The End Of Hydrocephalus Awareness Month

September is Hydrocephalus awareness month. I haven’t done much this year because it is not something that I like to think about. I hate worrying about Ty and his shunt and a malfunction and right now we are in a very VERY good place. I know that is not always going to be the case so for now we go on as though we have no worries in the world. BUT, I want to make sure that we don’t end the month with NO facts about hydrocephalus.

1 in every 1000 babies have hydrocephalus and is as common than Down syndrome and MORE common than Spina Bifida and Brain Tumors.

It is the MOST common reason for brain surgeries in children. 

There has been NO changes in treatment for over 50 years with no new treatment, or advancement  for a cure.

More research is needed to give better and more positive outcomes for those with this disease/condition.

There is no cure. 

There is no remission. 


Treatment is the same as it was 50 years ago. For every brain surgery your shunt has a 50 percent of failing within the FIRST YEAR of 50 percent.

If you were to buy a car and have it fail within the year the company would be out of business, but unfortunately, that is what these kids have to look forward to.

We will be participating in the hydrocpehalus walk in November here in Arizona and will be doing what we can do collect money for hydrocephalus.

We love our Brain baby. We wish him well with his shunt and are so happy to be in the place we are. We are still on edge when we start showing symptoms of malfunction, but we know we can do hard things.

We are proud of how well Tyler does when he is in shunt failure and how well he bounces back. We are proud of how well he handles the adversity that is put in front of him. He has so many things stacked against him and he always, ALWAYS, does his best.

A huge shout out of love to our favorite Neurosurgeon in the entire world. Dr. Walker. He has always been Ty’s biggest fan. And a HUGE shout out to Dr. Elton who decided to desert us here in the dessert and introduce us to Dr. Shafron who takes GREAT care of us and is a great help when needed.

Thank you, to those who support us financially when we do the walks and for those that support us when we go through brain surgeries. We are truly blessed to have Tyler be so great.

Education and research is needed to help those who are diagnosed with Hydrocephalus. And it takes a great person to be a brain surgeon!

Micro Preemies and Brain Bleeds

According to the March of Dime 534,000 babies are born premature in the United States each year. Babies born under 35 weeks gestation are considered premature. While the " preemie club" from a medical perspective include larger gestation preemies there seems to be a " sub" club. One that not many are a part of. Each year only 50,000 micro-preemies are born in the United States. A micro-preemie is generally considered to be born under 3 pounds and before 29 weeks gestation.

The later gestation preemies are at risk for delays and other "preemie" issues and it is a good idea as the parent of these later gestation preemies to be aware and be proactive in their development.

Sometimes, the members of the micro preemie club can be pretty harsh and not welcoming to the older gestation preemies. ( I know I am guilty) because as a 5 pound preemie and a 1 pound preemie the issues are far more extreme. Meaning the chance of something being "wrong" is less likely and the chances of US having delays is much greater, the ride of prematurity longer and the effects more lasting we tend to have bitter pants!

Long term preemie issues can be tough and it can also be a lonely place. One of the reasons is because those with Micro preemies do get grouped into the later group and everyone asks "well they are fine now right?" question. Well maybe at 34 weeks our kiddos are good to go and "catch up by 2" but at 25 weeks there are RARELY a preemie that has no lingering effects.

If you are in the Micro preemie club the dreaded words is brain bleed. Dreaded, because no one wants to know that inside their growing babies brain is a bleed, a bleed that causes damage. That bleed will leave your child with an uncertain future.

Brain bleeds are the largest cause for brain damage in a child. It is also the reason behind MANY Cerebral palsy diagnosis. For us, that brain bleed has left us with LOTS of days and weeks and months of an uncertain future.

Tyler was diagnosed at 24 hours old with a grade 3 and 4 IVH. I am not certain on the grade at the very start but the end result was a very very bad hemorrhage. Grade 1 and 2 leave usually no lasting effects and if they are lasting they are very minimal. But grade 3 and 4 touch brain tissues and leave a damaging hole in its path.

His heart defect known as a Patent ductus arteriosis needed to be closed to help regulate the blood pressure in his body. The lower the blood pressure the less pressure on his already damaged brain.

At a small 1 pound 11 ounces and just a few days old Tyler underwent heart surgery. It was a surgery to place a titanium clasp on his defect to help close it off. The surgery was done at his bedside. By the time I walked back to our room and had a little breakfast Dallas was already back telling me that they were done and Tyler did pretty well.

His bleed would be the cause of many heartaches and sadness in the coming years but it would pose many health risks as well. His bleed was the result of his hydrocephalus. Having hydrocephalus and draining out fluid in the NICU was the cause of his Craniosynostosis and now at 4 his hard time walking and cerebral palsy and lack of speech is a direct result from that faithful day we were told he had a brain bleed.

One thing we do know is that we are one of the lucky ones where we did get to see our child walk. While getting all of the information we could in the NICU we were told of the possibility that Tyler would be in a wheelchair. While this is still a possibility ( he doesn't have the greatest ability to be stable all lone or without assistance) it hasn't been the case for Tyler yet. He is doing things that most kids with this degree of damage.

We are very proud of him. "Most" Days he works really hard at therapy. He is wonderful at being a kid. He is generally happy, loving and I love him SO much.

Prematurity Awareness: IVH

By day 3 of our Micro preemie journey Tyler was diagnosed with Brain Bleeds or Intraventricular hemorrhage I remember going in to see him and a whole team of doctors came over to his bed and asked me if I wanted to sit down. I told them no, but tell me what they wanted to say. I remember them start telling us that he had bleeds. They were using big words and I knew what all the words meant from school but all I heard was " sick, dying, unsure of the future." Of course they were not in one sentence but several sentences. I thought I was going to be sick . I remember asking them if I could sit down. I was going to faint. Doctors and nurses jumped into action and all I could think of was Tyler and Dallas.

What is an brain bleed or IVH?
Intraventricular hemorrhage (IVH) means bleeding into the normal fluid spaces (ventricles) within the brain. IVH is also used to refer to bleeding in areas near the ventricles even if the blood is not within them. The extent of IVH is graded:

• Grade I - Bleeding confined to the tiny area where it first begins
• Grade II - Blood is also within the ventricles
• Grade III - More blood in the ventricles, usually with the ventricles increasing in size
• Grade IV - A collection of blood within the brain tissue, also called intraparenchymal echodensities because of its appearance on the ultrasound picture. This can be seen with grade I, II, or III hemorrhages. It reflects brain injury.

Grades I and II are most common. They usually do not cause identifiable brain injury. The blood is slowly absorbed by the body. Babies with grade III IVH are at increased risk of brain damage, but many are normal or near normal. Babies who have needed treatment for hydrocephalus, those with continued enlargement of the ventricles, and those with grade IV IVH are at a very high risk for permanent brain injury.
Ty was diagnosed with a 3 and a 4. Obviously not the best case scenario. We knew that. It was a done deal there was nothing we could do to change that. At the time we were given worst case scenario. That is what we had to be given. That is all they knew to expect. Text book case.

Why do these little babies get bleeds?

The brain is still developing. The area where IVH usually begins has a very fragile network of tiny blood vessels. These burst easily causing the bleeding. The more premature and the sicker the baby is, the greater the risk that he/she will develop IVH. The infants at the highest risk are those weighing less than 1000 grams (2 1/4 pounds).

Ty was 750 grams and a whooping 25 weeks. We had no advance warning. We were prime candidates for bleeds.

Not only does bleeds cause brain damage it also has other effects that come with it. Who knew we would be lucky enough to experience that "roller coaster" as well!

Complications are most common with grades III and IV IVH. The most frequent complication is hydrocephalus or too much fluid collecting in the ventricles. This extra fluid may cause:

• The baby's head to grow more rapidly than normal
• Pressure on the baby's brain

By the time he was ten days old doctors notice his head growing at an increasingly fast rate. The neonatal team sent our information to the children's hospital to decide if we were going to need to be transferred.

There are not many options for treating Hydrocephalus. These are the things that are available:

• Medicines to decrease the amount of spinal fluid that the brain makes. Many infants do not respond well to this treatment.
• Frequent lumbar punctures (LPs). In an LP, a needle is put into the spinal canal in the lower back and fluid is withdrawn. This therapy will not work if a clot is blocking a channel. The baby will need another way of removing the fluid like a reservoir or shunt.
• A reservoir. This is a tube placed into one of the larger ventricles that then connects to a chamber. The chamber may be placed under the scalp or outside the scalp. Whenever necessary, fluid can be withdrawn from the chamber by a needle. This is usually a temporary solution to the problem and the baby may need to have a shunt placed later.
• A shunt. In this surgical procedure a tiny tube is placed into one of the two larger ventricles. It attaches to another longer piece of tubing. This connection is behind the ear, under the skin. The longer tubing continues under the skin, down the neck and chest to the baby's abdomen where the fluid can be absorbed. Sometimes a baby will need a temporary shunt first. The temporary shunt connects the fluid from the ventricles to the space under the scalp (subgalial shunt). When the baby is larger or healthier this is replaced by the permanent shunt to the abdomen.

The option we were given was a reservoir. Instead of shunting we were hoping to get his brain working and draining the fluid on its own. It was a scary time. Full of the unknown.

For those experiencing a baby with bleeds as they get older a few things will show up that will raise a red flag to you that there is something wrong.

Serious abnormalities that may appear are:

• motor (movement) problems:
• tight or stiff muscles
• slow to crawl, stand, or walk
• abnormal crawling, toe walking
• moving one side more than the other
• frequent arching of the back (not just when angry or at play)
• slow mental development:
• does not listen to your voice by age 3-4 months after hospital discharge
• does not make different sounds by 8-9 months after discharge
• doesn't seem to understand or say any words by 12-13 months after discharge
• seizure also called convulsions
• deaf
• blind

Less serious problems appear more slowly, are more difficult to detect, and may not be obvious until preschool or grade school. These can include:

• poor coordination or balance
• specific learning disabilities (math or reading)
• very short attention span
• behavioral problems
• difficulty with activities that require coordination of the eyes and hands, for example, catching a ball or copying a simple drawing
• need for glasses

No doctor or nurse can tell you what your baby will be like. No bleeds are exactly the same. No one can tell you. It is the phrase that would make you rich in the NICU " wait and see."

Next up! Our transfer to PCMC and surgery again!

I have no Idea how to share this one...

I have been told that I am negative towards my child. I have been told I am hindering HIM and what he can be. Although I disagree with those statements I truly feel that I have had a realistic outlook on his life as a preemie and the long term issues that we would be facing.

When we found out we were pregnant I was still determined to start at the U and finish my degree fro Child development and get my certificate for child life specialist. I had the same instructor for 3 of my classes and I was really looking forward to my classes.

The first week of school came and I was doing better at not puking during classes (of course after class and in between was a different story) but I let my teachers know that I was pregnant and that I was actually going to be able to have the baby the day of my last final. That was what we thought.

Fast forward a few weeks.. We are getting ready for our first test and we had to cover prenatal stuff. We were learning about the age of viability. We were taught that according to our text book it was 25 weeks. That was the *magical* age. We were taught of the outcomes and the hardships.

Then came *that day*. I was 25 weeks. In fact I was 25 weeks and 3 days. I was VERY sick and I was paranoid but there was something wrong and I felt it. The rest of it is history. Ty came and we started on our journey.

Some issues we faced were:

PDA
IVH
Hydrocephalus
ROP
Craniosynostosis

After the PDA was fixed it was fine. We have had no other issues with his heart. We still don't see a cardiologist.

The Brain bleed was severe. It is severe. He has a grade 3 and 4 bleed. We had no idea what our outcomes would be because of it. We were told many things. But we were told that no one could predict what he could do. That is what we held onto. We jokingly talked about pimping out his wheelchair if it came to that. AND then the relief when he was determined to crawl and now he is determined to walk.

We though the hydrocephalus was resolved but after the reservoir was taken out we had our complications. He had a emergency shunt placed and then revised. Nothing since.

The ROP was severe and was treated with laser surgery. We were warned of the chance of CVI and yet some how we escaped that diagnosis. Even with the bleeds.

His craniosynostosis was a direct result from his prematurity in which we fixed and feel like we have dealt with that the best we know how.

What long term issues?

Ty has a limited vocabulary. BUT we are working on it with speech therapy. They say his receptive language is actually above average. Meaning he will do whatever we say.. Which is true. He follows directions so well and is VERY well behaved. PLUS he says and mimics some of the absolutely cutest things. Makes your heart melt.

He has a few sensory issues. All of which are a dramatic change from who is was last year. He won't scream when we vacuum and he eats just about whatever you put in front of him ( especially chocolate) he even tries just about every thing. He has even enjoyed a few shrimp scampi!! He is getting use to noise but that one.

We will always deal with the shunt on a as needed basis. So for us it is not big deal and we deal with it when we need to.

His eyes. Well they tell us he is legally blind. But then as we go back and do his therapies his eyes improve and we can see a huge difference in him. So we will just plug along doing what we need to do.

The biggest is his mobility. Although he took his time hitting his milestones he has some spastic muscles. Although he falls in the normal range and no one can decide on what to *call it* The neurologist feels it will just all fall into place and the PT we are currently seeing is helping us a lot.


So those are the long term issues. Not such a bad list right. RIGHT!!! WE are so happy with his progress and the things he is doing. So, after all the list... I took Ty to PT today. He is doing so well with this new place. He LOVES the swing there and we were working on his walking today with his AFO's. After we got them on the PT wanted to "try" the pediatric walker. She said that it usually takes kids a while to get use to them and to use them. We raised it up to the highest setting and set Tyler in. You will never guess what happened!!!! HE CRUISED CLEAR ACROSS THE ROOM. He did amazing. His left side of his body is a little less strong so we will be working on that but we have decided that for Ty and his mobility he is getting a walker. The PT doesn't think we will use it long, but if we do we do. I was so proud to see him walk. He has now exceeded EVERY expectation of the HORRIFIC Nurse practitioner that we had and he is continuing to do more than we could ask for. We are so proud of him.