefully on his side.  
For the first time, he looked comfortable and appeared to be sleeping soundly:


Henry had his second EEG today. We discussed the results and a lot of other questions that we
had with the pediatric neurologist, neonatalogist, two residents from Children's Memorial
Hospital, and the OB that delivered Henry.  The EEG showed improvement over the first one from 
Wednesday. His results are not yet normal, but at least we are headed in the right direction.

Henry has a brain injury, the details of which are not yet known. We cannot heal Henry's brain, 
he has to do that himself. This healing will be a tough job, but babies are capable of miracles.
The only thing that we can do is ensure that Henry has the best possible chance of healing.

The overall strategy for helping Henry is this:
1. Control his seizures.
2. Get him eating real food produced by his loving mother.
3. Monitor his development.

Within the next couple of days, Henry will have an MRI. Given that the initial CT scan showed blood
in the intraventricular area of his brain, we will look for the MRI to answer three basic questions:
1. What areas of his brain have experienced ischemia?
2. Are the passages for allowing blood to leave the brain clogged?
3. Are the passages for circulating spinal fluid clogged?

The answers to these questions will not alter the current strategy for helping Henry, it will simply give us more information about what he is experiencing.  

Other good news is that Hank's kidney and liver functions are returning to normal.  Our neonatologist is no longer concerned about them.  This is a good indicator that even if his intestines were also damaged, they will heal.  He should soon be ready to drink his mother's milk.

Henry had many, many visitors today. Here are pictures of some of them:

Isabella and Will Doyle stopped by with their mom and dad, Angela and Mike.


Gramma Judy got to say goodnight.


And perhaps the best news of all, we finally got to hold him!


Day 2

Today, Henry began breathing on his own. He had been progressing well throughout the night, and they removed the breathing tube this morning. His seizures continue but seem to be less frequent and less severe. He is receiving great, attentive care from a wonderful, dedicated staff. Once his seizures are under control, he'll be getting an MRI.  We're looking for that to happen on Friday or Saturday.  Meade and I are holding up well.  

Here are some more pictures from Henry's second day:


Thursday, November 27, 2008

Day 1

Henry was born at 7:01 AM on November 26.  Meade's labor was long (36 hours, give or take a few) and hard, but uncomplicated and drug free.  Henry was 8 pounds, 9 ounces at birth, and was a beautiful baby from his first minute out of the womb.  Although he immediately turned nice and pink, he did not gasp and cry the way that the doctors wanted him to, so he was taken away to an infant care unit for what we expected to be a very brief period of observation.  Before he was taken away, I was allowed to cut the umbilical cord, and Meade held him for a few moments.  

What is his name?

We had chosen two names (No, we are not revealing the other name.) with the plan to look at him and decide which name better suited him.  Since he had been so quickly whisked away, we weren't sure which to use.  I ran up to his room to take some pictures so that Meade and I could select his name while the doctors finished their observations:  (His toes are dark because the staff made ink footprints for us.)


We decided upon "Henry Louis" with the option to use the nickname "Hank," a name we also really like.  

After we moved to a post-delivery room, we learned that Hank's problems were a lot more serious than anyone had initially suspected.  He stopped breathing completely on a few occasions, and he began to have seizures.  A CT scan showed that he had blood in the subdural and intraventricular areas of his brain.  The former condition is fairly common in newborns, but the latter is rare and indicates injury to the brain.  

Hank was connected to a device to help him breathe and administered drugs to try to get his seizures under control.  We are able to see him whenever and as much as we want, and we are permitted to escort a single visitor in to see him at any time.  

He looks so healthy and beautiful!  Looking at him lying in bed, you cannot imagine that he is sick.  He has a cleft chin, long fingers and toes, radiant pink skin – he is truly a magnificent sight. His jerky movements and labored breathing demonstrate that something is amiss, however, and we will spend as much time as is required to understand the details of his condition and what we can do to make him better.  The initial focus of his care is to get him stabilized so that he can undergo an MRI.  This test will hopefully help us to understand the extent of the injury to his brain.  

We appreciate the enormous show of support from family and friends.  Your thoughts and prayers are keeping us going in this trying time.