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...
Additionally, today marks another milestone. After about 18 months the Ronald McDonald House Hamilton, where we stayed for over 3 months, had their Grand Opening following a very large addition to the existing House. Today we got to visit the House and take a walk down memory lane and see all the amazing changes they made. I was inspiring to see how so many people could come together, create a new design, blend the old with the new and be so creative while doing it! They talked to parents of families from the past, talked to experts and those that could give some insight on what things would make the house operate most efficiently for all types of needs.
A library-reading room, which was gorgeous! Our oldest son didn't want to leave the room today.
