Proud Mom of a NICU Grad 2010 X 2

Today, July 31^st is our 3^rd NICU Graduation Anniversary day for Twin A! Three years ago we celebrated the discharge of Twin A from hospital, which was a day we waited a long time for. I’m not going to lie, not all of those days were filled with patience and understanding. Some of those days when we were waiting to get to take our babies home were filled with tea
rs, frustration and what sometimes felt like my heart was breaking.

  

Cat nap in the "care by parent" room.
Final stage of NICU!

That day was one of the most positive days in three months. As any NICU parent knows, we experience many positive experiences or steps in the right direction during a NICU stay, but that final step of being able to walk your baby out of the NICU, which has protected him since the day he arrived is an amazing feeling! No longer is your baby sheltered inside a dimly lit intensive care unit, with alarms, wires and a staff. Now he is all yours and ready to go home! When we walk out those NICU doors and they close behind us, we get this sudden urge to run for the elevator doors and get out of there as fast as possible before someone changes their mind! Imagine that? Funny, but not! 

Big Bro greets Twin A at NICU exit.

All parents who walk out of a hospital with their new little baby walk out with pride plastered all over their faces. A NICU parent does that too, but may have more people to stop and chat with and will be more than happy to take in all the glory of the ooh’s and ah’s and loving coo’s coming from staff and random strangers’ mouths, as they make their way toward the exit to take their small baby home. It’s like a mini, slow-moving parade. On our special day, as I wheeled out Twin B, who had just officially met his big brother after 93 long days apart, the sun was shining and my children’s grandmothers were in tow and they were smiling from ear to ear. It was one of the best days I had ever experienced, but things weren’t quite right yet.

While we focused our attention on getting Twin A situated in his second “home away from home” at the Ronald McDonald House down the street from the hospital, the reality was Twin B was still in the NICU, as he was still working on being well enough to come home. My little family was not yet picture perfect yet.

Getting used to life "on the outside."

Big Bro gets in his first snuggles
with Twin A.

Now my time was not only going to be divided between the hospital and my eldest child, it had to be divided between the hospital with Twin B, Twin A at our “temporary residence” and Big Brother who was bouncing between our actual home and the “home away from home.” Thankfully, I had two awesome ladies front and centre to help balance the needs of Twin A and Big Brother, taking up temporary residence off and on for three more weeks while we waited for Twin B to join his two NICU Grad brothers with his rite of passage in graduating from his NICU stay.

Another cat nap. This time at his
Home Away from Home.

The boys’ father was at work, making a living and bringing home the bacon, while I worked hard with my little boys outside the hospital and my little man working on healing and re-teaching him to breastfeed. He had had a surgery and was very pooped out, losing his will to breastfeed. Those final three weeks seemed like an eternity, but I knew we were in the home stretch. With a lot of collaboration between our NICU team, including the neonatologists, occupational therapist, lactation consultant, our nurses and myself, we devised plans, scaled back, re-thought and tried again to get this little man healthy, packing on the grams (yes, grams) and ready to graduate. Those days were taxing. They were frustrating. I advocated like I never advocated for my child before! And it was so worth it. By this stage of the game I had developed a new found confidence in
my knowledge as a mother and I had learned how to speak for
my baby and for the wellness of my family.

Three weeks after Twin A came home, along came Twin B, right behind is little big brother. That day was the end of our NICU chapter and the start of many amazing new ones in our own home as a family of five.

Cuddle Time: Kangaroo Care and Your Preemie

Today is International Kangaroo Care Awareness Day. Honestly it seems to be each week there is something to bring to the forefront of peoples’ minds when it comes to the world of prematurity and to be quite honest, I think that’s perfectly okay!

Last week I got the amazing opportunity to speak on a local radio station during a radiothon for a local child development centre and I discussed how the parents of preterm infants really end up thinking about all the smallest, finest details of how to parent and care for their small, fragile babies. From the moment they are born we are on alert and want to protect and do anything we can to keep our babies from harm, as well as do anything we can to help them grow and progress in order to go home.

This is where Kangaroo Care comes in. Kangaroo Care is not a new concept, but it has been growing in practice in North American neonatal intensive care units. As the years go by there is more research indicating the close skin-to-skin touch between a mother and baby or father and baby really does wonders for the well-being of the preterm or NICU baby, as well as for the mental health of the parents. When babies are held in kangaroo fashion, which is usually just in a diaper and held snuggly against the parent’s bare chest the babies are found to have more regular breathing (less apnea) and heart beat (less bradycardias) patterns and therefore less desats(low blood oxygen) episodes. It seems that this close contact with the parent stimulates the baby’s body and neurological system, making it seem as though the baby is protected as it would have been had the baby still been in utero.  This is one mom with three preemies’ thought anyway.

I recall the first time I got to “officially” hold my baby as though it was yesterday. It was actually 5 years ago, but I remember the setting, the sounds, the whole surreal feeling I was having in this place we were suddenly calling home; The NICU. In that dimly lit, private room I was finally able to hold my baby and get to know him, while reclining in a chair and holding my baby snug as a kangaroo (a bug?), close to my skin and tucked in for a nap for the first time. He was 5 days old, but finally Mommy and Baby were together as we were meant to be. I ended up snuggling with him for close to an hour that first time. My husband was giddy with excitement to finally get to hold him like this when the next turn came around.

The Kangaroo Care experience was peaceful. When we were sitting like that in the early days, getting to know our baby, that is when we were able to accomplish much of our much needed bonding that had to be put on hold for a few days anyway.

Two years later we were well-versed on the value of Kangaroo Care and you didn’t have to tell me twice that it was time to begin Kangaroo Care with the twins when they were finally healthy enough. I mentioned how great Kangaroo Care is for the mental health, but it is also helps parents release the tension they may be holding in their bodies. I remember walking around feeling tense; this tension in my chest (real or imagined, whatever) and as soon as I was holding each baby closely I could truly feel that tension release.

So if you find yourself in a NICU and questioning the point of doing Kangaroo Care or if you feel shy or embarrassed for whatever reason, I suggest giving it a go anyway. Talk to your baby’s nurse about wanting to do Kangaroo Care and to discuss when the time is right. Then when it's time, pull that curtain closed, have your own comfortable button up shirt (that you’ll wear backward) ready and waiting, which you’ll use to wrap the baby in, rather than a hospital gown. It’s worth a shot and you might be surprised how relieved you feel and you’ll see your baby respond practically immediately.

A couple of special notes to be aware of: Sometimes babies will need additional time to mature and be well enough to take out of the incubator to do Kangaroo Care. Be patient and don’t give up during that waiting process. The opportunity to bond with your baby in this way is not one that should be dismissed. To put it in perspective: I didn't get to hold Preemie 1 until 5 days old, Preemie 2 until 14 days old (hey, today is that anniversary--3 years ago!) and Preemie 3 really had me in a holding pattern, because I didn't get to hold him until he was 24 days old! The waiting periods were worth it! The first time I held each of my babies it was for formal Kangaroo Care.

Nowadays you can buy a snug wrap, which was purposely designed for Kangaroo Care. I didn't have that option at the time and I used a backward hospital gown or my own button up shirts worn backward and they did the trick. Once your baby is tucked in, you can also ask a nurse to tuck a blanket over you and your baby for additional warmth if needed. To avoid "boredom" while doing Kangaroo Care, bring a book to read.

Most Popular

People often ask me what are some of the most popular topics people check out on this blog. So here are the two most popular. The picture of my twins' diapers, size by size, gets me every time!

Diaper Backward Spells Repaid

"Discharge" -- A spectacular word!

I'll follow up with more popular posts in the coming weeks.

Preemie Power Tower! World Prematurity Day 2012

So I heard a few days ago that the CN Tower in Toronto would be lighting up purple in honour of World Prematurity Day and I got all excited at the prospect of seeing it myself.  How could I justify a trip down the highway-about a 45-50 minute drive away on a good day-to see a Tower I'd seen thousands of times before.

Think, think, think.

My mother pointed out this week, that once I set my mind to something, I usually make it happen.  So I thought and thought...and began looking into a reason I could take the trip.  Luckily, a pretty special event was happening downtown, which I've never actually seen.  The Cavalcade of Lights.  The Christmas tree and city hall area being lit up with lights for the coming holiday season. Perfect!  A night of nothing but looking at pretty lights.

Date night for Proud Preemie Mom and Dad!  That never happens!

Off we went down the 401 to see a tower I grew up 20 minutes away from. A tower I've seen thousands of times. Yet I've never seen this thing purple! The fun part of tonight was my husband had absolutely no idea what I was up to (because he would have thought I was a little looney,) so heading down the highway he's guessing and guessing.  Finally it occurred to him I'd slapped a purple ribbon on his jacket just before we headed out, I was wearing one, as well as a purple shirt and scarf. By George, I think he's got it.

So we wound up having a nice date night out on the town. Took pictures at the CN Tower like only tourists do. Had an awesome dinner. Then saw the lights festival.  A special evening wrapped up a special day.

Earlier in the day I did my share of tweeting and Facebook posting to spread the word about World Prematurity Day. I stuck a camera in my 3 preemies' faces more than they approved of and earlier today I still wasn't 100% sure I was going to get to Toronto, so I asked anyone that may be in the area to take a picture for me. Thankfully I got some of my own and here are a few.

HAPPY WORLD PREMATURITY DAY 2012

Preemie # 1 Goes to Kindergarten!

The time has come for our oldest preemie to start school.  A usual milestone for many, but not always an "easy" one for children who were born premature.  Thankfully, we have watched our firstborn preemie achieve and master each milestone right on time and sometimes ahead of the game.  It is a relief to feel that all things are "okay." 

There will be things to watch out for and pay attention to as he starts formal schooling and hopefully all will go well.  One of the many, many standard questions asked in the paperwork we had to fill in for our son's school was in the health section..."Birth complications?"  Why, yes. Yes, there were.  "Birth complications" lands on the #1 slot in the long "yes or no" list. And there is a reason...

I don't plan to dwell on the "what if's," but I do plan on being well-informed and helping others keep informed.  Children who are born premature often go through traumatic experiences right out the gate.  Their brains are still forming when they arrive early, which leaves the baby without defence mechanisms or an understanding of what they are experiencing and feeling.  Many premature babies can go through 60 procedures or more in the very early days following their arrival.  That is a lot for an adult to take, let alone an undeveloped little baby.  The following excerpt from an article entitled, Recognizing the Potential Effect of Stress and Trauma on Premature Infants in the NICU: How Outcomes are Affected?, discusses the potential long term impact on premature infants. This article was published in the Journal of Perinatology, Dec, 2003, 23:679-683. (The full article can be found here.)
            "When discussing an infant’s or child’s response to trauma, Perry et al(10) explains, “in the developing brain, these states [temporary responses] organize neural systems, resulting in traits.  Because the brain changes in a use-dependent fashion and organized during development in response to experience, the specific pattern of neuronal activation associated with the acute responses to trauma are those which are likely to be internalized.  The human brain exists in its mature form only as a byproduct of genetic potential and environmental history”.  Streech-Fischer and van der Kolk(13) believe that “chronic childhood trauma interferes with the capacity to integrate sensory, emotional and cognitive information into a cohesive whole and sets the stage for unfocused and irrelevant responses to subsequent stress.”
            Theoretically, as a premature infant grows, he/she may not be able to distinguish, on a subconscious or conscious level, between the here and now of a stressful event and the past events of the NICU due to the atypical development of his/her brain.  In addition, if a premature infant’s brain is programmed to respond to constant stress, subsequently as he grows older, he may have a difficult time sorting out how to respond normally to everyday circumstances.  It is important for us to abandon the myth that infants and children can “get over it because they didn’t even know what was happening.”  Dr. Perry, et al (10) believes that “children are not resilient, children are malleable.”  We must recognize the potential effect from the difficult events in the lives of premature infants and children."

This information may be a lot to absorb, especially when we constantly hear "kids are resilient."  Sure, they can be, but we have to let them be real too.  Just because we want them to be resilient, doesn't mean they can or should be.  They don't even know the meaning of the word!

I think the bottom line is for teachers, parents, family and friends to be aware of some of the potential realities premature children may face, not to immediately label kids and to seek proper support and guidance from infant and child developmental programs and specialists if and when needed.  Thankfully we live in a country with these options and supports in place. I am always grateful for this!

To our amazing little future graduate of the Class of 2027, we're ready to help you and watch you learn and grow during this great adventure!

May Mania

May is just about on its way out and I'm exhausted!  May is a month I had aimed to try to not have children.  Seriously.  With family birthdays in March, April, May + Mother's Day, June - an anniversary + Father's Day, I saw July as being the best spot to try to have children, plus my husband and I liked the idea of having fun summertime birthday parties, like the ones I grew up with.

Instead, we had three babies due in July, who chose to show up as a our Spring Chicks in May.  So we work with what we are given, right?  Three little boys' birthdays within 10 days of each other.  Talk about exhausting!  One happens to land the weekend of Mother's Day and a party is usually thrown that Saturday.  This year, thankfully, we went a little smaller scale for the twins' birthday.  We made up for it 10 days later with 16 kids ages four and under, running around a hot, stuffy room with paint brushes as weapons in their hands.  This year's theme was Super Heroes, which seemed fitting, considering we think we've got some pretty Super Preemies, who battled so many odds and have come out of it spectacularly well.  We had the kids in a Batman, Superman and tried a Spiderman shirt for the Big Brother, but he wasn't having it that day! Of course! The shirt was purchased specifically for this day and he pulls Big 4-Year Old Attitude! Wow!

This month we also helped with the Ronald McDonald House fundraising again and for fun, I threw in running a garage sale.  One thing I do continue to wonder is, where does all this STUFF come from?  I even ask for donations or to pull back from excess shopping for birthday parties, yet, we have all of this STUFF...

Thoughts of piles of junk throughout my house aside, we've had a wonderful month with lots of nature walks and hanging out in the amazing sunshine, which we miss so much here in Canada during the winter months.  We've been making up for lost time!  We were able to get out to a picnic for Canada's National Multiple Births Awareness Day this past Sunday for with our Chapter of the Parents of Multiple Births Association.

So between all of this and my trying to plan and master part of my new job description, which is involving planning and developing of online blog, website and other social media content, my brain has been in overdrive...hence the lack of blog posts this month. 

Just some of the STUFF occupying my home!
Does it ever end??

Now coming up for the month of June is Spina Bifida & Hydrocephalus Awareness Month, here in Ontario.  I will help raise awareness and will certainly have a post coming up on the topic.  Bring on June! I am ready!

We've Come a Long Way, Baby!

The twins are 19 months corrected and 22 months actual.  I recently reviewed some pictures taken of me, my husband and the twins for Ronald McDonald House fundraising activities, while we were almost three months into our stay at the NICU.  I remember that day like it was yesterday.  It amazes me how sharp the images and memories are in my mind almost two years later.

Twenty-two months have been filled with hundreds of appointments and we've really come to appreciate the entire process.  This is not to say I have not appreciated the opportunity to have such a great team of specialists and experts following our twin boys the entire time, but lately the twins have been achieving new skills in leaps and bounds.  These are the times when I really reflect on all that they have been through and how resilient these little dudes are.  After so much time and effort we are beginning to see the fruits of our labour.  With hard work and determination and a loooooot of patience, the twins are catching on and providing us with hundreds of moments to be extremely proud of.

Our physiotherapist has worked the most with the boys and I really admire her determination and patience with working with these little guys, who at times can be quite cranky.  Some days all they want is to play with the balls found throughout the exercise room, while she wants to help them master the ability to pull up from a sitting position or stand and balance on one foot.  Some days are good, some days are not so good, but we take it all in stride.

Baby A is now able to stand on his own, without support for long periods of time.  He has taken 8-12 steps all at once, but is still not 100% confident in his abilities.  He is almost there.  There's no rush!  Baby B is still trying to figure out how to cruise along furniture and the coffee table, but he has taken some good steps and is really watching how is "little big brother" masters the steps just ahead of him.

The babies are coming out with new words or sounds with meaning every other day.  I think our excitement is amplified based on the fact we've waited longer than normal for all of the milestones.  They are able to follow instructions and are really showing they comprehend.  Communication has been slow to develop, as expected, but this too continues to develop at a quicker pace as time goes on.

Our little angelic Baby B has gone from being a passive little pushover to a little man who can take care of himself and tell Baby A he's not the boss anymore.  A few months ago, Baby A would simply snatch toys away from Baby B and Baby B wouldn't make a peep.  He'd just watch as his fun car zoomed across the room in someone else's hands.  These days he'll tear after him at a fast crawl pace and snatch it back, maybe poking his brother...or perhaps yanking on his hair until the toy is free.  It sounds terrible, but it makes me laugh as it unfolds and I see these two little guys are really beginning to interact with each other and develop their own feisty little attitudes.

People still ask me if they are doing things that the average 22 month old baby would be doing by now, which I don't mind.  Usually the answer is, "no."  However, lately they've been catching on to so many things that I can give more detailed updates as to what activities they are up to these days.  Some people will ask me if they will start Kindergarten "on time."  That too, I cannot answer right now.  They still have a lot of development to catch up on, but I have confidence they will get there, in their own time.

I do wonder how they might handle pre-school settings and if they will need an education assistant there to assist throughout their days.  I wonder if they will be as strong and able to walk and keep up with their playmates in pre-school or Kindergarten.  These questions lead me to research and talk to people around me to find out what is best, what they can suggest and what other people in my family's shoes have experienced and done.  I've learned that asking questions now and preparing for the future leaves me feeling more confident that no matter what challenge we might face, I will have a strong support network there giving me advice and support along the way.

Hop, Hop, Hopping Along

Still blog hopping, after a break to take my horrid mini-van to the shop and then putting my 3 kids to bed...here I am! Still trying to figure all of this out. Probably making some rookie mistakes...no, I know I am! Trial and error!

If you are visiting from one of the blog hops I have stumbled on tonight, please say hi and follow if you would like!

O' Canada

Today is a day I consider myself to be a very lucky person.  I am Canadian, born and bred.  Today we have our Veterans to thank for the privilege we have living in our democratic and beautiful country. 

Many years ago legislature passed a universal health care law, which entitles Canadians to excellent health care, without having to fork over thousands of dollars out of pocket for it.  We receive coverage for preventive, maternity, infertility and illness related medical visits.  We are extremely lucky to live in a country, which feels health care is something each citizen deserves.

There have been many times when people have asked me if I was thankful that I did not live in a country in which our twins’ and first son’s medical expenses would not have been paid for automatically.  I was very thankful for that.  We don’t call them “million dollar babies” for nothing!  When we come to think of the expenses that over 3 months of being in a NICU would have racked up X2, we are extremely thankful to live in a country that supports all its citizens, regardless of age, socioeconomic background and ability to pay for it.  Had we not lived in Canada and possibly not had the “right” benefits or insurance company’s willingness to approve all the medical bills, I can’t imagine how we would feel and how a family would survive it.

Over the last few months I’ve been reading more about the needs of premature babies and viewing others’ blogs.  I came across one particular U.S. blogger talking about her fight with the insurance company to ensure her premature baby received the medication for a common fall/winter/spring illness—Respiratory Syncytial Virus (RSV.)  She had to fight with the insurance company to receive something her child needed?  Something doctor’s support and administer without question if you have had a low-birth weight or premature child for fear of such children acquiring it and not being able to fight it?  That was a scary thought to me.  Such shots cost hundreds of dollars just for one to be administered, let alone up to 5 shots through the winter months.

So, needless to say, one of the many reasons I am very thankful to be Canadian is because of our world-class health care and universal health coverage.

Thank you to the Veterans who helped keep our country free, the citizens and politicians of the past that worked hard to bring universal health care to reality and to those who continue to fight to maintain this amazing service to all Canadians. 

Meet Preemie #1

My experience with premature babies has been a whirlwind.  Married June 2007, with one preemie arriving 11 months later and two more preemies arriving one month before our 3rd anniversary! 

My first preemie miracle entered my life in May 2008.   He arrived eight and a half weeks early, much to everyone's surprise.

Prior to having my first preemie baby, I had never really known anyone personally that had dealt with the premature birth of a child. 

I felt alone and as though my friends and family couldn't really identify with all the mixed emotions my husband and I were living with.  I felt I had been robbed of the ideal baby arrival.  My ideal and really the only thing I'd ever considered included a trip to the hospital, the anticipation and process of labour and delivery, and then a beautiful baby for everyone to come in and "ooh and aah" over, while I sat in my hospital bed with a big, happy new mommy smile on my face.

Instead, my reality consisted of not feeling too well one evening, something just not right.  I called my midwife who told me to be on the safe side to go into the hospital to meet her there to be checked out.  Most likely I was experiencing braxton hicks contractions, as I was at 31 weeks. 

I took my time packing a small bag, just in case.  I was oblivious to the fact that I was in labour, as I just didn't expect it.  I expected this baby to be late.  I didn't feel what you hear about your entire life from mothers, friends or from anyone else.  I just "didn't feel right."  I honestly thought I had some terrible bowel obstruction or kidney stones, as the discomfort began to get worse after I spoke to my midwife.

I arrived at the hospital with my husband, who parked the car, while I went in to check in at the desk.  My husband and I didn't have any concerns about me being left alone...because I wasn't in labour, right?  The lady at the desk didn't seem too concerned either by my overall demeanour, as she certainly didn't rush to get me checked in. LOL.

We arrived at 11:35 P.M. in the parking lot and our beautiful baby boy arrived at 11:53 P.M.  He arrived 18 minutes after we got to the hospital!

Once I got up to the labour and delivery ward everything moved quick.  I was examined, only to be told I was fully dilated and I didn't even know it!!  How could I not feel the pain I'd always been told was the worst pain a woman could go through?  Why were there no symptoms? 

My son was born within a few moments and he was rushed into the nursery for high needs care.  He was breathing on his own, but about half an hour later he began "grunting." Grunting is the actual term the doctors used and is in reference to the small  grunting noise a baby may begin to make if having a hard time breathing.  He was then intubated to aid him with his breathing.  I still had yet to meet my little boy.  When he was born they whipped him to my left side, showed him to me and then took off to get him checked out.

Our hospital is not equipped with a NICU and therefore he had to be transported out to another hospital with a Level III NICU.  There was talk of flying him out to Ottawa, Kingston or even Buffalo, where beds were available!  First came the shock of my baby's very early arrival and now there was the shock that we may have to let our baby go in a helicopter without his parents to a NICU hundreds and hundreds of kilometres away or even into the U.S.!  I was mortified and my husband began preparing his mind to drive a very long trip to meet up with our baby.

Thankfully, our baby was able to find a bed about 100 kilometres away and in a city with a Ronald McDonald House operation.  We were very thankful for this sudden change of events!

After five days in a Paediatric Critical Care Unit, which was able to provide dedicated 24 hour nursing care, just as a NICU would have, our son was able to move to a Level II NICU near our home.

Our son was lucky, and after about a week of CPAP to aid in his breathing, the new focus to get him home was getting him nursing and gaining weight.

Our boy was able to come home when he was 3 weeks and 5 days old--35 weeks gestation.

My next blog will be about our twins' early arrival, just shy of two years after our first preemie arrived.

Thanks for reading!