Helpful Sites

Helpful sites:

General information re Prematurity
www.marchofdimes.com

Preemie Growth Chart
www.medcalc.com/growth
www.adoptmed.org/storage/VLBW%20Premature%20Boys.pdf

Developmental Milestones for a Newborn
http://tumblon.com/milestones/age/newborn

IVH
www.aboutkidshealth.ca/en/resourcecentres/prematurebabies/aboutprematurebabies/brainandbehaviour/pages/intraventricular-hemorrhage-ivh.aspx

Sweet Ginger Photography

Because it was RSV season, we felt particularly nervous about taking Elie to the mall or a studio to get his photos taken.  As soon as we got the news that Elie would be coming home soon, we arranged for Virginia of Sweet Ginger Photography to come to our house.  She didn't balk when we explained to her that everyone needed to use Microsan and that the session could only proceed if she was germ-free.  She spent 3 hours with us and was so patient with our little man.  This photo, the blog background and my profile photo are examples of the beautiful photographs she has taken of our son.  She has worked with preemies before and knows how to capture the excitement of parents bringing their son or daughter home after weeks or months of wait.  We are so glad that we got the photos because he is already so much bigger and it's hard to remember how small he once was.

Thanks Virginia @  www.sweetgingerphotography.com

2012 Sport Chek Mother's Day Run & Walk in support of NICU

Please participate by walking or running or sponsor someone you know.  Not only is it a fun and amazing event with thousands of people out for a good cause, but the proceeds for this event will go specifically to purchasing life-saving equipment for the NICU.

http://www.mdrunandwalk.com/index.php?option=com_content&view=article&id=26&Itemid=37

"It's okay to need support"

Within the first week of having my son, it sank in how different his arrival was from what most new mothers experience.  Worry and concern had firmly set in and I went back and forth between wanting to tell people how I felt to wanting to hide it so that people wouldn't think anything was wrong with him.  A friend of mine is an ob/gyn surgeon and because she worked at FMC she was one of the few people allowed to visit while I was in the hospital recovering from delivery. She said something that stuck with me in the first few weeks we were in the NICU, when we felt most afraid.  She said quite plainly, "it's okay to need support, that's all they're doing is giving him a little extra support until he catches up".

Several weeks later, another mom said something to me along the same vein.  This mother was in the NICU for the second time; she suffered from preeclampsia and had had spent more than 100 days in the NICU with her first child and was approaching 3 months with her second.  She explained to me that she recoiled every time someone suggested that her children were sick. In her eyes, they weren't sick they were just early and needed some time to develop before coming home.  

Over the next 7 weeks in the NICU I learned that there were so many people willing to help provide my son with that love and support.  The neonatologists, nurses, residents, dieticians, nurse practitioners, respiratory technicians, lactation consultants, unit clerks and other staff all played a role in supporting him as he fed and grew.  

No one wants their child to start off life as a sick child.  I realized that these two friends were right; the people around me took their cues on how to treat my son from how I viewed/described the situation.  From then on when people asked me how he was doing I answered that he was just a little tiny and early but doing well.  And he continues to do well - at 9 weeks adjusted he smiles, coos, lifts his head, holds our gaze and is an impressive 12 lbs.  All he really needed was a little love and support along the way.

Preterm Labour

I had a low risk pregnancy but went into labour spontaneously at 29 weeks, 4 days.  At the time I had no information about the complications associated with preterm labour and had no idea why it was happening and whether I had done anything to bring this upon myself.  I learned that there was not a lot I could have done to prevent it, and it wasn't my fault (though it took me awhile to let go of that guilty voice in my head).  I've been told by many other parents that this is just the beginning of the guilt I will feel at every turn as a parent!

The Society of Obstetricians and Gynaecologists of Canada is comprised of over 3000 professional members, including gynaecologists, obstetricians, family physicians, nurses, midwives and allied health professionals.  The following is an article on Preterm Labour found on the SOGC website at http://www.sogc.org/health/pregnancy-preterm_e.asp 

Preterm Labour

Not everyone understands how important it is to carry a baby to full term. Some women hope for a premature baby, thinking a small baby may be easier to deliver.

In fact, premature labour is one of the most common problems in pregnancy and it is the cause of 75 percent of all newborn deaths in babies born without birth defects. Premature babies are more delicate and can have lifelong problems related to their prematurity. In general, the more premature a baby is, the more severe the problems. Babies born before the 25th week usually do not survive without problems.

It is important to know early whether premature labour is occurring, as it sometimes can be stopped or delayed. This can provide time to give medicine that can help the baby, and to treat conditions causing premature labour.

What causes premature labour?

Why some women develop premature labour, and others don’t, is not well known. What we do know is that about half of all premature labours begin for unknown reasons to women whose pregnancies were otherwise normal. However, certain things seem to increase a woman’s chances of going into early labour.

What you do during your pregnancy can help you carry your baby longer, and give him a better start. Research has shown that the more women know about the signs and risks of premature labour, the lower the rate of premature births.

In France, one long-term study showed a large reduction in overall prematurity rate when the following steps were taken:

• There was public education about preterm labour and the importance of healthy full term babies to society as a whole.
• Special seats on buses and special parking places were set aside for pregnant women.
• Pregnant women were encouraged to keep their own pregnancy record.

These are some of the risk factors for premature labour, and how the risk can be reduced:

Smoking - It is best not to smoke during pregnancy. You can still benefit your baby if you quit smoking before you reach 32 weeks.

Working too hard - Working long hours, doing strenuous kinds of work and being tired all the time can lead to a preterm birth.

Physical and emotional abuse - When someone hurts you, they can also hurt your unborn baby. Even emotional abuse can lead to a preterm birth by significantly raising your stress levels. Please seek the help you need by calling a family crisis centre in your area.

Incompetent cervix – a rare condition in which the cervix dilates (opens) early and is associated with premature labour. This can sometimes be diagnosed during a vaginal examination or by measuring the size of the cervix during an ultrasound. Sometimes this can be treated by sewing the cervix closed with a “drawstring” stitch and removing the sutures when the baby is full term.

Fibroids in and/or on your uterus can cause it to be misshapen. If fibroids large enough to deform the uterus are detected before pregnancy, they may be removed. Small fibroids usually don’t cause problems during pregnancy.

Bleeding during second trimester - A small amount of bleeding can occur if the placenta begins to separate a bit from the lining of the uterus before labour starts. Each case of bleeding should be treated separately and may be treated differently depending on the cause. Always notify your health care provider about bleeding.

Abdominal surgery during pregnancy - Sometimes abdominal surgery is needed when a woman is pregnant (for example, for appendicitis). Surgery that is wanted but not essential (elective) should be avoided until after the baby is born.

Common infections in the mother are vaginal, cervical, kidney or bladder infections. You may have a bladder or kidney infection if you have pain when you urinate, if you have to go often, and when you do only a small amount of urine comes out. You may have an infection in your vagina or cervix if you notice an unusual vaginal discharge, have pain in your pelvis or groin area, or a fever. Notify your doctor.

An underweight mother - Treatment depends on the cause of the problem. Sometimes this problem is helped by eating healthy, good food on a regular basis. Talk to your health care provider if you are underweight and having problems.

Placenta previa – a condition in which the placenta implanted and grew over the opening of the cervix (where the baby must come out). This can lead to hemorrhaging during labour. This problem is usually found during routine ultrasound testing. The mother is often confined to bed for the last few weeks of pregnancy and the baby is usually delivered by caesarean section before labour has a chance to begin.

Premature rupture of membranes – the sac of amniotic fluid breaks or leaks before your baby reaches full term. Some studies link this to infections in the uterus, but further research needs to be done. If your membranes rupture early, treatment depends on how much amniotic fluid is lost and how close to your due date you are. Notify your doctor, or health care provider.

Gestational hypertension (high blood pressure caused by pregnancy) – is treatable in various ways depending on the severity.

Chronic illness in the mother. Some illnesses (diabetes, high blood pressure) may become out of control during the pregnancy, and in some situations the only way to stop the worsening condition is to deliver the baby. Sometimes the labour will begin too early on its own, and in other cases, the labour needs to be brought on (induced).

What you can do to prevent premature labour

There are other basic things which you can do in an effort to try to prevent your baby from being born too soon.

Quit smoking: Try to understand why you smoke, and seek help to learn other ways of dealing with these issues. Ask around in your community about “Quit Smoking” programs. Ask your doctor about programs to help you quit.

Eat properly: Talk to a registered dietitian about your eating habits. Plan your meals around the basic food groups and avoid junk food. Drink plenty of milk.

Get help if you need it: You have a right to feel safe. If you are being abused, call your local women's shelter and ask where you can go for help.

Get plenty of rest: Plan ahead to be sure a certain part of your day will be set aside for you to rest. Don't feel guilty for resting. It is very important during pregnancy.

Learn ways to reduce stress: Talk to people you trust about how you feel. Learn relaxation techniques such as meditation and self-massage to reduce your stress. Consider yoga.

Avoid strenuous work

Avoid overexertion when exercising during pregnancy: Even though you are physically fit, it is important not to increase your workout intensity during certain times of your pregnancy.

Learn to recognize the signs of premature labour: Prenatal classes through your hospital or community are an excellent way to learn. Talk to your doctor.

Learn the steps to take if you think you are in premature labour: Talk to your doctor about what you should do. Write down the phone numbers to call and what your doctor wants you to do if you go into premature labour

Visit your doctor regularly during pregnancy: This is one of the most important things you can do to prevent premature labour because it gives your doctor a chance to find or prevent problems, which may cause your baby to be born early.

Dairy-free Diet

On week 3 of his stay at the NICU, we went through a NEC scare and the doctors put me on a dairy-free diet. Like most people, I wrongly believed that my diet contained very little dairy but I hadn't counted on how many things contained soy which was also to be avoided.  I learned quickly to read food labels carefully and ask questions about ingredients when ordering in restaurants.

Here is a short list of obvious and not so obvious milk products:

Artificial butter flavor, Butter, Butter fat, Buttermilk, Butter oil, Casein,  Cheese, Cottage cheese, Cream, Curds, Custard, Ghee, Goat’s milk, Half & half, Hydrolysates (casein, milk protein, protein, whey, whey protein), Kefir, Koumiss, Lactalbumin, Lactalbumin phosphate, Lactoglobulin, Lactose, Lactulose, Milk, Nougat, Sour cream,  Sour milk solids, Whey, Yogurt

The following foods MAY contain milk protein:

Chocolate, Flavourings (natural or artificial), High protein flour, Hot Dogs, Deli Meat, Margarine, Sausage

It is important to check how foods have been prepared when you eat in restaurants.  Butter is used to add flavour to pretty much everything so you need to ask about how food has been prepared.  It is easy to ask that the chef uses oil instead.  Omelettes and scrambled eggs often have milk added so beware.

Our doctor advised us that goat and sheep milk should also be avoided as they contain proteins similar to cow's milk protein.  It is important to ensure you take adequate calcium supplements to avoid rickets for your baby and to protect your own calcium stores.  

The greatest problem came with trying to eat food "on the run". Here is a short list of dairy-free friendly restaurants.  Please add to the list if you can.

Coffee (with cream/milk alternatives)
Good Earth - almond milk
Beano - almond milk

Fish
Trawlers panfried

Chicken
Swiss Chalet chicken meal including dipping sauce

Bread
Lakeview Bakery Spelt bread

Charcuterie (bread & meats)
Charcut

While on this diet, it is very important to supplement calcium with 1000mg of calcium/magnesium.  It is not enough to rely on TUMS to supplement the missing dietary calcium.

Gift funds new neonatal beds at Children's Hospital

lhttp://www.cbc.ca/news/canada/calgary/story/2012/01/25/calgary-intensive-care-children.html

How much does your baby weigh?

People understand numbers, so it's not surprising that the first question my friends and colleagues asked was "how much does your son weigh?"... I dreaded that question.  No matter how many ounces he had gained, or how well he was feeding, people always seemed shocked when I answered the question.

He had hit a low of 2 lbs 11 oz when he battled an infection so on the day he hit 4 lbs I felt so much joy and happiness.  He had come so far and was finally gaining steadily.  On that day I left the NICU and decided to stop by work to catch up with my colleagues.  When the question came, I answered "4 lbs" with such pride.  Their reactions were uniform; they couldn't believe how small he was and how slowly (in their eyes) he was gaining weight.  In an instant all the happiness I felt was replaced with fear and worry and a bit of shame that I was having so many problems with being a mom.  It took me several months, almost the entire duration of his stay in the NICU to stop listening.  I stopped listening to the people who didn't know any better and sometimes didn't even answer the question directly but instead listed off all the progress my son had made and his accomplishments.  No one meant any harm they just did not appreciate the anxiety new parents of preemies go through when faced with that question.  I also learned to surround myself with supportive friends and family who did nothing but cheer on every day he was alive and every ounce my son gained.   Somehow they knew that's what we needed and gave me strength during such an overwhelming time.

Similarly, I now try not to give airtime in my head to comments by strangers who ask "how old is your baby" or who seem to dismiss the concept of adjusted age when I explain it to them.

To all of those special people in my life who love and support my little guy, thank you.    

Welcome from an NICU alum

I recently stumbled across a blog created for Sunnybrook NICU families and was inspired to create something similar for families with babies in any one of the Calgary NICUs.

It is hard to explain to someone the worries and challenges that parents of preemies encounter during their stays and after their escape from the NICU.  I found trying to obtain relevant information frustrating and  often spent hours on the internet searching for answers or anecdotal information after having spent very long days at my son's bedside.  It was a struggle to identify recent or local information and most websites were of little use.

During our time in the NICU (first at FMC, then at Rockyview), we learned that Calgary has the highest preterm delivery rates in the country.  This blog is intended to be a way for those many parents to support each other, share stories and exchange information.  I am hopeful that it makes the overwhelming process of having a preemie in a Calgary NICU a little less lonely.  Please post away!

Jacquie