Lockdown

While reading through some postings on Facebook today I came across the term, "Lockdown," used in reference to a preemie baby no longer being in the NICU...or "Lockdown."  It actually made me laugh because I often referred to our twins' discharge days as the days our babies were no longer in "Lockdown."

What the heck am I babbling about, you ask? 

Well, as a mother of three preemie boys, who all did time in a NICU, I am referring to the feeling some mothers (if not all) get when they think of the time spent in a NICU.  As we all know, none of us actually want to spend time in a NICU.  We'd do anything not to be there.  We wonder, how did I end up here?  What did I do to deserve this??  There are times of irrationality and just feeling tired and somewhat sorry for ourselves.  We are human afterall!

Although the NICU is a place for babies to heal and grow, it can be a long, painful process on the hearts, bodies, minds and souls of the parents looking into the plastic, which is encasing their babies.  It can feel like you're an innocent person thrown into hard time prison.  That sounds terrible, I know, but that is how some of us parents can feel when in the moment.

The following is a description of my daily ritual while in the NICU:

• 8:30 AM Arrive on the NICU floor and check in at reception.  
• Wait for the receptionist to call in to make sure it is okay for "mom" to enter the babies' room or pod. 
• If there is something going on in the same pod or my babies' nurses are busy with them, I may be asked to go and come back in half an hour...sometimes more...
• If I can go in, I go in through the locked doors, pass another desk with another business administrator, walk through various hallways, and then wash my hands/arms before going into their "bedrooms," which are open to the rest of the "pod" and is made private by pulling a curtain across if I want or need.
• Spend several hours, watching babies in their isolettes, changing diapers every three hours, and assisting with feeds or nursing a baby depending on the situation.
• Go for a break outside the unit.
• Wait for very slow elevators.
• Finish break and go back to the receptionist, ask to be buzzed in past the locked doors again.
• If something has changed siginificantly during the fifteen or twenty minutes I was gone, I may not be able to go back in right away.  I may have to wait some more.
• Once I get back in, I may go pump in a quiet room in solitude with a curtain drawn, staring at a wall.  Sometimes I might talk to a faceless person on the other side of the curtain.  LOL. 
• Once finished pumping, I will go back into the pod and visit my babies.  Watching them sleep.  Maybe holding one or both of them at separate times, depending if they are healthy and strong enough.
• My day would end anywhere between 9:00 and 11:00 PM, depending if it was bath night.  Baths are done at the very end of the night usually, when it is quieter on the floor.  This is usually the first diaper change/feed time after the new nurse comes on at 7:30 PM.  Baths are done every other day.  Sometimes the bath is just "top and tail," not a full dunk in a bath tub. 
• I would walk back to where I was staying in the dark night and then pass out in bed as soon as possible in order to start all over again the next morning.
• I would often call in during the middle of the night to "check in."  Sometimes I would be told it was not a good time and to call back later (?) or I would hold and hold, both situations leading me to begin to worry that the reason no one was coming to the phone was because one of my babies was causing a ruckus, having an episode or worse!  Those were terrifying times.  It happens to all preemie parents at least one time or another.

I did this for 112 days.  It began to feel like a punishment and it was resembling a prison sentence or being an outsider trying to gain access to a prison.  I know now and I did know then, that of course it was not a punishment...but it felt like it.  My mind knew that our predicament could not be controlled and that it was not a punishment, but my spirit had taken a beating. 

I wanted to walk out those doors with both babies and go home to the comfort and happiness I was missing and needing.  I started to jokingly imagine picking a hole big enough to climb through and disguising it behind that "Mom's milk is best" or "RSV" poster on the wall...Shawshank Redemptionesque (I watch too many movies.)  Anyone will tell you I look at things and get through things with humour.  Our assigned social worker and regular nurses that cared for the babies knew this.  Thank goodness for my humour because I needed as much humour as possible to get through this experience. 

The Sunday before Twin B was discharged, while Twin A was already waiting for his brother on "the outside," I told the nurse caring for Twin B that day, that my experience was feeling like a prison sentence.  She did not like that statement one little bit!  It is hard enough to go through the experience, but to have a staff member looking after my baby, who didn't seem to put it together that we had been through a long and terrifying haul over 3 months, that was even more frustrating.  When I was talking to this nurse and breaking down the similarities I saw between my daily ritual and that of a prison, I did tell her that of course I appreciated and respected all the work the staff had done up until that point and that I didn't see the staff as prison guards per se, but I did feel like all my actions and my babies' actions were dictated and decided in advance for the most part.

I had to gain access to the NICU by checking in outside the locked doors...change baby, feed baby, put baby to sleep every 3 hours, day in and out...

Some nights I would be told it was not a good night to bathe a baby, or my timing didn't work for the nurse on with the baby that night.  Pardon?

All of these things add up to make a parent feel like there really is little control.  It's frustrating.  Nevermind the fact that we were in contact isolation, wearing our gloves and gowns for each visit.  This lifestyle is just not normal and I verbalized it...to the wrong person. 

I can only imagine what some of the nurses must have thought of the crazy mama of beds A1 & A2, after I said that!  The nurse of that Sunday afternoon did pass this information on to the nurse that evening at shift change, which was to be expected I suppose.  I speak my mind sometimes, I can't help it!  It made me feel better to get my frustrations off my chest that Sunday afternoon and I felt the nurse, who had been working in the field for 20 years and had two sets of twins siblings would comprehend...but I don't think she did in the moment!

In anyone's line of work...especially social services, customer service and I bet even nursing, we drill into our heads, "It's not personal" or "Don't take it personally," when we hear the opinions and thoughts of others', which we may not like or want to hear.  I'm sure this particular nurse did let it roll off her back and move on, but I bet she will never forget my comparison and maybe she'll take that and work with the idea and ensure her future families don't get to the point of feeling like I did.

Some NICU grad parents may read this and think, "I never felt like that," while others will think, "So I am not the only one who felt like she did!"  In speaking to fellow NICU moms I know there was consensus on how I was feeling and the few nurses we had during the last few days in the home stretch could at least empathize and understand how I was feeling.

I choose to write about these thoughts so that other NICU parents can either relate or at least understand not everyone's experience will be the same.  As well, I hope that others that have not and hopefully will not experience the NICU, will be able to identify with at least this NICU Grad Mom's feelings of a very scary and emotionally draining time. 

World Twins Day - July 3, 2011

Happy World Twins Day to all my readers...if there are any! :) 

It seems there is always something to celebrate each morning I wake up.  I always thought the idea of twins was cool and unusual before I had my own.  It seems these days, however, when I am out and about most people I encounter know twins somehow.  They are often moms of twins that I come across and they have all kinds of advice for me.  Some of the "advice" some of these people give, I wonder why they even opened their mouths to tell me because it is not always so inspirational and sometimes kind of depressing!  For example,  "Having twins never gets any easier."  Gee...thanks!

To start, my experience was a rude introduction to having twins, seeing as they were only 27 weeks along.  Most people I have met in person have twins that were "termies" or 2-4 weeks early, but never 27 weeks or less. 

I do have to say, however, that as the days pass, it really does get easier.  I am in a routine.  I know how to deal with my two babies and how to get through the days with their older brother without wanting to hide (most days I can do it anyway!)

Before my babies were even a thought, I never realized how hard it is to pick out two boys' first and middle names at the same time (we actually had 4 first and 4 middle chosen.)  I never realized how much it cost to have two babies at one time...especially the diapers...up to 20 diapers a day in the early days?!?!  Ouch.  I think our bank account is still recuperating from the shock.

Never did I think how often a baby pees or poops would matter.  For about 12 months we talked in weight gain of grams, not pounds or ounces.  The smallest weight gain was a celebration, especially for the one twin with a heart problem called patent ductus arteriosus, which was making his body burn more calories than needed.

There are so many things to think of when you have twins, but most of the time it is nothing but fun. 

The best part about having twins is seeing two sweet little smiling faces and seeing the smiles they bring to others' faces on a daily basis. :)

So Happy World Twins Day and I hope the twins that you may know have brought a smile to your face today. :)

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. 

Perfection

Being a preemie parent comes with many challenges.  You never really know how things will turn out when a premature baby is born.  Some babies do spectacularly well and are out of the NICU quickly, then on to live normal lives.  Other babies may not be so lucky and it seems if one thing can go wrong, so will a hundred others.  It is often very hard to stay positive when you think that everything seems to be falling apart every time you turn around.


Each person is different, just as each pregnancy and delivery is different.  We all face our own challenges or needs in life and we work with what we've got.  Unfortunately, when it happens to babies right from the start it seems so unfair.  As parents we question, why is this happening to my baby?  Is there something we could have done differently?  We all know the answer is, "No."  Things happen sometimes that we have no control over.  What we do have control over is how we work to get over these challenges or setbacks (as we often call them in the NICU) and look forward to the future. 


Prior to our twins' arrival, as I've mentioned in a previous posting, we had nothing but high hopes and great expectations.  During my pregnancy I often envisioned my twin boys at around the age of 6 or 7 learning to play baseball and running the bases.  I always thought they'd live "the perfect life," that I had concocted in my mind.  We all have these ideals.  An ideal is a concept of something in its perfection.  As we all know, we are always striving for some kind of perfection, yet we each have differing opinions of what perfection is.


To me...
A baby born at term would be perfection.
A baby who has just come off CPAP and is breathing "room air" would be perfection.
A baby coming home from a long NICU stay would be perfection.


To a NICU Nurse...
A baby who is finally able to be held by its mother or father would be perfection.
A baby who opens their eyes and responds to voices would be perfection.
A baby who is able to breeze through a NICU stay without additional complications would be perfection.


To a Neurosurgeon...
A baby who has a severe Intraventricular Hemorrhage and it clears without medical intervention would be perfection.
A baby who makes it through the operation of inserting a VP shunt would be perfection.
A baby who makes it 6 months without any complications or infection following surgery would be perfection.


Having a life changing experience can really get you thinking about your perspective on life, those around you and what really matters.  I've learned to take things one day at a time and not get too ahead of myself.  I used to be a person who wanted to rush through things to get to the goal...I just didn't expect my body to do the same during pregnancy! :)   These days perfection is being able to spend time with my three growing boys and enjoy every minute of it!

An Isolating Experience Pt III

After being discharged from the hospital, you would think we'd be free and clear of any sort of isolation going forward.  Unfortunately other reasons for isolation began to come about.

Once home we gradually started inviting family and friends in for visits.  We had hand sanitizers and asked guests to either wash or sanitize if they were going to hold the babies.  If someone was sick we'd ask them to wait to come until they were better.  Everyone was very understanding of course. 

Baby A was just 6 lbs. when he was discharged, but had come a long way from 2 lbs. 1 oz.!  Baby B was about 7 lbs. by the time he was finally discharged (3 weeks after his "little big brother.")  He had come from 2 lbs. 4 oz.  Most people were too worried or scared to hold the babies, given what they had been through and many thought they would damage them just by holding them!  It was funny, yet not funny at the same time.  Unfortunately this was an example of how the babies were still somewhat isolated, given that they still weren't being given "free range" to be held by whomever, when ever and such.  Either way it was great to finally have them home!

Then fall arrived and winter.  Prime time for RSV season.  RSV is Respiratory Syncytial Virus.  It is a very common virus throughout Fall-Spring and many children will acquire it at some point by the age of two.  Unfortunately, for low-birth weight babies, such as preemies and our boys, RSV can be deadly. 

RSV can be caught from people who cough/sneeze into the air, haven't cleaned off their hands after doing so and then touching, holding or kissing an uninfected individual...think babies.  Take this virus into a daycare and it is very difficult to avoid children coming down with it.  It will live on children's toys in daycares and in homes, on any surface people touch.  It is impossible for every surface in a home or daycare to be wiped down all of the time, no matter how hard we try. 

Premature babies and other "at risk" babies receive a monthly RSV shot to help fend off this illness throughout the "season."  Their older siblings most likely do not receive the shot.

Our oldest son was put into daycare as a means to help me out during my days, in which I am running from appointment to appointment, place to place trying to get as many things done one day--just to start them all over the next.  It was difficult for me to manage our 2 year old, along with the unrelenting calendar!  This is why he went into daycare a couple days a week. 

No sooner did he get into daycare and he was bringing home every germ known to man.  This was after I thought going to a private home with only 4 other children would help to avoid the "cooties."  NOT!!  Our first son was never sick until he started daycare.  He wound up bringing home coughs, runny noses, throwing up and then pink eye twice!  Needless to say, our immunity-challenged babies got more than their fair share of sicknesses this past winter! 

So if you happen to know a mom who has had a premature baby or multiples and you haven't seen much of her, don't chalk it up to anti-socialization.  More than likely she has been sitting in countless hospital waiting rooms, running from physio session to dietician meeting or protecting her child from germs that can do some serious harm.

Mommyhood--It's a tough job, but someone's gotta do it! :)

An Isolating Experience Pt II--Pseudomonas

Then came a terrible culprit I had NEVER heard of before in my life.  It is common for babies that have long-term stays in hospitals to be introduced to bacteria, no matter how hard the staff and parents try to avoid it.  We wash and sanitize our hands, right up to our elbows each and every time we enter the NICU.  We even remove our rings and leave them at home if they are a bit of a fancy design.  If you've got just a standard wedding band, you take it off when washing your hands.  Having twins we had to wash in between handling each baby.  If we even so much as touched the outside of one baby's Isolette, we had to wash our hands again at one of the many sinks in the unit.  I was so exhausted and sleep deprived in the early days at the hospital, so I was constantly washing my hands because I didn't want to forget that I may have touched a table or an Isolette in between my two babies.  My hands were raw, cracked and just plain gross, but it was a sacrifice I was more than willing to make to keep my babies as safe as I could.

On the worst day possible, I was told one twin had come down with a hospital Super Bug.  I had heard of Super Bugs, but never actually knew their true names.  We were introduced to a germ called Pseudomonas.  I got this news over the phone, when I was back at the Ronald McDonald House in between visits at the hospital.  I was warned not to worry, but when I got back I would see that my twins were separated and one was now under Isolation and we'd have to glove and gown before going into his room!  Barf!  I was sickened by the thought of my poor little baby getting a germ in a hospital in which I thought was there to protect him.  Where did this come from?  Who gave it to him??  How could this happen?  These were the many things my husband and I thought about as we rushed over to the hospital, a 5 minute walk away.  Not only was my baby being prepped for brain surgery for the next morning, but now I was being told that the same baby had this disgusting bug??  What would this mean for the surgery, which we'd been waiting 2 long months for??  I was spazzing out inside.

We went into the unit, and no longer were our sweet little boys next to each other in Pod A1 and A2.  Now the "healthier" baby had been moved to a single bed "room" and the other isolated baby was moved to an entirely different "pod," out of my sight. This was my most depressing time.  My hope when we arrived in the NICU on the first day was to have the twins by each other's side for the duration of their stay, which in the beginning I knew would be very unlikely, but still it was my hope.

This experience became one of the most confusing times.  First of all, where did this bug come from??  Second of all, how is this even possible to happen in a hospital??  Third of all, is my son going to have his long awaited surgery postponed???

No one seemed to know the right answers.  I learned that super bugs can grow in many of the publicly travelled places in a hospital, especially in sink basins, which all staff and parents use! Gross!  No one could say exactly where it could have come from.  My biggest, most concerning question was whether or not my child, with Hydrocephalus was going to get his long-awaited surgery. 

The nurse in charge of my isolated son that night told me there was no way he was having surgery the next morning with this newfound information!!  I was beside myself.  My instincts were to sit with my baby and "protect" him.  God only knows from what, but that was the pressing need in my very disoriented mind at that time.  We had waited 2 long, terrifying months to get to the point he could have surgery to try to fix the hydrocephalus and now we were being told that it may not even be able to happen.

Unfortunately, when our child's new illness came about, so did several other more urgent situations with other babies.  The unit was abuzz with various types of specialists and staff members, tending to several babies at once.  I wasn't getting answers very quickly because other babies were demanding attention at the same time.  I was thankful my child was not in a life threatening situation, but at the same time I wasn't getting to talk to the doctor on call and staff that could possibly help alleviate my fears.  There I sat, in gown and gloves, not able to touch my baby too much to begin with and not sure that I should, while I waited for a staff member to come talk to me.  This was day one of what would turn into 58 long, looong days in isolation.

Eventually, late that night a doctor was able to clarify that our child had a Pseduomonas colonization (lovely thought) and not an actual infection.  Had he had an infection he would not have been able to have the surgery for fear of having the infection enter the brain and causing major damage.  Thankfully the surgery went on as planned the next morning.

Unfortunately for our other baby his lab results came back the day of the surgery and were positive as well. 

I learned that many of the staff members, although aware of the names of certain conditions, bugs or whatever, may not actually be able to explain what they really mean and what the consequences may be.  The example of our evening nurse telling me surgery would be a no go, was because she misunderstood that our son did not have an actual infection.  This was one of my most frustrating experiences!  It was usually the nurses who had ample information and were quick to give it when asked.  Unfortunately, some staff were also misinformed or unclear and sometimes gave me inaccurate information.  I learned that when it came down to some things I would have to wait to speak directly to the doctor...who also didn't always have the answers!  Afterall, they are human too, so we have to remember they may not always have the answers we are looking for right away.  Most of the time the nurses would ask my questions during rounds if I couldn't be there, although it was rare I wasn't, and the doctor would find a time to meet with me in the day to discuss my concerns.  This was the best way to go about NICU business if it could wait.

The babies had to have 3 negative reports to be taken out of isolation.  That means a minimum of 3 full weeks in isolation.  The test was done every Monday evening and usually took until the Wednesday for the report to come back.  If I didn't have the results by Wednesday I knew that it was still positive, as I was told anything "suspicious" would be held a day or two longer to confirm if it was positive.  Wednesdays were coming and going and I was getting more and more annoyed.

I could no longer simply go from bedside to bedside with simply washing my hands with soap and water or sanitizer.  Now I had to wash my hands like a mad woman (which I already did,) put on a long sleeved ugly gown and gloves.  I had to do this for each baby, which meant I would go in to see one baby, derobe the gown and gloves, wash hands before leaving the room, don't touch anything or have to wash all over again and sanitize hands once out.  The protocol for this also became a bit of a joke, with each rotating nurse having their own take on the proper way to wash before and after being in an isolated room.  Some said before leaving the baby's isolated room, take off gloves/gown, wash hands, don't touch anything in the room and get out quick, then wash your hands again once out, then sanitize hands???  This was too bizarre.  I understand trying to protect others, but this was ridiculous. 

In the end I had to request one of the staff from Infectious Diseases to come and explain proper protocol and make sure staff knew.  We discussed how the instruction board that gets posted outside an isolated baby's bedroom is too simplistic being mainly pictures and really doesn't spell it out properly.  My babies were not the first ever to be isolated, so this too was frustrating that differing staff had differing opinions.

A lot of the nurses chalked it up to different experiences, a different number of years working in the profession and so on.  The fact of the matter is that there is a certain protocol for specific reasons and they do need to be abided by.  There are no cutting corners or doing things because one thinks something is better over another. 

If you are a parent caring for your child in an isolation situation you cannot be afraid to ask questions in order to make sure your child is safe, as well as the others in the unit.  If you see something you don't like--such as a staff member entering your child's room without gloves and gowns to collect garbage or to pick up something off a counter in the room or pressing a button on your child's monitor without a glove--bring it to the attention of your baby's nurse immediately. Don't try to brush it off because the bottom line is your baby's health is at stake and you are your child's one true advocate.

After my son's surgery he was not able to nurse for several days and low and behold the first full week after his surgery he had his first negative report come back.  I was elated.  We then got back to nursing when he was strong enough and the following week, positive again! 

Unfortunately because I was nursing two babies back to back, going room to room, this was enabling the pseudomonas to go back and forth.  I asked the nurses and doctor on call in the early days if this was a bad idea--me continuing to nurse both babies--and they said it was not likely that the bug would go back and forth........but it did.  Long story short, the doctors did end up telling me not to expect the babies to get 3 negatives 3 weeks in a row while in the NICU--in other words, you're not getting out of here with 3 negatives for each baby. 

This is when I began to understand that the germ is pretty common out in the great big world we live in and that most people are subjected to this bug at some point in their lives.  It lives in public washrooms and on ATM keypads, just for examples. EW!  The main issue with it being in NICUs or wards with critically ill, including the elderly, is that these patients' immune systems are compromised and to introduce such a bug to the system can be disastrous.

Eventually I did have Baby A cleared of the bug during a time I was not nursing Baby B (the unwell baby) as much.  The day we were being discharged I was told it came back positive again, which correlates to the fact I had started nursing Baby B again.  LOL.  It was a vicious cycle.  Finally, the day before Baby B was possibly being discharged he cleared too, as his brother had been home for 3 weeks and was being bottled and we were done with isolation and all the annoyances that came with it!  It was a long 2 months of isolation procedures!!

An Isolating Experience Pt I

When pregnant with twins I felt anything but isolated.  My quickly growing, gigantic tummy made it hard for me not to stick out in a crowd and my tummy was the talk of the town...or the parts that I made my way through on my daily outings, be it to work, the mall or the grocery store.  I don't believe I had ever talked to so many people during my regular outings when I was not pregnant with twins. 

My stomach was like a big beacon or a strobe light calling people in from afar to look at my stomach, touch my stomach and talk about my stomach.  I didn't mind all the attention my twins were getting even before they were on the outside, as it was exciting and fun to talk about all our great expectations, tips on raising twins and so on.

Then things changed.  In nearly the blink of an eye, the twins arrived and were put into Isolettes...also commonly referred to as incuabtors.  Right away they babies were isolated.  Isolated from their womb-mate immediately.  Put into a plastic box with fancy levers and dials to move them around, angle them, warm them and make them as comfortable as possible now that they didn't have my body to protect them.

We were in the NICU for 111 days + 1 day if you count the one night at the hospital they were delivered in and prepped to be transported from.  As soon as they were born they were whipped off to the nursery, leaving me alone with my husband and some unknown staff.  This is where the isolation began to set in.

Not only were my babies isolated, but my husband, son and I were as well.  Then came the grandparents and uncles.  Isolated from each other.  Forbidden to see the babies in the NICU for fear of introducing germs into a unit in which the sickest babies were with low functioning immune systems.  During a baby's development they do not start to receive many of the mother's immunities until around 31 weeks.  My babies didn't get that chance and therefore were very much protected during their stay in the NICU, as were their other NICU roommates. 

This situation was the first of many kinds of isolation we've experience along our journey.  My next posting will continue with the same topic...stay tuned...