22 Sep 2011

Hydrocephalus and The Future

When we found out about our son having hydrocephalus we tried to focus on the information provided by our doctor.  We didn't alert the masses to tell them what had transpired a couple of days after his birth.  Firstly, we didn't want the stress of trying to explain what was going on, over and over to friends and family.  Secondly, we didn't want people researching the condition and scaring us with their findings.  Thirdly, we didn't want pity.  And finally, we (I) didn't want negative energy being aimed at our little boy, negative thoughts, negative concerns, the scary what ifs, and so on.  I wanted to try to remain as positive as possible, because I do believe that even 27 weeker little premature infants can feel and understand negativity.

Our direct family and a few friends were told about what had happened and our request to keep it private was upheld.  It was good to have the support of our direct family, as that was what mattered most at that time.

Eventually, we did get on the Internet and started a bit of research at recommended websites and so did our family.  The information really did freak out some family members.  Given the fact the NICU only allowed us, the parents, in to be with the babies, it was very hard for the grandparents and uncles and friends to understand what we and Baby B were going through.  How Baby B was looking, acting, family couldn't see this.  Pictures reflected a very small baby, with a very enlarged head.  These pictures were probably frightening to those who had not been able to see the baby with their own eyes and see he seemed to be fairing well.

In the long run, what we learned through information from the neurosurgeons, neonatologists and staff, was that each baby is different and hydrocephalus impacts each person differently as well.  Some babies may never be able to speak or walk.  Some babies will have long term, regular complications, whereas some babies have a corrective surgery and never have to go through it again. 

After a surgery is done to complete a shunt insertion, for example, there is the risk of infection or malfunction. 

For all of these things, only time will tell.

The neonatologist and neurosurgeons gave us stories of people with hydrocephalus growing up and living perfectly normal and happy lives.  Telling us many will attend university and so forth. 

They also told us that on a rare occasion hydrocephalics' bodies can actually heal themselves over time, blockages are cleared and the CSF begins to flow normally from the brain and up and down the spinal column.  This seemed to be one of those stories being told to us just to try to make us feel better about the situation, yet it did give us hope.

Then one day this month, I met a lady who told me her son had hydrocephalus.  "He does??" I exclaimed, "So does mine."  She looked at me like I was speaking another language, taking in what I just said.  I told her the basics of our experience and she was amazed, as I was basically describing her experience which had taken place 33 years ago.  Her son was born at 28 weeks or so and he was found to have hydrocephalus very quickly while in hospital as well.  He had a shunt inserted and had a few corrective surgeries by the time he was 3.  She then told me he was monitored by a pediatric neurosurgeon while he grew up.  At the age of 18 he was transferred to an adult neurosurgeon in Toronto.  When she and her son met this new doctor he completed his assessment and ran some scans and revealed to them that his shunt was not working.  Of course this worried them to hear this news, when all along they thought everything was fine.  He then said something like, "Did Doctor So-and-so not tell you your shunt is not working and it doesn't need to work anymore because your body is working for you again?"  I can only imagine the relief this mother would have felt!  That is an amazing and inspiring story.  I guess miracles do happen, dreams do come true and stranger things have happened.

I was able to meet this woman's son, who is the same age as me.  I met him yesterday and was able to talk with him about how he felt when growing up.  He told me he was not allowed to participate in contact sports, such as hockey.  Growing up in Canada and not playing hockey might be challenging for a kid.  He was not allowed to participate in any physical education activties and had to sit on the sidelines.  He was told as a child he couldn't do these things for fear of shunt malfunction and/or getting hit in the head with a ball, bat, hockey stick, puck, whatever...He went on to tell me that he was often delayed in many areas his peers were not.  They were hitting milestones at the right time and he wasn't.  He said eventually it got to the point he felt very excluded from his classmates, he wound up sitting in the back of class because it was harder for him to learn some things and he began to dwell on his condition and found that to be very hard.

He gave me advice and that was to avoid treating our son as someone "different."  To try not to over-protect and shelter him.  To get him out and active in his community and let him try things (within reason.)  He said he didn't blame his mother for over-protecting him, as she was young at the time, single and did her best to protect him and keep him well.  He also pointed out times have really changed in 30 years. 

When this man was born, his young, single, alone mother was told that it may be best to institutionalize him, as he would never walk, never talk and never be able to function like a "normal" child.  She did not take the doctors' advice and said she was determined to prove them wrong.  She did a very good job in proving them wrong, I think.  He walks, he talks and is healthy overall.  Then he goes and does the amazing and grows out of the need of his shunt.

He did tell me he finds it difficult sometimes dealing with math and that he does suffer from bi-polar disorder, which may or may not be attributable to some long term damage to his brain.  No one really knows.  He also had a mild shake in his hands. 

He says he is happy to share his story, as he did live a hard life in many ways, and if he can help others along the way, then it's worth it.

I am very grateful to have met this man and I now have a very well-rounded knowledge of what can happen and how to overcome any obstacles that may come our way.

21 Sep 2011

Hydro...what??

In the United States the month of September is Hydrocephalus Awareness Month.  "Hydro...what?" you ask?  Hydro-seff-ah-luss.  I've recently read in other parts of the world it is pronounced, "Hydro-keff-ah-luss."  However you pronounce it, it's still the same thing...a lifealtering, potentially deadly condition of the brain.  Hydrocephalus comes from the Greek for "water on the brain." 

This time, two years ago I wasn't yet into my second pregnancy.  This time, two years ago I didn't know in 8 short months I'd be having twin babies born 3 months early.  This time, two years ago I didn't know the word, "hydrocephalus."

Fast forward to May 3, 2010, our second full day in a Level III Neonatal Intensive Care Unit.  I can recall this day, as though it happened only a few hours ago.  I can recall my steps to the wash basin to clean up my hands.  I can recall the hush in the unit as we entered our babies' bed area and the quick glance that came from our neonatologist, who was standing by Baby B's bed.  I can recall my husband mumbling under his breath that this doesn't seem good.  I remember trying to be optimistic, saying, "Maybe he just wants to update us on things?"  More of a question than a statement.

The doctor briskly came toward us.  He handled it well.  He did not approach us in a rushed, worried manner.  Instead he greeted us by first names and asked us to come into a private room.  He was calm and collected.  Of course, as soon as he invited us in to the private room, we knew we weren't being updated on the morning's routine details.  He had a social worker in tow and the nurse on with the babies.  Not a very good sign.

The doctor said that one of our babies had just experienced an intraventricular hemmorhage and pulmonary hemmorhage simultaneously.  Hearing this was terrifying.  The doctor advised us he had actually been at his bedside when the baby started to take a turn for the worse.  The baby's appearance had quickly become very ashen (grey) and he appeared to become rigid.  That's the way he described it.  He didn't go into detail as to whether or not he had physically done something to try to help the baby through it, but realistically I'm not sure that anything can be done in such a situation, except to hope the baby pulls out of it.

As we were only two days into our long stay at the hospital, we were still taking the trip back home nightly, so we felt terrible knowing we were not there when one of our babies was going through one of the biggest challenges of his life at only 2 days old.

I think the shock of being told the details kept me and my husband calm.  I rationally asked questions.  Why does something like this happen?  What does an ultrasound or xray show now?  What's the prognosis?

We talked for probably a good forty-five minutes in the private room, just to the side of our twins' bedsides.  The social worker took notes.  The nurse ensured we understood the doctor's medical lingo and broke things down in layman's terms as needed.  The doctor drew diagrams of the brain and the spinal column.  He drew a normal brain and the ventricles and an example of how our son's was appearing.  His was pretty much filled with blood from the hemmorhage.  Now we had to wait and see if the body could naturally clear the ventricle.  If the blood could not clear, surgery may be required.  A VP (Veintriculoperitoneal) Shunt may need to be inserted by a surgical process.

I remember during this time, the sound of the monitor bell alarms going off was extremely distressing to me in my mind.  I didn't want to be sitting in this closed off box of a room.  I wanted to be at my twins' bedside and see how the one baby was looking.  By this point he was less than the 2 lbs 4 oz he was when he was born.  A tiny little skinny thing, with nothing but potential.

Right from the day we arrived in the NICU we had asked the doctor not to scare us with all the maybes, what ifs and possibilities of anything long term for our premature boys.  Given this new chain of events, I really wasn't interested in knowing what the future may hold in connection with this new condition we were dealing with.  I wanted to deal with the here and now and not the various possible outcomes.  We repeated over and over again during our stay, "One day at a time,"  "One step at a time,"  "One step forward, two steps back."  The third one is really depressing to think about, but various versions of that were said very, very often.

The next three months would be a rollercoaster ride of fear, tears, pride, smiles and at last, relief.  Our little man had 2 surgeries before he was 2 months old...before he was even due.  He was a fighter and continued to surprise everyone with his ability to recover.

Initially he had a ventricular reservoir inserted into his right front ventricle, which acted as a small place to hold excess cerebral spinal fluid (CSF) and help (a bit) to alleviate some of the intracranial pressure.  The fact that the ventricle was blocked was causing the CSF to back up in the brain, causing head swelling.  He somewhat resembled The Great Gazoo (you know, from the Flinstones?)  His head circumference was enlarged because of the swelling and although it looked terrible, he seemed to be comfortable usually. 

The intention of the reservoir was to help extract excess fluid by "tapping" the reservoir every now and then.  The hope was that the reservoir would buy time for the body to heal itself.  Every time the baby's head/reservoir was tapped, it ran the risk of exposing him to infection.  Eventually it got to the point that doing reservoir punctures and lumbar punctures to extract fluid were not productive enough to make doctor's feel a VP Shunt was not needed.  So just before his actual due date he had his second surgery and a VP Shunt was inserted.

After surgery he was awake as they wheeled him out in his tiny little plastic transport box on a stretcher.  The doctors had said not to expect him to be awake for potentially several hours after the surgery, but there he was looking up at us as they wheeled him out.  There was a huge sense of relief.

Unfortunately, about 3 days after his surgery he was so tired out from his surgery and having been put back on full feeds pretty much immediately after surgery (the same day.)  It seems we pooped him out and he couldn't handle full feeds and all the energy he needed to keep them up.  He was nursing with me and not on a bottle.  Eventually, we had to take a nurse's recommendation and get him onto bottle feeds to help him pace himself and possibly be more comfortable at feeding times.  He had begun to cough, choke, sputter and forget to breathe when he was nursing and/or bottling.  It was so frustrating to have a baby who was nursing 100%, amazingly well the day before surgery, only to have a baby who now had to re-learn it all.

Eventually it got to be that he was losing weight and having such a hard time taking a bottle that he was burning more calories than taking in.  At that point in went the NG (naso-gastric) tube into his nose and down to his tummy.  Now he was back on "gavage" feeds, running his milk through a syringe and tube into his stomach every three hours.  This was disheartning.  Depressing.  Frustrating. Yet, he began to gain weight again, so at least it was serving a purpose.

Slowly, but surely over another 3 and a half weeks, we worked at getting him to take a bottle and/or nurse effectively.  It was a trying time, but I was confident in my skills as a mother and my son's strength, and knew that with the right amount of patience and the right environment we would be fine.

Wow, this is turning into a very long post.  I have so much more to say...so I will have to do another blog very soon.

I will continue my story and discuss the discharge, as well as talk about meeting another individual with hydrocephalus who has beaten many odds...

12 Sep 2011

The Apnea, Bradys and Chaos of a NICU, Preemie & Multiple Mom

Given that kids are back to school now, I thought I'd join the crowds and come up with a "scholastic" sounding blog title this week (it has taken me over a week to actually get this done and posted.)  I have been back at my full time work for almost two weeks now, which has also added to my serious delay of posting this.

At this time my kids are not actually school age yet, so that's where the school aspect of this blog pretty much stops!  Technically, my 3 babies, husband and I are graduates of 3 NICUs, so let's go with that...based on this maybe we should be candidates for an honourary degree somewhere??

The following are the ABCs of life as a mom with premature children, NICU life and twins/3 boys.

Here it goes...

A is for Apnea (of prematurity.)  Apnea is when a baby (or person) experiences a pause in breathing that lasts 15-20 seconds, is associated with a baby turning blue/purple or pale and/or is associated with a slowing of the heart rate (called a bradychardia.)  Apnea is common in premature infants, as they have not yet developed fully mature lungs, making it more difficult to carry out the process of regular breathing.  It can be caused by infection, brain injury, PDA (see below,) low blood sugar, high or low body temperature or insufficient intake of oxygen.  Alarms will sound when a baby's oxygen levels dip below their desired settings. 

B is for Bilirubin.  "What is it? Bilirubin is the byproduct of the body’s recycling of red blood cells. As the excess red blood in the infant’s circulation begin to breakdown in the first few days after birth, they release what is called bilirubin, which causes the yellowish coloring of the skin and eyes. Bilirubin is normally processed by the liver and excreted in the stool.  Bilirubin levels in premature infants are often higher because preemies cannot breakdown their red blood cells as fast as a term baby and they’re immature livers cannot excrete the bilirubin as quickly as full term infants can.  This becomes a problem because high levels of bilirubin become toxic to the baby’s nervous system.  A premature baby’s nervous system is more vulnerable to the toxic effects of bilirubin so it is important that these levels are closely monitored, especially in the first days of life."
From http://www.peekabooicu.net/2011/02/neonatal-jaundice/. "Is Your Fellow Yellow?"
This website is a great resource for family or friends of a NICU baby. 
Our 3 preemie boys all bear the small scars of numerous bilirubin heel pricks, which were done to extract blood to assess their Bilirubin levels many times.

C is for CHAOS! Not a day goes by where the house is not a mess, baby bottles are stacking up in the sink or any clean surface waiting to be washed.  We are running from appointment to appointment, running... running...running!

D is for DISCHARGE.  This refers to the doctor's order to finally send your baby home.  One of the most memorable moments of the NICU life.  The best moment for sure!

E is for Ears.  Getting babies' ears and hearing assessed several times in the first year of life for a very low birth weight child is the norm...or should be.  If you haven't had your baby's hearing tested a minimum of two times in the first year (first one while in the NICU) you should ask your pediatrician or doctor following after care to refer you to an audiologist.  During the first year of a premature or low birth weight child's life is when hearing impairments may crop up.  Best to be safe and check things out.
If your child gets a "refer" following their in NICU hearing test, don't fret.  A "refer" is a nice way to say "fail." LOL.  Although your child's hearing may be perfectly fine, for some reason the contraption used in the NICU didn't get a very good reading.  The reason may be as simple, as the tools weren't used properly (nurses are human too)...maybe something as simple as not being placed in the ear canal properly.  One of our children got a "pass," the other a "refer."

F is for Fatigue.  I have done the mommy of one premature child experience.  I have done the mommy of one 2-year-old + two premature children experience.  I jumped from one boy to three boys in less than 2 years.  I recall my first maternity leave as a time when I was pretty well-rested, I napped when baby #1 napped in the day, slept in the night when he slept.  Our lives were altered, yes, but absolutely nothing like they were altered when baby # 2 and # 3 arrived all together.  Fatigue, exhaustion, mentally, physically and emotionally drained are all terms that come to mind.  Thankfully our first son is a sound sleeper, who sleeps through the entire night.  The twins were the usual kind of babies once home from the NICU.  They wanted to eat based on the hospital routine of every three hours.  They were conditioned practically from day one to be fed this way.  It is alright for a while...but when I was nursing both babies, it was me who had to get up in the night every 3 hours.  I would wait until 1:00 AM to go to bed sometimes.  Since the babies would have their "last" meal at 9:00 PM, before most people go to bed, I was not ready to be in bed at this time, so I would stay awake until their 12:00 AM feeding time.  They'd be done by about 12:30 and I would hit the sack...only to wake up again by about 2:50 to go in get each baby out of bed for 3:00, one after the other, nurse them as quietly and quickly as possible and go back to bed by about 3:45.  Of course not every feeding time went off easily or quickly, so sometimes I wasn't getting back to bed even by 4:00...to get up again at 6:00.  Most of the time I was so physically exhausted that as soon as my head hit the pillow, I'd be sound asleep.  I was probably half sleepwalking to begin with on many nights, to and from the babies' room.  These days, now that we are done with nursing and they are eating solids and having maybe 4 or 5 bottles a day, we are all pretty well-rested.  Thankfully, I have 3 sound sleeping little boys.

G is for Gavage feeding.  A gavage feeding is the practice of feeding a baby by pouring formula or breastmilk into a syringe, which is attached to either a NG (Naso-Gastric) Tube, which goes through the nose to the stomach or an OG (Oro-Gastric) Tube, which goes through the mouth to the stomach.  Gavage feeds are often done when a baby is not yet strong enough to nurse or take a bottle.  Sometimes it is used to help supplement feeds.  They are often used in the early days when a mother is not able to be at bedside around the clock, especially in the late night/early morning hours.

H is for Hemmorhage...intraventricular (brain)...pulmonary (lungs)...It is not exactly known why preemies tend to suffer brain or pulmonary hemmorhages.  It is thought that if the child had a traumatic delivery, this could play a role.  If the baby was born in a hurry, such as my 3, then they may have had a bit of bumping around or pressure do to their quick exit.  It is hard for doctors to be 100% certain.  My Baby B was turned by the doctor, using an external method with his hands on my stomach.  Perhaps this is why he had his intraventricular hemmorhage.  We will never know.  An IVH can lead to Hydrocephalus (another H,) which simply put, is the build of up Cerebral Spinal Fluid (CSF) in the brain, which is unable to naturally flow up and down the spinal column.  Blood remnants following an IVH, can "clog" the process, causing brain swelling and most likely surgery.

I is for Indomethacin vs. Ibuprofen.  Two drugs used to attempt to close a Patent Ductus Arteriosus.  The PDA is a heart defect that is identified when the Ductus Arteriosus does not shut within a few days after birth.  It is more common for premature infants to have a problem with this duct shutting and it is often medicated to try to assist in its closure with either Indomethicin or Ibuprofen (not the kind in your cupboards!)  It depends on the hospital's opinion or protocol as to which medication type they will use.  A more detailed description of the PDA and why this is a problem can be found here http://www.nhlbi.nih.gov/health/health-topics/topics/pda/.

J is for Jack of All Trades.  As a preemie/NICU mom you will become your child's (childrens') advocate.  You will begin to develop a wealth of knowledge in all areas...areas which you never even knew existed before arriving in your current situation.  I, myself, have become familiar with NICU medical jargon, health conditions, developmental stages, social services available, assisted services available and all kinds of medical professions.  This is why you will become a Jack of All Trades (Master of A LOT!)

K is for Kilogram.  This is a measurement of weight we refer to in Canada...The metric system.  Although the majority of the world uses the metric system, you will still find many of us Canadians talking pounds and ounces and looking very perplexed when someone throws out a weight in kilograms.

L is for Lumbar puncture.  A lumbar puncture is a process of withdrawing cerebral spinal fluid from the spinal column.  The puncture is done with a needle being inserted into the lower area of the spinal column.  The fluid is extracted for the purpose of checking for infection or to alleviate excess CSF buildup in the spinal column/brain, which will cause hydrocephalus (fluid buildup in the brain's ventricles.)

M is for Monitor.  If you have never been in a NICU, it would be hard to understand how to this day a parent that has been in a NICU can recall the exact sound of alarming monitors.  From the slow dings to the repetitive, very fast pace dings, the sound can make the hair on the back of your neck stand up.  A parent that is new to the NICU will feel like they are on pins and needles when alarms are sounding.  Soon a parent will become accustomed to what the slow dings mean to the fast paced "get over here now" alarms mean.  It doesn't mean you are ever really 100% comfortable with the sounds constantly going on around you. 

N is for Nurse, of course.  The nursing staff in tertiary NICUs are the best of the best.  They have excellent educational backgrounds and extensive hands on training and knowledge prior to moving into a NICU.

O is for Occupational Therapy.  The OT is a person that assesses a baby's neurologic development (brain) and helps implement plans to assist a baby's overall development, improve a baby's muscle control and address possible feeding problems.  All three of our boys had an OT while in the NICU.  Baby #3 had the most attention from an OT.  Following his second surgery for hydrocephalus, he forgot how to eat!  He needed help with positioning his head on a butterfly pillow.  He needed help with learning how to "suck, swallow, breathe" again while nursing or bottling.  He had to learn to hold his head with a shunt.  It was very difficult to watch and go through with our little guy.  The OT made it easier with many comments, suggestions and a listening ear.  It was like we were a team, trying to think up the best ways to get this little boy to develop well and get the heck out of that hospital as soon as possible.  The final thing holding us back from going home was to get him to remember how to "suck, swallow and breathe."

P is for Physiotherapy.  This is a specialist that pays attention to a baby's coordination and large motor skills development.  Thankfully, we were referred to physiotherapy and occupational therapy even before discharge.  Due to our twins very premature arrival, it was expected that the babies would most likely need some assistance with their development over the first few years.

Q is for Questions.  You will have lots of them when staying in a NICU...so ask them!

R is for Respiratory Therapist.  Most premature infants will have some form of respiratory distress.  My babies did very shortly after birth and were required to be "bagged" and then intubated.  Bagged is a layman's term to describe a means to slowly, rhytmically provide oxygen into the baby's lungs using what looks like a small balloon, manually squeezing air into the airway.  Intubation is usually the last approach to assist the baby with breathing.  A tube is inserted through the nose or mouth and down the back of the throat into the airway.  The tube will most likely be there for a little while, until the baby proves he or she can breathe on his/her own or until another method can be tried, such as CPAP.  The Respiratory Therapist (RT) will monitor the babies breathing, their patterns, monitor settings and adjust for the baby's needs.  Many premature babies will suffer from some level of Respiratory Distress Syndrome. The ultimate goal is to gradually get the baby ready to breathe "room air," which means to be off any sort of "respiratory support,"  and breathe all on their own.

S is for Sepsis Neonatorum, which is an infection of the newborn "that spreads throughout the baby’s body. Sepsis occurs in less than 1 percent of newborns (1 out of every 100), but accounts for up to 30 percent of deaths in the first few weeks of life. Infection is 5-10 times more common in premature newborns and in babies weighing less than 5½ pounds than in normal-weight, full-term newborns. Complications experienced during birth, such as premature or prolonged rupture of the membranes or infection in the mother, put the newborn at increased risk of infection...The onset of what is called early-onset neonatal sepsis is within six hours of birth in over half the cases and within 72 hours in the great majority of cases.  Sepsis that begins four or more days after birth is called late-onest sepsis, and is probably an infection acquired in the hospital nursery (a nosocomial infection). In both types of neonatal sepsis, the infection may be only in the bloodstream, or may spread to the lungs (pneumonia), brain (meningitis), bone (osteomyelitis), joints, or other organs in the body." Children's Specialists of San Diego.
Antibiotics are often started even before a formal lab report is returned, because sometimes there is no choice or it is not wise to wait.  Should the child be shown to be clear of sepsis, then the antibiotics regimine would be stopped, with no harm done.

T is for Transfusion.  A premature infant is very susceptible to developing low hemoglobin counts, which can lead to the need for blood transfusions.  Sometimes many.  Red blood cells carry hemoglobin, which contains iron and carries oxygen, and if their counts are too low babies will become anemic.  The doctors and staff will monitor a baby's levels.  Sometimes it will seem as though it has taken only a few hours for your child's appearance to degrade severely.  A baby may appear ashen or extremely pale in colour.  It can be a scary thing to see.  This happened to us on several occasions with both of the twins.  It got to the point sometimes that we would start telling the nurses, "it looks like his hemoglobin has dropped again."  Sometimes it was so apparent, but we were told that sometimes the body corrects this problem on its own.  The doctors didn't immediately order blood transfusions at first glance.  They usually gave the body time to sort itself out.

U is for Ultrasound.  As we all know a pregnancy means you will most likely have at least one ultrasound before the arrival of your baby.  If you're carrying multiples you will have a minimum of one ultrasound, but most likely, you'll have several.  Since I was already high risk for having a second premature baby, I had my first ultrasound at 12 weeks for screening and to assess the exact number of weeks of gestation.  Once we found out I was having twins at that ultrasound appointment, I was scheduled for one ultrasound every month until the babies were born.  All three babies had many ultrasounds while in hospital.  Of the brain, of the heart, of the kidneys...whatever they wanted to make sure was doing okay, they did an ultrasound on it. 

V is for VICTORY.  I can't imagine feeling more victorious, than when a parent/family walks out of a NICU after a long stay.  Our babies may have some battle wounds, but they made it.  They are strong and they are fighters.

W is for WBC (White Blood Cells).  White blood cells help the body fight against infection.  Often premature infants WBC count can become dangerously low, leaving the body unable to fight effectively against potential infection.

X is for XRAY.  A premature baby will most likely have many XRAYS during their NICU stay.

Y is for Yup, I'm running out of words to work with here...

Z is for Zzzzzzz...