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.
22 Sept 2011
21 Sept 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...
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 Sept 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...
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...
31 Aug 2011
Hi-ho! Hi-ho! It's Off to Work I Go!
Today, after 16 months, I re-joined the morning rush hour to head into work.
I had planned and re-planned my first day back to work in my head and how I would strategically pull off having a shower, drying my hair, and straigthtening my hair all before the twins woke up. (Big brother was at his grandmother's house for the night to help us out a bit.) In my mind I would get these three tasks done and then get the babies up, put them in their high chairs with their morning bottle, get their daytime bottles mixed up for the babysitter, feed the babies, then get dressed afterward to ensure I didn't get any baby splatter on my good work clothes.
Last night I triple-checked that my TV alarm would click on at the right time. Checked that the time on the TV was actually set for AM and not PM and so on. I didn't want to screw up my first morning back to work!
My sleep was restless and even though I didn't feel stressed out or worried about my first day back, I think just the idea of sleeping in and ruining "The Plan," was keeping me from sleeping well. When I say, "sleeping in," all I really mean is sleeping to our usual 7:15 or 7:30, which would have had me at least 45 minutes behind schedule. Not good!
Twin A had other ideas anyway and he let it be known at 5:55 AM that he was ready to get up. This was so unusual for him to do and I really do think that he could tell something was up. These babies usually sleep at least 11 hours! There he was in bed, jibber jabbering away, waiting for someone to come get him.
"The Plan" was already destroyed! I hadn't even gotten out of bed yet! :) Instead, both babies had their bottles in bed, which their Daddy made, while I had a shower. Amazingly, we were able to pull off the rest of "The Plan," getting them fed in their high chairs and getting dressed and out the door at 7:43...2 minutes ahead of schedule. *Big Smiles*
We got the babies over to their babysitter's house at 8:00 on the dot. My hubby joined me to officially meet the babysitter and know where to go in the event of a "please come pick up your kid" request, if I couldn't deal with a potential problem with one of the kids!
Off my husband and I went in different directions after dropping off the twins and I made it to my office with ten minutes to spare before the official start of my day.
My first day back went very well. I felt right at home again, as though I hadn't actually been gone all this time. Since the twins arrived so early, 16 months ago, I really hadn't had the opportunity to do the usual slow wind down and wrap up of my job all those months ago. One day I was there, the next I wasn't. I think this is why I felt like I hadn't actually been gone that long. My memories of the final few days at work before my sudden departure were very fresh in my mind. I can remember several of the clients I was working with, conversations I had been having with them and so on. It's kind of like my work-life was at a stand-still in my mind...but in reality, my how things have changed!
I have a lot of new things to learn and I will definitely be kept on my toes over the next few weeks, learning the many changes that have occurred over the last year and a bit. I think I will be hitting the sack as soon as I can when I come home in the evenings because all this new information is going to be draining. I am, however, looking forward to taking on this renewed challenge! Today sped by very quickly, which I was amazed by. I was reading, refreshing my memory, and learning new things so quickly, so I didn't have time to stop and look at the clock all that much.
I did pull a few serious mommy-brained moves today and one for sure left at least one co-worker scratching her head. Hehehe. First off, I forgot my wallet and had no lunch prepared and no lunch money, so I had to drive back home to get my wallet. Once home I ate leftovers from the fridge, so that worked out okay. I drove back to work and parked in a temporary parking spot, so I could carry in one of my work boxes I had brought home during my mat leave. I left my driver's side door open, while I went to the back and got my box out of the trunk. I then set the box down on the curb next to me and opened the front passenger door, grabbed my nice steamy Tim Hortons coffee, shut the door, armed the car with my remote key and walked away.
About 20 minutes later I received my first phone call on my office extension and it was my co-worker friend, asking if everything was alright. Of course it is, I said...why?? She tells me she was worried about me because she just passed my car and saw the driver's door wide open, but I wasn't anywhere to be seen!! What??!! Did you shut it, I asked? No! What?!?! OH MY GOD!! I had to run for it as fast as possible, which is next to impossible in the style of thong sandal shoes I was wearing! How ridiculous! Why would my van remote lock thingy "honk" when I thought I was locking up all the doors, while one door hung wide open? That makes no sense to me. Like I said before, I am not really a fan of my van...so this just adds to my lists of why not to like this van! Yes, it was really dumb of me to leave the door wide open, but why did the locks engage and the van "honk" if it wasn't really secured? No sense...
The van was fine, my change still remained in the change slots, my parking pass was not stolen, and most importantly, my 3 kids' carseats were still in there, nice and secure. All I could envision as I ran to my van was having to replace $700+ in carseats!
I do have to wonder why the person who parked next to my van didn't bother to shut it. I also wonder if they reported to anyone at City Hall, where I was parked, that their was a suspicious van in the parking lot. I wonder. I imagine that everyone minded their own business and went about life like nothing was out of the ordinary. I think that's pretty sad.
My co-worker said she didn't shut the door because she didn't want to put fingerprints on the door, in case there really was something wrong! I hear that. I get that. She did call me and found I was okay. That's cool.
Anyway, those were my two mommy-brain episodes today on my first day back to work. The bottom line is I did make it to work on time, my twin babies were content at their babysitter's, eldest son had an awesome time at a pool with his grandmother and my hubby and I were able to work so well together this morning and this evening to make our new reality work! I also got a parting gift this evening from the babysitter, which was fresh mini meringues with custard and fruit on top. I think I should move into this woman's house...I'd eat really well!
I had planned and re-planned my first day back to work in my head and how I would strategically pull off having a shower, drying my hair, and straigthtening my hair all before the twins woke up. (Big brother was at his grandmother's house for the night to help us out a bit.) In my mind I would get these three tasks done and then get the babies up, put them in their high chairs with their morning bottle, get their daytime bottles mixed up for the babysitter, feed the babies, then get dressed afterward to ensure I didn't get any baby splatter on my good work clothes.
Last night I triple-checked that my TV alarm would click on at the right time. Checked that the time on the TV was actually set for AM and not PM and so on. I didn't want to screw up my first morning back to work!
My sleep was restless and even though I didn't feel stressed out or worried about my first day back, I think just the idea of sleeping in and ruining "The Plan," was keeping me from sleeping well. When I say, "sleeping in," all I really mean is sleeping to our usual 7:15 or 7:30, which would have had me at least 45 minutes behind schedule. Not good!
Twin A had other ideas anyway and he let it be known at 5:55 AM that he was ready to get up. This was so unusual for him to do and I really do think that he could tell something was up. These babies usually sleep at least 11 hours! There he was in bed, jibber jabbering away, waiting for someone to come get him.
"The Plan" was already destroyed! I hadn't even gotten out of bed yet! :) Instead, both babies had their bottles in bed, which their Daddy made, while I had a shower. Amazingly, we were able to pull off the rest of "The Plan," getting them fed in their high chairs and getting dressed and out the door at 7:43...2 minutes ahead of schedule. *Big Smiles*
We got the babies over to their babysitter's house at 8:00 on the dot. My hubby joined me to officially meet the babysitter and know where to go in the event of a "please come pick up your kid" request, if I couldn't deal with a potential problem with one of the kids!
Off my husband and I went in different directions after dropping off the twins and I made it to my office with ten minutes to spare before the official start of my day.
My first day back went very well. I felt right at home again, as though I hadn't actually been gone all this time. Since the twins arrived so early, 16 months ago, I really hadn't had the opportunity to do the usual slow wind down and wrap up of my job all those months ago. One day I was there, the next I wasn't. I think this is why I felt like I hadn't actually been gone that long. My memories of the final few days at work before my sudden departure were very fresh in my mind. I can remember several of the clients I was working with, conversations I had been having with them and so on. It's kind of like my work-life was at a stand-still in my mind...but in reality, my how things have changed!
I have a lot of new things to learn and I will definitely be kept on my toes over the next few weeks, learning the many changes that have occurred over the last year and a bit. I think I will be hitting the sack as soon as I can when I come home in the evenings because all this new information is going to be draining. I am, however, looking forward to taking on this renewed challenge! Today sped by very quickly, which I was amazed by. I was reading, refreshing my memory, and learning new things so quickly, so I didn't have time to stop and look at the clock all that much.
I did pull a few serious mommy-brained moves today and one for sure left at least one co-worker scratching her head. Hehehe. First off, I forgot my wallet and had no lunch prepared and no lunch money, so I had to drive back home to get my wallet. Once home I ate leftovers from the fridge, so that worked out okay. I drove back to work and parked in a temporary parking spot, so I could carry in one of my work boxes I had brought home during my mat leave. I left my driver's side door open, while I went to the back and got my box out of the trunk. I then set the box down on the curb next to me and opened the front passenger door, grabbed my nice steamy Tim Hortons coffee, shut the door, armed the car with my remote key and walked away.
About 20 minutes later I received my first phone call on my office extension and it was my co-worker friend, asking if everything was alright. Of course it is, I said...why?? She tells me she was worried about me because she just passed my car and saw the driver's door wide open, but I wasn't anywhere to be seen!! What??!! Did you shut it, I asked? No! What?!?! OH MY GOD!! I had to run for it as fast as possible, which is next to impossible in the style of thong sandal shoes I was wearing! How ridiculous! Why would my van remote lock thingy "honk" when I thought I was locking up all the doors, while one door hung wide open? That makes no sense to me. Like I said before, I am not really a fan of my van...so this just adds to my lists of why not to like this van! Yes, it was really dumb of me to leave the door wide open, but why did the locks engage and the van "honk" if it wasn't really secured? No sense...
The van was fine, my change still remained in the change slots, my parking pass was not stolen, and most importantly, my 3 kids' carseats were still in there, nice and secure. All I could envision as I ran to my van was having to replace $700+ in carseats!
I do have to wonder why the person who parked next to my van didn't bother to shut it. I also wonder if they reported to anyone at City Hall, where I was parked, that their was a suspicious van in the parking lot. I wonder. I imagine that everyone minded their own business and went about life like nothing was out of the ordinary. I think that's pretty sad.
My co-worker said she didn't shut the door because she didn't want to put fingerprints on the door, in case there really was something wrong! I hear that. I get that. She did call me and found I was okay. That's cool.
Anyway, those were my two mommy-brain episodes today on my first day back to work. The bottom line is I did make it to work on time, my twin babies were content at their babysitter's, eldest son had an awesome time at a pool with his grandmother and my hubby and I were able to work so well together this morning and this evening to make our new reality work! I also got a parting gift this evening from the babysitter, which was fresh mini meringues with custard and fruit on top. I think I should move into this woman's house...I'd eat really well!
25 Aug 2011
One Year Anniversary
This past weekend we celebrated our 3rd and final 1st Homecoming (Discharge) Anniversary! This final celebration seems to stand out the most. One year ago after several months of waiting, wishing and hoping, we brought home Twin B to make our family whole and living under one roof.
It's hard to believe one year has passed since the twins came home! I feel like I can recall just about every single day of our NICU stay in 2010. The time in the NICU felt like we were on slow motion or our life had been left on pause and then eventually shifted into standby!
Then winter came...On a normal, uninterrupted morning I would get myself ready (not including a shower or food for myself) and three kids ready and out the door in about an hour and forty-five minutes. That's nuts! Breakfast was on the road or at Nana's for our 2 year old. I missed the days of showering, getting myself ready, getting my 2 year old ready and out in much quicker fashion.
Sadly, there were no Mom and Baby events for this Mama or these babies.
Although the first year was extremely busy and tested my abilities and determination as a mother, I am proud of how hard my family and I worked to achieve this very special milestone. I am thankful and glad I was able to have the opportunity to take them on or have them at the house for almost 300 appointments. There was a time just a little over a year ago I was not sure I'd get the chance at all. :)
Throughout their first year there have been many memories, but aside from our final Homecoming, there were two especially memorable experiences this first year as a family of five. First, there was Christmas, which I've always loved to celebrate. December 2010 was probably my happiest Christmas ever and it was so exciting to have well babies to celebrate a First Christmas with. In actuality, they did have their first bout of the flu, so they were a little groggy, but we started our Christmas Eve family dinner tradition anyway. They were the best gift that Christmas!
Our second memorable experience this past year was definitely our first family trip. Off to a cottage for a week. No air, no shower in the cottage, but 3 little boys, a lake and a boat is all that we needed to have an awesome time!
It's hard to believe one year has passed since the twins came home! I feel like I can recall just about every single day of our NICU stay in 2010. The time in the NICU felt like we were on slow motion or our life had been left on pause and then eventually shifted into standby!
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| First hour home together August 20, 2010 They've officially invaded each other's space! |
During the year after discharge our life has been anything but slow. I have managed to get my kids to 298 appointments in the year since they were discharged. Yes, that's what I said...298. That seems insane, doesn't it? As I've said before, just because you've left the NICU does not mean you will no longer have a connection to the medical world. In the first few months I was seriously running on auto-pilot. Sleep, wake, nurse, bottle, shower (maybe), drive, sit in waiting rooms, fill in paperwork, paperwork, paperwork and on and on and on! Usually my first meal of the day consisted of a bagel or a sandwich by around 2:30 or 3:00, when most of my appointments were winding down for the day and I was heading back out on the road. This is why I can now say, without a doubt, pack a snack and some bottled water. I started to get the hang of doing this after a couple of months. The first few months I was still trying to figure out how to get two babies and my 2 year old toddler out the door, get the 2 year old to Nana's or a babysitter's and to our appointments on time.
Sadly, there were no Mom and Baby events for this Mama or these babies.
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| Getting caught up on some snuggling with each other |
The times that these events run are when I'd be sitting in a waiting room or helping with physiotherapy or other activities for the twins. I enjoyed seeing my babies grow and learn over the months, but I did miss interaction with other "normal" parents in normal settings.
Although the first year was extremely busy and tested my abilities and determination as a mother, I am proud of how hard my family and I worked to achieve this very special milestone. I am thankful and glad I was able to have the opportunity to take them on or have them at the house for almost 300 appointments. There was a time just a little over a year ago I was not sure I'd get the chance at all. :)
Throughout their first year there have been many memories, but aside from our final Homecoming, there were two especially memorable experiences this first year as a family of five. First, there was Christmas, which I've always loved to celebrate. December 2010 was probably my happiest Christmas ever and it was so exciting to have well babies to celebrate a First Christmas with. In actuality, they did have their first bout of the flu, so they were a little groggy, but we started our Christmas Eve family dinner tradition anyway. They were the best gift that Christmas!
Our second memorable experience this past year was definitely our first family trip. Off to a cottage for a week. No air, no shower in the cottage, but 3 little boys, a lake and a boat is all that we needed to have an awesome time!
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| Hanging at the park, August 2011 |
This past year I have taken well over 5000 pics of my 3 cuties, watching them all grow. My photography gene has really kicked in since having kids. My camera keeps a running count of all the pictures I take on it, which I think is hilarious. It really puts into perspective what a camera addict I am! I can understand why my 3 year old no longer wants me to take pictures and I have to ask his consent to get him to smile for the camera these days! LOL. :)
The end of one year is bittersweet. My babies have grown stronger, are learning and starting to achieve many milestones at a quicker pace, but I will also be returning to my full time job in one week. I'm looking forward to seeing how our second year together unfolds, with my husband and I running 3 kids to their respective daycares, getting to work and hopefully not pulling all our hair out in the process. :)
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| Future Bill Gates or Mark Zuckerberg? |
11 Aug 2011
Fire It Up!
Yeah...I just made a Busta Rhymes reference...and on to today's thoughts...
I've been blogging a few months now and it has become something I really look forward to. It has become something fun and meaningful in my hectic life. I'd rather sit for a couple of hours at night reading others' blogs, interacting with others, and working out my own thoughts, than sit infront of the tube staring aimlessly at some T.V. show that will most likely put me to sleep.
Recently, while I was away on vacation, I received a "Fire Award" from a fellow blogger who likes to stop in and read about what I've got to say. It's a pretty awesome feeling to know that other people are out there, sharing in my blogging experience. To click on my comments section and see what people have to say is very rewarding.
I used to write in a journal for I'd say over 10 years. The difference between that and this is all the interaction, laughs and exchanging of anecdotes through blogging. The journal was a place for my quiet, personal thoughts and reflections...kinda boring in hindsight!
The Fire Award was awarded to me by Holly at www.twinsplusone.com. The rules of the award state that the recipient must list seven things about themselves and then pass the award to 10 other deserving bloggers!
2. I am a college and university grad, who is considering going back to school AGAIN. My husband thinks I'm nuts, but this is the way of the world these days!
4. My favourite music is reggae. People would not normally guess this if they don't know the true me. LOL.
Now on to 10 other Bloggers who are "On Fire..."
I've been blogging a few months now and it has become something I really look forward to. It has become something fun and meaningful in my hectic life. I'd rather sit for a couple of hours at night reading others' blogs, interacting with others, and working out my own thoughts, than sit infront of the tube staring aimlessly at some T.V. show that will most likely put me to sleep.
Recently, while I was away on vacation, I received a "Fire Award" from a fellow blogger who likes to stop in and read about what I've got to say. It's a pretty awesome feeling to know that other people are out there, sharing in my blogging experience. To click on my comments section and see what people have to say is very rewarding.
I used to write in a journal for I'd say over 10 years. The difference between that and this is all the interaction, laughs and exchanging of anecdotes through blogging. The journal was a place for my quiet, personal thoughts and reflections...kinda boring in hindsight!
The Fire Award was awarded to me by Holly at www.twinsplusone.com. The rules of the award state that the recipient must list seven things about themselves and then pass the award to 10 other deserving bloggers!
I don't usually talk about "myself" outside that of being a mother to my preemie babies. Having three premature babies has engulfed my life and has been my main focus, especially on my blog. So here are 7 things my readers probably don't know about me:
1. I usually make up to 4 cups of tea or coffee during my days at home with all three boys. I don't usually finish a single cup and if I do get around to finishing one cup, it's usually more like an "iced coffee" or "iced tea." EW!
3. My return to work is in T minus 20 days and I am excited, but also a little depressed about this. :( I will enjoy getting back out into public with people that don't know me as "the twins' mom," but know me on a professional basis. I will, of course, miss my daily interactions with my babies and oldest son, while they are at daycare and I am busy at work.
4. My favourite music is reggae. People would not normally guess this if they don't know the true me. LOL.
5. My favourite colour is pink in a house filled with blue.
6. I am an Employment counsellor and I love helping people find work, develop a new career path and basically figure out who they are. Most people look at work as a means to an end (moolah,) but many are now trying to figure out who they are, what makes them tick, and then what jobs would be best suited to them. I love helping people with this!
7. If you're familiar with Personality Dimensions or True Colours, you will understand there are four colours: Green, Gold, Orange and Blue. These are "personality" types. I am a Green. I ask a lot of questions, I research, I retain information. "Knowledge is power." I can also be very opinionated because of my Green-ality. :) My "second" colour is Gold. Gold individuals are goal-oriented, dependable and take on leadership roles, among others. You can find out some basics of these colours by clicking here: http://www.theslideprojector.com/pdffiles/learnertypes.pdf or http://users.trytel.com/~jfalt/Temp/pd-full.html
8 Aug 2011
We Survived Our First Family Vacay!
As a family of 3, it was nothing to pack up a few things and take off in our car or crossover. As a family of 5, it takes days of prep work, list writing, losing lists, re-writing lists, shopping for mega boxes of diapers, baby food, formula, packing enough baby bottles, clothing for 5 and on and on! We drive a Grand Caravan, much to my chagrin (bye-bye crossover), and it was packed to the max. We even had to buy 2 roof rack travel bags, which were also stuffed.
We took a long awaited and much needed family getaway up "North" in our province of Ontario. Sitting on a beach or on the dock was something we longed for and my husband and I realized the last time we actually took more than a week to ourselves was our own honeymoon 4 years ago! How sad is that?? In these 4 years, we've spent so much time in hospitals, at home or in doctor's offices and specialist's offices, that time has been one big blur and vacationless.
I drove the 500+ kilometres there and back. The whole way I was worried about losing one of the roof top bags, but things were strapped down very well! Aside from that worry, my only other worry was how our 3 kids were going to cope with over 5 hours of driving. We learned that our 3 boys have no problem with long drives, no motion sickness and they were so calm and patient. Our oldest son, the only one that talks as of yet, finally asked "Are we there yet," when we were about 1 hour away from our serene destination. That, I think, is amazing!
We filled our drives with some "I Spy," looking around for moving or still objects along the highways. I had bought our oldest son some of those colourless markers, which only make colour on special paper. Who ever came up with this idea was a GENIUS. I didn't have to worry about ink leaking all over our son's carseat or the van's upholstery when he dropped a marker or two, which he was bound to do...and did. Colouring entertained him a bit. For the most part, however, he was interested in what we were passing by as we drove, what the name of the highway or road was that we were on, he talked about things he saw and was an awesome kid the whole way.
The back area of the van was packed with as much stuff as possible, while keeping it as safe as possible. The stow and go carseats in the back of the van are a Godsend (most people that know me will be shocked to hear me praising this vehicle)! If we didn't have that extra space to pack, we would have had to have a trailer attached to our beast of a van. Our oldest son thought it was hilarious when he was in the back row looking at all the "stuff" surrounding him.
We were able to take our twins to the beach for the first time, which was so wonderful. At 15 months, the twins have just finally figured out how to sit without support, so they'd sit there for hours sometimes, watching what was happening in the water or on the beach, and flirting with all the ladies that walked up to them and started cooing at them. They had their fair share of sand splattered in their faces by an over-excited older brother. One of the twins did a face plant into the shallow water he was sitting in and that was the end of that! Other than that, our vacay went off without a hitch.
The babies sleep amazingly well anywhere we go and they did the same on this vacation. Even without the comforts of their own cribs and darkened bedroom, they were able to adapt to the playpens we asked them to sleep in and the not so dark bedroom that was theirs for a week.
We took a long awaited and much needed family getaway up "North" in our province of Ontario. Sitting on a beach or on the dock was something we longed for and my husband and I realized the last time we actually took more than a week to ourselves was our own honeymoon 4 years ago! How sad is that?? In these 4 years, we've spent so much time in hospitals, at home or in doctor's offices and specialist's offices, that time has been one big blur and vacationless.
I drove the 500+ kilometres there and back. The whole way I was worried about losing one of the roof top bags, but things were strapped down very well! Aside from that worry, my only other worry was how our 3 kids were going to cope with over 5 hours of driving. We learned that our 3 boys have no problem with long drives, no motion sickness and they were so calm and patient. Our oldest son, the only one that talks as of yet, finally asked "Are we there yet," when we were about 1 hour away from our serene destination. That, I think, is amazing!
We filled our drives with some "I Spy," looking around for moving or still objects along the highways. I had bought our oldest son some of those colourless markers, which only make colour on special paper. Who ever came up with this idea was a GENIUS. I didn't have to worry about ink leaking all over our son's carseat or the van's upholstery when he dropped a marker or two, which he was bound to do...and did. Colouring entertained him a bit. For the most part, however, he was interested in what we were passing by as we drove, what the name of the highway or road was that we were on, he talked about things he saw and was an awesome kid the whole way.
The back area of the van was packed with as much stuff as possible, while keeping it as safe as possible. The stow and go carseats in the back of the van are a Godsend (most people that know me will be shocked to hear me praising this vehicle)! If we didn't have that extra space to pack, we would have had to have a trailer attached to our beast of a van. Our oldest son thought it was hilarious when he was in the back row looking at all the "stuff" surrounding him.
We were able to take our twins to the beach for the first time, which was so wonderful. At 15 months, the twins have just finally figured out how to sit without support, so they'd sit there for hours sometimes, watching what was happening in the water or on the beach, and flirting with all the ladies that walked up to them and started cooing at them. They had their fair share of sand splattered in their faces by an over-excited older brother. One of the twins did a face plant into the shallow water he was sitting in and that was the end of that! Other than that, our vacay went off without a hitch.
The babies sleep amazingly well anywhere we go and they did the same on this vacation. Even without the comforts of their own cribs and darkened bedroom, they were able to adapt to the playpens we asked them to sleep in and the not so dark bedroom that was theirs for a week.
Our oldest son got to have his first boat ride and became a fisherman. 3 generations of fishermen enjoyed many hours on the lake together. This is the start of a wonderful, new family tradition. Next year there will be two new little fishermen ready with their own fishing poles.
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