Happy Belated Birthday!

It's hard to believe more than a year has passed since Elie arrived so suddenly.  Everything happened  quickly in those early days.  There was a strong urge for him to get to the next milestone that we often found ourselves living in fast forward.  Now at 13 months adjusted (15 1/2) we feel more settled, and confident that he is going to be okay.  So much so that for his first birthday we returned to the NICU to say thank you to all the doctors and nurses.  They could hardly believe how big he was, and how well he was doing.  And just before we were leaving we saw a family new to the NICU. The mother was still in a wheelchair from her section. The nurse escorting them leaned over and told the couple that Elie was a 29 weeker, trying to provide some reassurance to the mother that her baby would also be alright.  And I saw relief on the woman's face; Real relief that things might be okay.  That brief exchange made our visit worth it.

All I wanted to hear in those first few weeks was that he would be okay.  A few close friends gave me that, and even some of the doctors were prepared to say it.  It was what I needed to hear.  And it gave me time to cope with what was happening without being constantly afraid of the unknown.  Everything has turned out okay and he is walking and chatty and the happiest little boy I know.  I couldn't have asked for a more wonderful son. 

We are so grateful for all the help we got, even if all it was sometimes was that reassurance that one day the NICU would feel like a distant memory.  Sending lots of appreciation to the amazing staff at FMC and RGH.

JLL

Canadian NICU Support Foundation: World Prematurity Day at Foothills Medical Centre

Canadian NICU Support Foundation: World Prematurity Day at Foothills Medical Centre: Hi Moms and Dads: If any of you are in Calgary, Alberta, we would love to have you join the Foothills Hospital in recognizing World Prem...

SMILE Cookies in support of NICU

http://www.timhortons.com/ca/en/difference/smile-cookies.html

Alberta babies more likely to be born earlier, smaller

Alberta babies more likely to be born earlier, smaller

Mother's Day Run

Injured boy, 8, dedicates Mother’s Day Run to mom killed in accident (with video)

MOTHER'S DAY RUN

TEAM ELIE WAS AWESOME TODAY, THANK YOU TO ALL OUR FRIENDS AND FAMILY FOR COMING OUT AND RUNNING/WALKING IN SUPPORT.  OVER 14,000 PEOPLE CAME OUT THIS MORNING TO HELP RAISE MONEY FOR THE CALGARY NEONATAL INTENSIVE CARE UNITS.

WE ARE FOREVER GRATEFUL TO THE DOCTORS, NURSES AND ALL THE STAFF WHO HELPED IN THOSE EARLY DAYS.  WE ARE IN AWE OF EVERYTHING YOU GAVE AND THE INCREDIBLE DIFFERENCE YOU HAVE MADE TO OUR LIVES.

THIS WILL NOW BE OUR MOTHER'S DAY TRADITION - A GOOD REMINDER OF LIFE'S BLESSINGS.

Benefits denied! UPDATED

I just found out today Manulife will not cover rental or purchase of breastpump under my benefits plan, notwithstanding that it is considered medically necessary.  Given the length of stay in the hospital, his inability to breastfeed afterwards and his allergy to milk protein, I am appalled that a carrier would deny such expenses.

Stay tuned, lets hope that with a little more investigation the appropriate person intervenes.

UPDATE:

I raised the issue with my Benefits Manager and she agreed to follow up.  She advised me yesterday that my employer has expanded coverage to include pumps under their contract with Manulife.  Not only have they taken steps to ensure my expenses be covered, but any colleague will be able to claim for the cost of a breast pump.  This is such a relief and I am so impressed with how they handled this matter.  THANK YOU MR!

Sportchek Mother's Day Run & Walk 2012

Premature Baby Deaths Preventable

http://www.guardian.co.uk/society/2012/may/02/premature-baby-deaths-preventable-report

15 Million Premature Babies Born Each Year

http://www.cbc.ca/news/health/story/2012/05/02/premature-births.html

Hostage to the Pump - PROS & CONS

For the first 6 weeks of his life, my son received all feeds by nasal tube.  The nurses explained that usually they see babies discharged (provided they meet the other discharge requirements) approximately 5-7 days from the time they are receiving 50% of their feeds by bottle or breast.  It wasn't until he was 35 weeks that we even started to introduce the bottle.  We had focused on feeding him with the bottle because it was easier to measure his intake and he was a very slow gainer.  The biggest issue we had in the last 3 weeks of hospitalization was his slow weight gain.  We tried to get him breastfeeding but we were nervous about how much he was actually removing from the breast and so we stuck mainly to bottle.  After much discussion with the doctors, we agreed to maintain the bottle feeding and only increase breastfeeding one additional daily feed per week.  My father was gravely ill and so I liked the flexibility to travel without my son that pumping gave me.

I struggled with whether there was any downside to continuing exclusive pumping and asked nurses and doctors their opinions. They all told me it did not matter, other than breastfeeding removes milk more efficiently so I may spend more time pumping.  In my case, they were wrong and it did matter.  If I had the choice again, I would have tried harder to breastfeed rather than express my milk.  Here's a point form list of the pros and cons associated with exclusively pumping:

CONS

1. Time: it takes twice as much time to feed my son than if I were breastfeeding. 
2. Difficulty timing pumping and feeding: invariably my son was hungry whenever it came time for me to pump.  Over the last 7 months I have often found myself in the awkward situation of not knowing whether to feed him or pump.  This results in either an unhappy baby or uncomfortable breasts.
3. Drop in Milk Supply: within 6 weeks of my son returning home, I noticed a significant drop in my milk supply.  I believe the inefficiency in pumping and less skin to skin contact are factors that contributed to that drop. Because my supply dropped, I also began to ovulate which resulted in a further drop in supply.  The drop in milk supply has caused so much anxiety it is difficult to put into words.
4. Travel is difficult: I mistakingly thought pumping would give me freedom but it hasn't turned out that way.  The last thing I want to do when I'm on the plane is pump in the bathroom.  It is much easier to breastfeed in your seat - there is no way I am ever pumping at my seat, even under a cover.  The pump is so much more conspicuous than a suckling baby!

PROS

1. Help from others: Other people are able to feed the baby because he/she is bottle fed.  Not only does that lift some of the burden from your shoulders, but it permits other people (fathers, grandparents) to more fully participate in caring for the baby.  It allows others to bond with the child and learn to comfort the baby in a way that is often reserved for the primary caregiver.  
2. Time away: Allows me to be away longer than I would be able to be if I were breastfeeding.  I've made several trips out of province for family matters and my son is able to rely on my frozen reserves during that time.
3. Reserves: I was able to build up a large supply of frozen milk that I rely upon when I'm away or when I want to partake in a few too many glasses of red wine.  
4. Better monitor intake: We are able to monitor precisely what my son's intake is because he takes a bottle and therefore better able to know if he is getting enough milk or going through a growth spurt.     

Ultimately, the decision to exclusively pump or not may not be your decision.  We were warned that it can be difficult to get your baby to breastfeed after being fed via bottle.  There is no question that babies are 'lazier' after receiving milk by tube or bottle and it can take weeks even months to get them breastfeeding.  Whatever you decide to do, recognize that it is not easy and you should be proud of the effort you are making.  Good luck!

Breast milk bank, second in Canada, seeks Calgary donors

Breast milk bank, second in Canada, seeks Calgary donors

Preemie Clothing

It is difficult to find clothing that fits preemies.  The following is a list of the best places to shop in town for small baby clothing:

Edamame Baby on 32 ave SW in Marda Loop
Sears Chinook

There is also an online store that is a good place to check out if you're pumping at home with nothing to do one night while your little one is still in the hospital.  Check out http://www.preemiestore.com/

Australian couple faces $1-million hospital bill after baby born in B.C.

This article helped me do the math on how much was spent on Elie's hospital stay.  We are so grateful!

http://www.theglobeandmail.com/news/national/british-columbia/australian-couple-faces-1-million-hospital-bill-after-baby-born-in-bc/article2383743/

News on Common Antibiotic for Prems

http://www.cbc.ca/news/health/story/2012/03/16/asthma-antibiotics-gut-study.html

BRILLIANT BEGINNINGS

Brilliant Beginnings is a one-stop resource centre for parents, infants, and toddlers (newborn-4 years) in the Calgary area. Their goal is to equip parents with the tools to understand early development and how to optimize this crucial time of learning. 
Brilliant Beginnings' curriculum utilizes a multi-sensory, active-learning approach that is shown to enhance learning in young children. Classes focus on contextual learning (themes), language & literacy, motor, and problem-solving skills all while having tons of fun! 

Brilliant Beginnings also provides a variety of services to support your child's social, emotional, and cognitive development. These include parenting support (in your home), parenting workshops, and public education.


The founder, Melanie Gushnowski, M.Sc has a Masters in Applied Psychology with a major in Human Development and Learning.  I understand Melanie  formerly worked at the early intervention clinic located at Alberta Children's Hospital and has lots of experience with prems.  This is a great resource for those of us who do not qualify for the perinatal early intervention clinic. 






http://brilliantbeginnings.ca/

Interesting...HMF by donated milk

Not available in Canada but maybe one of the best ways to help little ones...

http://thechart.blogs.cnn.com/2011/08/15/fortified-breast-milk-helps-preemies-grow/

TOP 5 RULES TO FOLLOW IN NICU

1. DO NOT COMPARE YOUR BABY TO ANY OF THE OTHER BABIES IN THE NICU
All babies are born under different circumstances and there are so many factors that influence how your baby is progressing.  You do not have all that information and the exercise of comparing your infant to the infant in the next bed who may be gaining weight faster or seeming to be getting better sooner will not be helpful.

In the event that it is your infant who is gaining well or seems so much bigger than the next infant, it is even more important to keep those comments to yourself.  A parent who is watching their infant struggle does not need to hear you confirm their worries.

This happened to us a few times, and it was hurtful to hear someone comment on how small or sick my son looked. These parents most certainly must have assumed I couldn't hear them discussing us with the nurses but I could and it was the last thing we needed in an already stressful situation.

2. DO NOT BRING MORE THAN 2 PEOPLE BEDSIDE
This is tricky.  Of course you want to show your family your baby and it is so tempting to to have your parents of other children in to see your preemie.  This is understandable.  But the NICU has rules, and they ask that you have no more than 2 people bedside during any visit.  You are not the only person who wants to have family visit the baby, every parent in the NICU feels the same. But if everyone disregarded the rules it would be absolute mayhem.  On low flow hours (early in morning or late evening), the units are often quieter and bringing an additional visitor (ie two grandparents + yourself) may be permissible but ask first.  Babies are very sensitive to noise, and 2 or 3 people per bed can amount to a lot of extra talking/noise in the NICU at any given time.  Please be sensitive to the other babies, and families and do not take advantage of these guidelines.

3. PUT ALL BAGS, PURSES, COATS AND FOOD IN A LOCKER
We witnessed a number of women bringing their purses bedside.  I have no doubt that the nurses told them that was unacceptable but since it occurred fairly regularly I will highlight the rule again.  Purses are often put on the floor, then the counter where items that come into contact with your infant are placed. So many germs and bacteria can be transferred this way.  LEAVE YOUR PURSES IN A LOCKER.

4. DO NOT HOG THE BREASTPUMPS
At Rockyview, mothers do not have a separate pumping room and pump milk bedside.  There are a limited amount of pumps and they have to be shared. Once you are done with a pump, clean it and return it to the hallway where you found it.  If the NICU is quiet and you intend on using it again shortly, at the very least clean it and place it in the pod hall so that others can spot it if they need to borrow it quickly in between your pumping sessions.  I heard stories of mothers hiding the pumps in their pods (crazy) and refusing to share, but never experienced it first hand.

5. CLEAN EVERYTHING YOU TOUCH
Once you are done with a chair, breastpump, pillow, scale, wipe it down with cavi wipes.  CONS and other infections may be able to be prevented if people diligently wash their hands and sanitize the items/objects that come into contact with the infants.  Also return all used gowns, clothing and pillow cases to the proper laundry hampers when you are done with them.

Food for Thought: To HMF or not to HMF

After battling CONS in the first few weeks of his hospital stay, my son dropped quite a bit of weight and the doctors were anxious to see his weight trending in the other direction.  Without much discussion, the put him on Human Milk Fortifier (HMF); one pack at first, increasing to two packs within 48 hours.  I attended rounds the day they decided to put him on HMF and no risks or potential side effects of the move were ever discussed.  


Within two days my son had blood in his stool and an xray revealed a lot of air in his intestines.  The doctor sat me down and explained that they were not certain, but had concerns that he was suffering from a very serious disorder called NEC.  One in three babies who are diagnosed with NEC die, so this potential diagnosis was very serious.  They immediately discontinued oral feeds and placed him on fluids to give his gut a rest.  My son did not eat for two days before the next xray revealed that it was not NEC.  They put him on an elemental formula Neocate which he tolerated.  Since it wasn't NEC, they believed that my son had developed a cow's milk protein allergy, possibly because of the early introduction by HMF.  I ended up on a dairy-free diet (which is harder than it sounds) because the protein transfers through breastmilk.  He remained on Neocate for almost 10 days at which time they slowly re-introduced breast milk.  As you can imagine, two weeks of little/reduced feeding really impacted his growth rate and his weight dropped from the 50th percentile to below the 3rd percentile (even on an adjusted chart).  


We were unable to find studies that clearly link HMF to NEC or NEC scares but heard countless stories from other doctors, nurses and moms where there seemed to be an undeniable correlation.  Doctors and parents are in such a hurry to fatten up the baby and supplementing breastmilk seems like the easiest step to accomplish that goal.  And while this goal is understandable, parents need to ensure they understand and consider whether HMF is right for their little ones.  The problem is the young gut often cannot handle cow's milk and even if NEC does not develop, the possible setbacks from a NEC scare should be considered before such steps are taken. 


I wish I had realized at the time the risk associated with introducing cow's milk at such a young age; had I known I would have insisted they push up feeds rather than use HMF.  I would never have let them use HMF on Elie.  If you find yourself in the same boat, speak to the neonatologist and see what other options you have or if you can you try to merely increase volume rather than supplement with HMF.  Breastmilk is easiest to digest and safer for your baby.


The links below provide some additional information for your consideration.  If you find yourself in the same situation, please leave a comment so that others can hear your story. 


http://www.ncbi.nlm.nih.gov/pubmed/17100376
http://pediatrics.aappublications.org/content/114/6/e699



Thanks

Hospital Grade Breast Pump

If you were like me, and had no warning of an early delivery, the last thing you had probably had a chance to get was a breast pump.  I hadn't even really given the whole feeding exercise much thought, and assumed things would just come easy.  Good quality breast pumps are crucial for moms of preemies so that we can build up our milk supply while the baby is maybe too young to breastfeed or still in the NICU.  Nurses warned us that even the most eager breastfeeders went home being bottled at least half time so we realized right away the importance of getting a good quality breast pump.  

The hospitals provide a print out of all the pharmacies in town that rent breast pumps.  We went through a dozen before renting the Medela Symphony (same as the hospital) from the Shoppers off of Macleod Trail.  They only have a few pumps so call ahead.  When my pump's motor gave out and they had no other pumps to rent, we found One Tiny Suitcase.  They rent Medela hospital grade breast pumps with free delivery. The cost was the same as with Shoppers and they had all the accessories (bottles, shields, etc).  Definitely worth the cost of a good quality pump.

http://www.onetinysuitcase.ca/