I have been meaning to share this recipe for a while as my family loves them. I try to make them at least once a month, but I have started making bigger batches and freezing them (not quite as good, but pretty close).
These are relatively simple, but time consuming as you do have to cut out each animal cracker individually. I find that the dough is a tad bit sticky, so it takes a bit of work to get your extra flour for rolling and prevent sticking to your cookie cutters.
I use little cutouts that I got off of amazon that are actually meant for fruit, veggies and cookies. Super little and super cute. You can use whatever shapes you want, I love making them in shapes my daughter recognizes like bunny ears or fish etc, but circles work just as good. I like them small as they are great for little fingers (a little bit bigger than my thumbnail is my go to).
I have used several different flour mixes and I have found the one on the link the best: Gluten Free Baking Mix.
Gluten Free Vegan Animal Crackers
Servings: 200 small crackers, 90 standard animal crackers
Ingredients 1 1/3 C Gluten Free Baking Mix flour 1/8 tsp baking soda (1) 1/4 tsp salt (2) Pinch of nutmeg 1/4 C vegan butter, room temp. (I use miyokos butter) (3) 3 Tbsp unsweetened applesauce, room temp. 1/3 C cane sugar 1 Tbsp flaxseed meal + 2 Tbsp warm water (thickened for 5 minutes) (I use golden flaxseed meal so it isn’t visible in my baking) 1/2 tsp vanilla extract (4) 3/8 tsp apple cider vinegar (ACV) or lemon juice (1)
Directions 1. In a small bowl whisk together the dry ingredients (flour, baking soda, salt, nutmeg), set aside. 2. In a large bowl vigorously whip the butter with the back of your fork until fluffy (2 minutes). Add the applesauce and sugar. Fluff until well mixed (another minute). Add the flax “egg”, vanilla and apple cider vinegar/lemon juice and whisk until blended in. 3. Add the dry ingredients slowly into the wet ingredients as you stir to make a nice cookie dough 4. Divide into 3 balls and chill in the fridge for at least 1 hour (I wrap each ball individually in saran wrap to prevent drying out). 5. Preheat oven to 350 degrees. Line baking sheet with parchment paper 6. Between 2 pieces of parchment paper, roll out one ball of dough until 1/4″ thick. Using mini animal cookie cutters cut out your cookies. 7. Carefully transfer to the baking sheet and bake for 8-10 minutes, just until the edges begin to lightly brown. 8. Allow to cool on a wire rack, enjoy. Will store in an airtight container for up to 1 week on the counter. Freeze in airtight container for longer lasting crackers, take out prior to enjoying.
Notes (1) Baking soda & apple cider vinegar: This is a substitute for 1/2 tsp baking powder. Corn & Grape Allergy – Baking powder is not corn free. Find corn-free if need be. Cream of tartar is made from grapes, if you have a grape allergy; you just need 1/4 of powder for baking soda and remainder in apple cider vinegar (2) Salt: Corn Allergy – Many that are allergic to corn are sensitive to iodized salt as corn is used in the processing. Sea salt is better, but some are still quite sensitive. (3) Butter: Dairy & Corn Allergy – Depending on allergies use whatever butter you need. There are several options: MELT, Earth Balance, Miyoko’s, coconut oil, goat butter). Beware of salt in butter if corn allergic (look for sea salt/unsalted). Many of vegan butter have corn derivatives. (4) Vanilla: Corn Allergy – Vanilla is made with alcohol, often corn, you may need to make your own
The last day in February is Rare Disease Day, a day to bring awareness to the general public about rare diseases affecting many people’s lives. What I didn’t know until we had V and researched Rare Disease Day, is that 1/20 people will live with a rare disease at some point in their life.
Despite how many are affected, most of these diseases actually have a small group affecting each specific disease, having no cure and most of the time actually go undiagnosed. We celebrate rare disease day on the last day in February, a month with a rare number of days.
So what is a rare disease?
“There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world, each supported by family, friends and a team of carers that make up the rare disease community. Each rare disease may only affect a handful of people, scattered around the world, but taken together the number of people directly affected is equivalent to the population of the world’s third largest country. Rare diseases currently affect 3.5% – 5.9% of the worldwide population. 70% of those genetic rare diseases start in childhood. 72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.” (1)
What are the challenges with a rare disease?
Due to such a lack in scientific knowledge and quality information of each disease there are often delays in getting a correct diagnosis. The lack of information also delays appropriate interventions and treatment, causing additional burdens on those affected. Due to the rarity and diversity within each disease, it is so important for research done to be international so that all researchers, experts and clinicians are connected and able to collaborate more effectively and efficiently. There are several initiatives, including the International Rare Disease Consortium, the European Reference Network, Care 4 Rare (this is a Canadian run program), and EU Framework Programme for Research and Innovation Horizon 2020, that support international, collaborative work.
How will Rare Disease Day help make a difference?
Rare disease day helps to bring awareness to the 300 million people living with a rare disease around the world, and other loved ones affected as well.
“The long-term cause of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease.”(1)
At the start of Rare Disease Day in 2008, 18 countries held events, and in 2019 over 100 countries brought awareness to rare diseases by holding events. This is exciting progress.
So how does this affect our family?
As mentioned in a previous post The terrors of being a NICU parent, our daughter was diagnosed with Incontinentia Pigmenti, a rare congenital condition that affects her X chromosomes. This in turn affects her skin, hair, teeth, microvasculature (including her eyes), and central nervous system. What I haven’t mentioned is that only 1200 people with this condition have been reported in scientific literature. Current prevalence being 0.6-2.1/1,000,000 persons, which is a 0.00006%-0.00021% of the population on earth. (2)
At 6 months of age V was also diagnosed with a rare allergy condition called FPIES (food protein induced enterocolitis syndrome). It is a non-IgE allergy affecting her gastrointestinal system. It causes vomiting to the risk of hypovolemic shock, abdominal pain, and bleeding with diarrhea. Most outgrow this condition by the age of 3, however a small number live with this allergy for life. From numbers I could find, FPIES is estimated to affect 0.28% of children in the United States currently. Due to frequent misdiagnosis this number is likely low. (3)
Living with a Rare Disease
Living with a rare disease has so many complicated facets. Not only is there little information out there, many doctors don’t know or understand the condition. I go to our family doctor and tell her what I want/need, not the other way around. She actually told me the last time I was in that I am the expert, not her. What is scary about this, is what if a doctor doesn’t agree with what my daughter needs? What if we go to the emergency room needing specific care and they don’t agree with what she needs and ignore our concerns? Things can go from scary to downright dangerous.
Support groups are our life. I have so many support groups, yes on facebook, but they have made our life so much simpler and safer. There is so much information each of us as parents have researched and discovered, so why not share? Obviously it is important to trust your source and do research as necessary to confirm what was stated or suggested, but I have learned so much about new updated protocols to follow, food suggestions and tips on dealing with IP and FPIES in the hospital setting. Due to all of this advice, we were safely able to navigate surgery for V this past January, you can read about it here. These support groups also are so important for ones mental health. It is easier to shelter yourself and your child when someone in your family is affected by a rare disease or allergy. It is easy to just stay home than to go out, risking your child, worrying about an innumerable amount of risks, trying to explain yourself and your child numerous times. It is so much simpler to shelter oneself. I have found support, people I can vent to, people that understand. It also makes it easier to go out because of advice given.
For many with a rare disease, or really any disease, life is more expensive. We celebrate daily that we live in Canada, where most of our medical expenses are covered by the health care system. Unfortunately this isn’t the case for many across the world. Sadly, our health care does not include FPIES or any allergies under a tax exemption for food expenses. Depending on severity of a condition, it can become very expensive to support the one in your life with said restriction. For us, corn is debilitating. Everything we eat needs to be locally sourced from specific farmers, with specific farming practices. This includes butchering practice and packaging of all food products. Suffice to say, it puts a strain on ones budget.
There are of course the struggles if ones family is not supportive and you have not only no help, but judgement too. Judgement as to treatment options, lifestyle changes, things they can do to help etc.
For many with a rare disease they are undergoing medical treatment that is new, joining medical trials, trying medication after medication. There is often no end to the disease and the start of ones day. So how do you live with a disease and not let it define your life? For everyone that looks so different.
For our family, it means trying to make meals as normal as possible, even if our ingredients are limited. It also means scheduling doctor appointments around our life, rather life around the doctor appointments. We bring food with us to go out instead of just staying home as we can’t eat out. Some struggles we haven’t come across yet, like how we will approach dangerous sports (increased risk for retinal detachment) or for V later in making decisions about having a family (as IP is hereditary and often causes miscarriages).
I encourage you all to read up about a loved ones disease, rare or not, and know how you can support them. Whether they are in need of financial support for programs, help with just staying on top of their house (due to an even busier schedule than most) or even just taking them out for coffee and listening. Trust me, when loved ones research and are able to participate in a conversation about the condition, bring forward suggestions or ideas and overall just are there, it means a lot!
Baking Powder Corn & Grape Allergy – Baking powder is not corn free. Find corn-free if need be. Cream of tartar is made from grapes, if you have a grape allergy; you just need 1/4 of powder for baking soda and remainder in apple cider vinegar
Brown Sugar Corn Allergy – depending on sensitivity, you may need cane brown sugar. We use Cuisine Camino.
Butter Dairy & Corn Allergy – Depending on allergies use whatever butter you need. There are several options: MELT, Earth Balance, Miyoko’s, coconut oil, goat butter). Beware of salt in butter if corn allergic (look for sea salt/unsalted). Many of vegan butter have corn derivatives.
Canned tomatoes Corn Allergy – Ensure that the cans are free of citric acid if you are corn free. We decided to can tomatoes this summer instead of buying store bought.
Chocolate Chips Corn Allergy – During the dutching process to create cocoa, it is treated with ph balancing agents, derived from corn. It is difficult to find safe cocoa or chocolate chips. A couple of corn lite options: Cuisine Camino, Equal Exchange.
Coconut Milk Cornallergy – ensure coconut milk is gum free
Egg Replacer Corn allergy – I have found that many of the egg replacers out there use corn starch, so beware which one you buy. Bob’s Red Mill works as a great replacer, however it has a lot of cross contamination and isn’t recommended at all with corn allergies. You could also use a flax egg as an alternative.
Gelatin Corn allergy – gelatin needs to be unflavoured and not made from vegetables to truly be corn free. I use a beef gelatin.
Grease Corn & Soy Allergy – PAM is full of contaminated corn oils and soy oil. I use safe oil & grease with my hands. You can buy oil mister bottles and fill with your own safe oil as well. I don’t line my muffin pans as it isn’t needed. They hold well on their own, and often they are too greasy to stick anyways.
Powdered sugar Corn Allergy – Powdered sugar/icing sugar contains cornstarch to prevent clumping. Wholesome Organic Icing Sugar uses tapioca starch instead. This is an ok option for corn lite, but trial carefully as there is a lot of cross contamination. It is possible to make your own. This is what we do, it is just time consuming.
Salt Corn Allergy – Many that are allergic to corn are sensitive to iodized salt as corn is used in the processing. Sea salt is better, but some are still quite sensitive.
Vanilla Corn Allergy – Vanilla is made with alcohol, often corn, you may need to make your own
Vinegar Corn Allergy – it is important to avoid white vinegar; any safe vinegar will work including rice vinegar, apple cider vinegar, or coconut vinegar
Vegetable oil Corn Allergy – Don’t use “vegetable oil” as it can be corn or soy oil. Canola oil is one of the worst oils for cross contamination with corn. I usually use grapeseed oil. Olive oil isn’t always 100% olive oil either, so if you are sensitive, be careful.
Whipping Cream Corn Allergy – When looking at canned coconut milk or cream be sure to check for gums. The one I buy is gum free as corn is used to make almost all the “gum” ingredients
Xanthan Gum Corn Allergy – xanthan gum is iffy with corn allergies due to how they make it. We made the switch to psyllium husk fibre in our house.
Yeast Corn allergy – avoid all yeast that contains any additives, most contain ascorbic acid, which is derived from corn. Red Star Active Dry Yeast is the only one I believe that is free of any additives, it has to be the individual single dose packages.
If you are anything like me, you have bags of frozen fruit in the freezer, just waiting to be put into something delicious. I love to stock up on fruit in the summer from local farmers. Raspberries, blueberries, sliced apples, peaches (whole and sliced), plums, currants and much more.
So what do I do with all those bags of fruit? Last week I posted about Apple Crumble and I use those sliced apples in it regularly. My Banana chocolate chip muffins are moist and delicious, usually using frozen bananas.
We just started trialing blueberries with our daughter this week and I figured, what better way to trial than to make some muffins. This recipe is super simple, quick and absolutely delicious. They even taste great after frozen! They are so good I forgot to take a picture before I froze them lol.
Servings: 8 large, big topped muffins / 10 standard muffins / 20-22 mini muffins
Ingredients 1 1/2 C flour or flour substitute (I use my Gluten Free All Purpose Flour) 3/4 C cane sugar plus 1 T for muffin tops 1/4 tsp sea salt (1) 2 tsp baking powder (or 1/2 tsp baking soda and 1 1/2 tsp apple cider vinegar) (2) 1/3 oil (olive, grapeseed, avocado etc.) (3) 1 egg or egg replacer (1 T flax seed meal and 2 T warm water) (4) 1/3 – 1/2 C milk or milk alternative 1 1/2 tsp vanilla extract (5) 6 – 8 oz fresh or frozen blueberries (about 1 C)
Directions 1. Preheat oven to 400F. Prepare muffin tins; I grease my pans, but you can also use paper cups. (6) 2. Whisk the flour, sugar, baking powder and salt in a large bowl. 3. Add oil to a measuring cup that holds at least 1 cup. Add the egg, then fill the jug to the 1 C line with milk. Add vanilla. Whisk to combine. 4. Add milk mixture to the bowl with dry ingredients, using a fork to combine. Don’t over mix. The batter is quite thick. Fold in the blueberries 5. Scoop the batter into your pans. I use my large trigger release ice cream scoop. Sprinkle a little sugar on top of each muffin (optional). 6. Bake for 15-20 minutes and tops golden or until toothpick comes out with crumbs, not wet batter. (Mini muffins bake for 9-11 minutes). Transfer to cooling rack. Place in airtight container and store at room temperature for 2-3 days or in the freezer for up to 3 months.
Notes (1) Salt: Corn Allergy – Many that are allergic to corn are sensitive to iodized salt as corn is used in the processing. Sea salt is better, but some are still quite sensitive. (2) Baking Powder: Corn & Grape Allergy – Baking powder is not corn free. Find corn-free if need be. Cream of tartar is made from grapes, if you have a grape allergy; you just need 1/4 of powder for baking soda and remainder in apple cider vinegar (3) Oil: Corn Allergy – Don’t use “vegetable oil” as it can be corn or soy oil. Canola oil is one of the worst oils for cross contamination with corn. I usually use grapeseed oil. Olive oil isn’t always 100% olive oil either, so if you are sensitive, be careful. (4) Egg Replacer: Corn allergy – I have found that many of the egg replacers out there use corn starch, so beware which one you buy. Bob’s Red Mill works as a great replacer, however it has a lot of cross contamination and isn’t recommended at all with corn allergies. You could also use a flax egg as an alternative. (5) Vanilla: Corn Allergy – Vanilla is made with alcohol, often corn, you may need to make your own (6) Grease: Corn & Soy Allergy – PAM is full of contaminated corn oils and soy oil. I use safe oil & grease with my hands. You can buy oil mister bottles and fill with your own safe oil as well.
Anyone been craving apple crumble lately? This recipe is so delicious! I have made it around 6 times… In the last 2 months lol. And I’m the only one who eats it in my house due to a stubborn husband who doesn’t like fruit. More for me!
Ingredients Apple Filling 2 lb Granny Smith Apples, weight before peeling 1 Tbsp white flour (I use my Gluten Free All Purpose Flour) 1/2 C cane sugar 2 Tbsp lemon juice or water 1/2 tsp ground cinnamon
Topping 1 C rolled oats 1 C white flour (I use my Gluten Free All Purpose Flour) 1/2 – 1 C brown sugar (loosely packed) (1) 1/2 tsp baking powder 1 tsp ground cinnamon 3/4 C unsalted butter, melted (2) Pinch of salt (3)
Directions 1. Preheat oven to 350F 2. Peel apples, cut into 16 slices each apple (I use my apple peeler, corer, slicer) 3. Mix the apple, flour, sugar and cinnamon in a bowl, then pour over the lemon juice. Toss. Spread out evenly into a 9×9 baking dish. If I have extra apple I put into a 3×5 mini baking dish and make a 1-2 serving for later (I freeze it) 4. Place topping ingredients in a bowl and mix until clumps form, like wet sand. Depending on how sweet you like it, change the amount of sugar you add. I like it with 1/2 C of sugar. Spread over apples, crumbling with fingers as required. 5. Bake 30-40 minutes or until golden brown. Remove, loosely cover with foil to keep warm. Let sit for 10 minutes before serving.
Notes (1) Corn Allergy – depending on sensitivity, you may need cane sugar. We use Cuisine Camino. (2) Dairy & Corn Allergy – Depending on allergies use whatever butter you need. There are several options: MELT, Earth Balance, Miyoko’s, coconut oil, goat butter). Beware of salt in butter if corn allergic (look for sea salt/unsalted). Many of vegan butter have corn derivatives. (3) Corn Allergy – Many that are allergic to corn are sensitive to iodized salt as corn is used in the processing. Sea salt is better, but some are still quite sensitive. We use Maison Orphee.
I hope you can enjoy this recipe as much as we do in our house. It has become a staple for visitors. Quick, easy and delicious.
I don’t know about you, but I am the type of person who needs to know the pros and cons, and all the potential side effects and worst case scenarios. It helps me to just feel prepared for anything.
This actually really seems to bother my husband sometimes as he feels I am dwelling on the worst case, fearing the worst for no reason. I don’t know how to fully explain it but for me, I’d rather be prepared for the worst and get to celebrate the best than be so unprepared that I didn’t see the situation coming.
So why am I sharing this? We drove this week to the BC Children’s Hospital to see several specialist involved in V’s care for her genetic condition. This involved meeting an ophthalmologist surgeon who performed surgery on Thursday. We also met with a neurologist to confirm sure isn’t having any neurological complications of her vision and had an EEG to confirm and a requisition for an MRI to get a baseline of her central nervous system.
We have 10 doctors who are involved in V’s medical care, most of which have been supportive and helpful. Most of our appointments have been the perfect example of a supportive medical team.
But that isn’t always the case. We are so blessed to have such an amazing team. This week, meeting the two new specialists, as well as everyone involved in her care in the hospital during her surgery, including anesthetists, medical residents, and nurses to name a few, was nerve wracking. What if they aren’t supportive in our struggle with her uncommon allergies, what if they won’t listen to our requests for specific meds, for the necessity in certain IV fluids, food etc.
For anyone that wants to know about corn allergies and what hospital treatment and care looks like check out the following links:
So how did we prepare for surgery for our little girl? For starters, we have a “care plan” for lack of a better word made up for her. This includes her daily routine (which is helpful if we have people watching her), emergency numbers, medical conditions, allergies, including her safe foods that she can eat and where we buy them, the emergency room protocol for corn allergies, what to do in case of an anaphylactic reaction or a FPIES reaction, and information on her genetic condition, IP.
We also brought copies of the protocol to give to the anaesthetist and doctors, including a list of safe and unsafe things for her. This included medications, IV fluids and other practices.
Obviously not everyone needs to have all of this if your kid doesn’t have allergies affected by hospital care. So what can everyone else do to prepare?
We always prepare before any appointments by writing down concerns we have, things we have questions about, and ask about potential complications with any procedure that needs to occur. We talk about in emergency situations what steps would be taken or how long a procedure would take and what recovery will look like.
Often times doctors have done a procedure so many times that they forget that us as parents or patients are worried or don’t fully understand exactly what they are going to do. Don’t be scared to stop them from leaving, ask more questions, ensure that you feel comfortable with everything that is going to happen.
One thing I haven’t mentioned yet is surgery start times and fasting. When your kid doesn’t understand why you aren’t giving them food when they keep asking for it, it is so difficult. Thank goodness V was able to be distracted by a walk, playing with toys in the waiting room, more walking, and watching a little TV. If that didn’t work, I don’t know how we would have made it so long. She was starved.
I always hoped and prayed that I wouldn’t have to experience the fear of walking away while my child was put to sleep with anaesthetic for a surgery. It is a scary thing. We talked about who would go in with V to hold her while they put the mask on and put her to sleep with the medication. That was a hard decision for me. Do I want to be there while she is terrified and then walk away with her unconcious?
So what do you do while you wait? Well I wanted to keep my mind busy, so we actually went and ate our packed lunch. We were a couple floors down and I knew they had our number. I needed to be distracted. Obviously not everyone can eat when their little one is in surgery, so what else can you do?
We packed a couple small card games to play and our books to read. And obviously we had our phones as well. V’s surgery was only 45 minutes, so we had no issue filling that time. Just do whatever you need to do. If you need to leave the ward or if you can’t leave just in case, those are both ok.
If you bawl your eyes out the whole time or never shed a tear, you are an amazing parent. It isn’t easy having your precious child in surgery, whether it is major surgery or something simple, it’s scary. Feel what you need to feel and don’t feel embarrassed.
Getting to see V after surgery was so heartening and heartbreaking. Be warned that it may take a while for them to feel ok, to settle in. It took V about 30 minutes to calm down and feel better. I’m going to be honest, I am so thankful we are still breastfeeding as it was such a simple, easy way to help her stay calm and feel safe.
So what am I trying to say with all of this? Maybe just that surgery is terrifying and it’s ok to be worried sick. Do your research, find all your answers before hand, and know that those doctors only want what is best for your little one.
Anyone else have a hankering for banana chocolate chip muffins lately? This is my go to breakfast/snack. I always have premade muffins in the freezer and several in a container on the counter at all times.
I love banana muffins as you can use up those older bananas that you don’t really feel like eating anymore. I usually throw them into the freezer until I have enough to make a double recipe.
Ingredients 4 ripe bananas, medium or 1 1/3 C mashed banana 1/3 C melted butter/vegan butter, cooled (I use miyokos) (1) 2/3 C cane sugar 1 egg/egg replacer 1 tsp vanilla (2) 1 tsp baking soda Pinch of sea salt (3) 1 1/2 C all purpose flour/GF flour (I use Gluten Free All Purpose Flour) 1 C chocolate chips (I use Cuisine Camino Semi-Sweet Chocolate Chips) (4)
Instructions 1. Preheat oven to 350 F 2. Grease your muffin tins (5) 3. Peel bananas and throw them in a big bowl with melted butter and smash it all together with a fork or potato masher 4. Blend until it is creamy and smooth with no chunks 5. Add sugar, egg, and vanilla and mix until just combined 6. Stir in sea salt and baking soda 7. Add flour and chocolate chips and mix until just combined. Do not overmix! 8. Divide into muffin tins & bake until toothpick pulls out cleanly, about 18-20 minutes.
Notes (1) Dairy & Corn Allergy – Depending on allergies use whatever butter you need. There are several options: MELT, Earth Balance, Miyoko’s, coconut oil, goat butter). Beware of salt in butter if corn allergic (look for sea salt/unsalted). Many of vegan butter have corn derivatives. (2) Corn Allergy – Vanilla is made with alcohol, often corn, you may need to make your own (3) Corn Allergy – Many that are allergic to corn are sensitive to iodized salt as corn is used in the processing. Sea salt is better, but some are still quite sensitive. (4) Corn Allergy – During the dutching process to create cocoa, it is treated with ph balancing agents, derived from corn. It is difficult to find safe cocoa or chocolate chips. A couple of corn lite options: Cuisine Camino, Equal Exchange. (5) Corn & Soy Allergy – PAM is full of contaminated corn oils and soy oil. I use safe oil & grease with my hands. You can buy oil mister bottles and fill with your own safe oil as well. I don’t line my muffin pans as it isn’t needed. They hold well on their own, and often they are too greasy to stick anyways.
I’m laying here, trying to relax because I have to get up tomorrow before 5 am for my first work shift since my little girl was born.
I spent the evening panicking. The house is a disaster. I had no food in the fridge for supper let alone meals for tomorrow for me, hubby and little V, as well as grandparents who will be watching her.
I’m worried about all of her allergies, what if she has a reaction and I’m not there, what if , what if, what if. All I can do is give all the information to those watching her and pray that they will watch her like I do. I seriously don’t know how allergy mom’s cope.
I’m still a breastfeeding mom, so what will pumping look like, especially as a nurse. Will I find time to pump? Will my co-workers be ok with me leaving the floor to pump? Will V take to the bottle ok? Will I start to hate pumping and quit breastfeeding because of it?
So many thoughts and issues arise when returning to work, especially after being off for a year! I’m utterly terrified to start a new job with new co-workers especially since it has been over a year!
I don’t feel ready to return to work. Will I ever?
It’s so easy to wallow in the guilt of returning to work. Am I making the right decision? Should I just stay home forever? Will I negatively be affecting my children by working? I have absolutely loved being a stay at home mom for the past year. I feel so blessed to live in Canada where this is an option, to stay home for 12 – 18 months after having a newborn.
For moms putting their littles in daycare, I can’t even imagine. For someone you may not know well to watch your kids day in and day out, feeling like you don’t get to see all these new changes that are happening. Wow. You are so strong to do what you need for your family!
We are blessed with me being a nurse and being able to have the option of just working casually, so V going into daycare just didn’t make sense for our family. What that does mean though is worrying about who will watch V, whether grandparents can come, or if J will stay home from work that day and “work from home” (not sure how effective he will be lol).
I keep trying to remind myself that it is like any other day that her grandparents have watched her. Like any other day. Like any other day. It’s on repeat in my head but it doesn’t seem to be getting any easier.
I keep reminding myself she will be safe, she is loved, she won’t remember all these days I didn’t see her at all due to 12 hour shifts. I keep reminding myself that it’s ok to miss her little arms around me, or to look at photos during the day and want to bawl. I keep telling myself it’ll get easier as time goes on.
It is ok to work, it is ok to have a life apart from your kids. Healthy even. I have been dreading/dreaming of the day I get to return to work, and have a purpose other than keeping my child alive and loved.
Is it going to be difficult, heck yes. Is it ok to bawl and miss them, 100%. Is it ok to look forwards to leaving the house, for adult interaction, totally. Is it ok to blame yourself or doubt your love for your kids because you are a working mom, absolutely not.
Whatever you have to do for your family, whether that means working casually, part time, full time. Whether you have family watching your kids or they have a nanny or are in day care. Just know, you are doing what you need to, in the now, to raise and protect them. Just continue to show your children how much you love them, and enjoy every moment you have together as a family.
That is what I am trying to do, live in the now. Will I cry tomorrow, an absolute guarantee. Will it be hard to not see my precious daughter, totally. Does it suck being a pumping mom, totally! But we do what we gotta do.
Don’t let that mom guilt bring you down. Revel in the moment with your family ❤️ that’s what I am doing.
Every new parent’s nightmare is that something is wrong with their child. Of course for most people this fear never comes to pass and you get to take home a health little baby.
As most of you know, our daughter V has quite a bit going on medically, mostly due to a genetic condition she was born with called Incontinentia Pigmenti.
The month of October is Incontinentia Pigmenti awareness month and I would really like to share our story, however, I have to start at the beginning, which means sharing about being NICU parents.
After 10 days of prelabour, 12 hours of active labour, issues with monitors picking up heartbeats and the use of a vacuum to assist in delivery, our beautiful baby girl was born; this was last October and everything about her was perfect. The only thing that the pediatrician was slightly concerned with was she had some blisters on her left forearm, she thought they were suckling blisters from in utero and just asked to keep an eye on them.
We waited the 48 hours for discharge as I had group B strep and they wanted to monitor her. Everything looked perfect. Blood work was normal, she was healthy, was latching and eating well, good diaper output, hearing was great, everything was fine. We were getting ready to go on the morning of day 2 after her birth when I noticed her blisters on her left forearm had spread to her left inner thigh. I mentioned this to the nurse who was prepping her first bath. The nurse didn’t seem concerned, just went to tell the doctor.
Suddenly the pediatrician is there saying she wanted to bring our daughter into the NICU for some quick checks to make sure it wasn’t serious.
I remember walking with them into the NICU thinking “this can’t be real, my baby girl is healthy, nothing is wrong.” They immediately started an IV and had her under big lights. There were monitoring cords everywhere and all I could think was “she looks so tiny, don’t let anything happen to my baby!”
They explained that they were concerned that she may have Herpes Simplex Virus (HSV), and that they were going to need to do a Lumbar Puncture (LP) as well as gather skin samples to send off for testing. They politely asked us to leave while they performed the procedure. My husband and I had to walk out of the NICU utterly terrified and praying for a miracle, trusting the doctors and nurses to take care of our newborn baby.
That was likely the most scared I have been in my entire life. Pacing in our hospital room, waiting. My parents arrived, thinking they were going to help us pack up and go home and the moment I saw my mom I just started bawling. How do you explain when you don’t even know what is going on, when you don’t even know if your baby is okay?
After over an hour we finally got back into the NICU. Not only did they fail to get the LP, they tried twice and failed both times. As you can imagine it is hard to hit the right spot on such a tiny little spine. We were transferred to an isolation room as HSV is contagious and obviously don’t want any other babies catching it as it can be life-threatening in newborns as it can cause encephalitis.
That room is where we stayed for the next 8 days. It had no windows. It had a pull out couch bed thing not really fit for one person, let alone two. We were told only I could sleep there, but after the first night a nice nurse said we both could stay if we wanted (ummm, YES). There were cords all connected to our little girl monitoring her HR, oxygen saturation, respiratory rate, and blood pressure at all times. I was able to disconnect the cords to breastfeed or hold her, thank goodness, but she also had an IV running at all times. She got 4 different medications throughout the day and night through her IV: antibiotics and antiretrovirals. She got assessed every 4 hours by the nurses, which included a temperature check which she HATED. She had many blood draws done for blood tests, I honestly lost count of how many times she got poked.
It was impossible to clothe her as it pulled on her IV (which we tried to avoid as they kept pulling out). You had to bring the IV pole everywhere and man did that get irritating, which is small in the grand scheme of things, but it was so frustrating.
The worst part was that we didn’t know anything and her blisters kept getting worse. They were spreading over her entire body and the medical team didn’t have any answers. She had 3 LPs in total, 4 different IVs, dozens of blood draws. We saw 6 different pediatricians, 1 neonatologist, a dozen nurses, and 3 midwives (checking up on me).
Unfortunately James had to work because he had projects that were overdue. He stayed as much as possible and tried to be as present as possible. His co-workers were amazing and even sent him back to the hospital told him who cares about the clients. Spend time with your family.
The first night that we stayed in the NICU, where we were told only 1 guest per patient, I felt so completely alone and terrified. I just kept staring at my little girl in her crib, with monitors beeping and just bawled. I just wanted to hold her and make everything better. I wanted James to be there because all I needed was a hug and to be told that everything was going to be alright.
We kept asking about timeline, when will we get answers, and at first it was soon, then in a couple days, and then we were told 2 weeks, which changed back to a couple days, and so on and so forth. We were beyond frustrated. We wanted answers. What was going on with our daughter and how could we help her?
One thing I have respect for now, as a Licensed Practical Nurse myself, is how long a day takes as a patient. When you live in a moderate size city and are conferring with specialists hours away, replies take forever and you are just sitting there waiting for answers.
Once we were thinking it may no longer be HSV due to negative tests, then it was looking at what it could be. After hearing back from Infectious Diseases they said, “Definitely HSV, follow this treatment plan.” The same day dermatology responded with, “Likely not HSV, perhaps Incontinentia Pigmenti, especially if family history indicative.”
So of course I was grilled about any maternal medical conditions: alopecia, odd shaped teeth, dark swirly skin, pale skin patches, miscarriages of primarily male children. Nothing made sense. What did this have to do with anything? No. We didn’t have any of those conditions.
The next day we hear from Infectious Diseases again, “Stop antiretroviral treatment immediately. Definitely not HSV as per dermatologist. Follow up with dermatology.” Wait, WHAT! So because of one email from dermatology you are changing your stance from 100% one thing to 100% something else. Our child’s life is in your hands! Stopping treatment early could cause irreversible/life threatening damages if wrong.
We couldn’t take that chance, that they may be wrong. So we decided to wait for the second batch of special testing to come back from the lab 4 hours away. Confirmed a second time, not HSV. So what did this mean now?
This meant a whole new bout of specialists. We got an echocardiogram done, saw a pediatric ophthalmologist and got an in depth eye examination, got referrals to see the dermatologist, geneticist and genetic counselor. Finally we were sent home to wait and hope that we would get answers soon.
Our journey in the NICU was terrifying for me as a parent. It’s the last place you ever want to be with your newborn baby. I struggled with inadequacy; did I do something wrong, why is God letting this happen to us? I couldn’t do anything for her to make her better and she just kept getting worse. We had no idea if she was in pain. We just knew we loved her and would do anything for her.
I know that we were so blessed to have a baby that was quite stable while in the NICU. I can’t imagine the terror of watching major interventions be performed on your little one.
All this to say, everyone’s experience in the NICU is so incredibly difficult and challenging. For those that have children at home, to be torn between who you stay and take care of must be extremely difficult! For those who’s significant others can’t stay with you and be your support, or those that don’t have visitors who can come and lift you up, it can be so draining and lonely!
I want to give a shout out to all the doctors who did their best for our daughter, for the nurses who went above and beyond, breaking a few rules for us to make our stay as comfortable as possible, thank you from the bottom of my heart. We were in the NICU over Halloween and we got given a little handmade Superman cape, which of course we declared was a Supergirl cape. We have 2 special homemade quilts from the NICU as well that holds a special place in our hearts.
Our little V was our Super Girl. She was so strong, definitely stronger than me. She didn’t have any issues with IVs or blood draws. She rarely cried and honestly was way too content considering we were closeted in about 100 sq feet of space for over a week. She was an absolute trooper and I feel so incredibly blessed to call her my daughter.
To all those NICU parents, I know how difficult your journey is. It is terrifying. Even now, thinking back I start to bawl and feel almost panicked. You are so incredibly strong. It is not easy, but know you are not alone. ❤️