15 Jun 2011


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!

7 Jun 2011

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! :)

1 Jun 2011

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...