How do you prepare for your child’s surgery?

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:

Emergency Room Protocol

Hospital and Medical Safety with Corn Allergy

ER Safety: Emergency Medical Treatment with a Corn Allergy

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.

When maternity leave ends

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.

Allergies and Mental Health

Did you know that people can get PTSD due to allergic reactions?

Did you know that young kids with allergies often REFUSE to eat new foods for fear of an allergic reaction causing the to become picky eaters and at a risk for malnutrition?

So this post is for all those that have stood in the grocery store and sobbed because you can’t find anything for your family to eat that is safe.

For those that are stressed about money because your grocery bill skyrocketed since allergies were diagnosed.

For those that feel like you never leave the kitchen because you have to make everything from scratch to ensure it is safe for your family.

For those that stay at home instead of going out for dinner at a restaurant, because the thought of eating there or having your kid eat there and react makes you have a panic attack.

For those that stress every time their kid is playing anywhere that isn’t at home, wondering if someone ate something recently that your kid is allergic to…what did they touch? Will you be judged for wiping down everything in the area? What is too much? And then wondering if it might better to just stay home.

For those who decline invites to friends houses because you don’t know how well they clean and you don’t want to offend them by requesting they clean everything first.

For those who want to get frustrated with toddlers who aren’t eating in a high chair and are running/crawling around with their food; everything they are touching is now contaminated and a risk for your child or you. (Trust me I’ve been guilty of this too).

For those who try to act all cool in public but inside you are panicking about everything.

For those that carry an epi pen at all times because you never know when you might need it and the thought of being without causes you to break out in sweats.

For those who panic about trying new foods or starting new trials for ingredients, unsure what the reaction will be.

For those who constantly run through what to do for an anaphylactic response because you are worried you will miss something important.

For those that hear an ambulance and cringe inside, having flashbacks and reliving of previous reactions and the terror it causes.

For those that second guess everything, wondering if something could be related to an allergic reaction or if it’s in your head. Is that a rash, hives, a bug bite or a scrape?

For those that can’t go out in public without wearing an N99 mask because you are airborne reactive to many foods.

For those that are harassed at work or disrespected due to allergies meaning you no longer have a safe work environment.

For those who have to pay an arm and a leg to get medications compounded specially so that they are safe for you to take.

For those that are told that your baby can’t react to food through your breastmilk, to just eat whatever you want but your baby is in pain and screaming, so what else could it be.

To those who religiously check ingredients and stress about what’s in their food.

To those who have misread, or don’t reread a label and have such guilt for feeding their child something that could have killed them.

For those who have nightmares of accidentally killing their child by improperly checking ingredients.

For those that have family that doesn’t respect your boundaries you have put up to protect you or your family and put you at risk, causing you to feel unheard, alone and always in fear.

For those that don’t have a supportive spouse or significant other, to not have someone else looking out for you.

What many may not know or understand is how much allergies can affect ones mental health. I sure didn’t. I thought I understood as I discovered my allergies to gluten and dairy while in highschool and I thought it was the worst imaginable diagnosis.

I didn’t truly understand until my daughter was diagnosed at 3 months of age. I spent so many nights holding a screaming baby and bawling. I would go to the grocery store and sob over my empty shopping cart because my normal staples we couldn’t eat anymore and I had to start from scratch.

Allergies are debilitating. They can cause stress, anxiety, can break relationships, cause self doubt or fear, financial difficulty and everything that goes along with it.

For those on this journey, I am here, we all are. We understand. Find a support group of others with a similar allergy. Share your fears, share your tips or foods that you have discovered. Get medical help if you feel you have anxiety, depression, PTSD or any other mental health issues that are damaging to you, your family or is putting your health at risk. The treatment may look like medication, or it may not, but don’t be scared to get help.

To others, advocate for change, support your loved ones, try to learn about others allergies, what you can do to make it easier for them. Make a change in your office if a coworker is feeling unsafe due to their food allergies. Don’t wear strong perfumes or scents as it is disrespectful to others around you. Put out a teal pumpkin and have non food treats during Halloween. Don’t be offended if someone asks you to not eat something near them or to wash your hands after you eat, and if you do wash your hands, please wash them properly, not just tinkle them under some water.

All this to say that allergies are so incredibly complex and difficult. Let’s build each other up and create supportive environments for everyone.

If I missed anything or have a story to share, please comment. I would love to hear from you.

Our Breastfeeding Journey… with Allergies

It is the end of breastfeeding week and I really wanted to share our story on breastfeeding as it may not be one that many of you have heard or know about. Some talk about breastfeeding like it was so simple and easy. Others talk about their struggles with it; poor latch, tongue or lip ties, mastitis, bleeding, poor supply, pain etc. I knew all of this going in.

When our daughter was born in October everything was going perfectly. She latched well, she had no problems breastfeeding, I loved every second of it. Everyone talks about that feeling, of just absolute love, knowing your body is making everything necessary for you child. It’s incredible.

All that changed when V was 3 months old. She had started having blood in her stool. Now what does that have to do with breastfeeding many may ask? Absolutely everything. I started to get concerned, as any parent would be.

We went to the family doctor and she sent in a referral to see a pediatrician. Funny thing about pediatricians, they are considered specialists, so even though we had one for a different reason for V, we were required to get another referral to have our daughter seen for this new reason, which is absolutely ridiculous and a waste of time, especially since it is impossible to get in on short notice (less than at least a week). Anywho, family doctor raised some concerns that it might be serious and if she starts to have excruciating pain we should go to emergency.

Later that day I started thinking back more on the last few weeks and realized that our happy, nothing bothers her, really never cries baby, had started waking up screaming and pulling up her legs for some reason after naps and several times throughout the day. I had just thought it was a faze, that she would grow out of it, but the doctor had me concerned, so I decided it was better to be safe.

An emergency visit later, where the doctor there was not breastfeeding knowledgeable at all, told me my child was completely fine and she seemed happy so what was the issue. Of course he didn’t seem to understand that something was wrong, my child wasn’t acting like herself. She was having bouts of pain 6+ times a day where she was screaming, inconsolable. He just told me babies do that. She seems happy. Go home.

I was not happy with that and demanded to see a pediatrician ASAP. Thank goodness he listened to that and we got to go in to see this new pediatrician in the morning.

V had always been a spitty baby, always puking her food up (I changed her 5+ times a day…), always having 7+ burps a feed. She went from sleeping through the night to waking up every couple hours screaming in pain. She would wake up from naps screaming, she would scream randomly throughout the day. For anyone that knew her, this wasn’t normal. She never cried normally. She had mucousy, green looking stool with black specks or bright red blood in it, and it smelled off. Sorry, but it’s true. I just didn’t realize that all of this was linked.

We found out I wasn’t crazy, I wasn’t imagining things. Our daughter has what is called CMPA (Cow’s Milk Protein Allergy) as well as a soy allergy. It is an infant allergy that babies usually outgrow of by age of three.

I was a little confused though. I am already allergic to dairy. So one, babies can have issues with breastmilk? And two, how is she reacting to something that I don’t even eat, or at the most maybe have something that says “may contain milk”.

Apparently it is entirely possible. Any allergen can pass through breastmilk into baby. We got this huge list of ingredients to look out for and I purged our kitchen. I gave so much food away to family and friends, I honestly had no idea I had so much that contained soy ingredients! I felt discouraged, but we were figuring it out.

Those first couple weeks were so hard. I continued breastfeeding knowing that it takes a while for the allergens to leave my milk, knowing I was causing my daughter pain. She would just scream and pull away and was completely inconsolable. All I could do was rock her and repeatedly say “I’m so sorry baby girl, Momma’s trying to help. I’m so sorry.” I bawled. A lot.

I had so much guilt. So much anguish. I wondered if I should give up breastfeeding. if I should switch to formula. But I knew there was no guarantee that the formula wouldn’t bother her either.

I think one of the hardest parts was that it takes so long for the allergens to leave your body. When you first eliminate something, say dairy, it can take 2 to 3 weeks for it to be out of your body completely. So when you are breast feeding, you also have to add in that time to baby. 4 to 6 weeks to know if your diet is working, to know if you are making a difference or continuing to harm your child.

Suffice to say, I spent weeks bawling, hoping I was doing enough, kicking myself if I made a mistake. When it is just your allergies, who cares if you have a reaction when you knowingly put yourself at risk. That is your choice. My daughter didn’t chose to react. She didn’t chose to eat something just because she really wanted it, knowing she would have a reaction. I was making that choice for her. And because of this, I knew I had to make better decisions. I couldn’t knowingly hurt her.

After a while we also figured out she was allergic to corn and egg too. I had thought the soy allergy was difficult. I was wrong. Corn is in everything and part of everything.

Now, this is not everyone’s breastfeeding journey. I had it so easy at the beginning, I had an oversupply, a baby that nursed every 4 hours from the time she was born, sleeping through night from 1 month on, a dream baby. And then that changed. She started recognizing that she hurt after eating, so for several weeks she started refusing to nurse, screaming at me, crying, There were tears everywhere. I seriously questioned if I was a good mom. I must have been a monster, I was hurting my child, forcing her to nurse, making her hurt. It was pure torture.

After we got a new normal, knew what we could eat in the house, what was safe, what wasn’t, then shopping became one of my dreaded tasks. I used to love grocery shopping, what changed? I would read everything I put into the shopping cart, or really, read everything and then put it back on the shelf. There was so little I could eat. I felt like I was eating the same things, couldn’t eat out, I seriously for a time hated food. Then we got a handle on that and now I just deal with the cravings. Cravings for things I can’t eat. Popcorn, icing, the ease of ordering take out.

So, would I do it all over again? One thousand times yes. We are at 9 months going strong and I don’t know when we will stop. I love breastfeeding again. I love knowing that everything I am putting into my body is for my daughter, to keep her safe and healthy. I cherish our times together and dread being finished. Do I look forwards to the day I can have popcorn again, YES! But I can live without it, and if any of our future kids have similar problems I will go through it again, gladly, for them.

Breastfeeding isn’t easy, it isn’t simple, there is so much involved, so much commitment. But it is one of the most rewarding things that you can do.

For those that can’t breastfeed and wished they could, I completely understand. I grieved when I thought I might have to give it up. It is so important to do what is necessary for your child. For us, there wasn’t a formula that would have even worked for V, so I am happy that I was able to make the changes necessary to keep her safe and fed and healthy.

I hope that I have perhaps educated you a little, helped some moms not feel alone in such a difficult trying journey. This isn’t a breastfeeding topic that is commonly shared or known about, but it is becoming more a more prevalent. Let’s talk about our journeys. Let’s share about our parenting struggles. No judgement, no condemnation or accusations. Let’s just support each other, knowing we are all doing our best for our children.

Anyone else had a similar journey? Please share, I’d love to hear from you.