When people hear the phrase ‘baby weight’, they often think of the extra pounds mamas hold after carrying a baby and then delivering them into this world. Contrary to popular belief, this is not what I am referring to. To me, I am referring to my baby’s physical weight. Never in my wildest dreams would I have imagined the hardships our family would face to get our children to eat. I always thought that once my baby’s intestines were back inside their belly, they would do all the things a “normal” baby does...aka EATING. It has been an extremely exhausting process - both mentally and physically - and I’m even getting teared up while writing about it.
My eldest, Theo, struggled to gain weight in the hospital. I began pumping and he would receive my milk through a bottle. The next step was to fortify the breast milk to help him gain weight. But anytime he had a successful feed, he would vomit it all up and then some. We were feeding him every 2 hours around the clock. It was just horrible - at night the nurses advised me to wake him up by changing his diaper then using a cold cloth in hopes to heighten his alertness and thus consume more ounces of milk. Then every time Theo made weight gains, his milk volume would increase and the cycle would begin again. It felt like we could never catch up. I so desperately wanted to get the hell out of the hospital - mentally I wasn’t coping at all. The staff agreed that home would be a less stressful environment for everyone and hoped less stress would improve eating.
Being discharged from the hospital is a surreal experience. You feel excited but with that comes so much guilt about leaving the other families that will be there for longer periods of time, or even worse the ones that don’t get to go home. And above all you’re terrified! When you’re in the hospital with your baby for long periods of time there are so many people checking your baby 24/7. When you go home you’re not only a new mother but also nurse.
When we got home with Theo, he would drink only half of his small bottles. I continued to pump for a couple more months but he still wasn’t gaining weight. I decided to throw in the towel as our whole freezer was full of unused breast milk! We tried every medication for his reflux but he continued to constantly vomit. My day consisted of trying to get him to eat at the perfect time so he could get in the correct volume and subsequently being covered in vomit throughout the day. My husband was super supportive and tried to feed Theo as much as he could when home because of how stressful I found feeding. Everyone would tell me that Theo could sense my stress but this only made things more stressful.
I kept asking myself: “I am his mother, why can’t I feed him?” My whole life revolved around getting a certain amount of ounces of milk into him my month and later G-tube, then reporting the information weekly to our nurse practitioner/pediatrician/family doctor. It was extremely frustrating because my husband would be able to calmly feed Theo and he would drink his whole bottle. It was so infuriating because I was the one that was producing the milk, I was the one that was home with him all the time and I was the one up with him constantly through the night but yet when daddy fed him a bottle he ate it all and went to sleep… Like what the hell!?
The trauma from being in the hospital plus literally NO sleep at all left me in very bad shape. I couldn't understand why I could not get him to eat and felt like a complete failure. I was diagnosed with Post Traumatic Stress Disorder and severe PostPartum Depression.
As mentioned in my bio, I am a fitness enthusiast! I thought I would be that mom that always comes with the perfect healthy snacks and have these amazing homemade recipes. Instead I was the mom with the unhealthy underweight baby. I wanted to be a mom so badly, but here I was feeling like I would get the “mom gene”.
Despite my mental state, I was determined to join a mommy playgroup...right, is that what a good mother is supposed to do? It took everything I had to get to that playgroup, but I did it and ended up meeting a lifelong friend and many other fabulous mamas. But the thing about this mommy playgroup is obviously all you talk about is all things baby, which usually includes eating and growing.
Everywhere I went it seemed that people always commented on my son’s size….even strangers! One of the worst memories I have is the first time I went to a singing class with Theo. I was so proud of myself for getting out the door and excited to be doing normal, non-hospitalized things. We went around the room and said our kid’s names and ages. I remember telling the group that my son was six months old and I can vividly remember the reaction of 2 other mothers in the group. I remember exactly what they look like, what they were wearing and their faces. I remember them grasp as their jaws hit the floor when I told them my son was only six months and approximately 10Ibs. They couldn’t believe how small he was. Then when you are not sleeping and you were plagued by the trauma you went through at the hospital, comments like these would put me over the edge.
I felt like a failure and a horrible mother. I had dreadful thoughts about me and my baby, and struggled to connect to him. To read more about our feeding struggles and tube feeding, you can read the feeding and tube post on the blog. But I want to get back onto the topic of weight.
As a woman it would be completely offensive to say to another woman after they’ve had a baby “oh wow, you’re still hanging onto a lot of baby weight”. For me, I would take the same offense when others called my baby small. When someone would make a comment regarding my child’s size it was not them matter-of-factly stating the fact that he was small, for me it meant he was small so he was sick. He didn’t have enough nutrients for his brain to grow, he could have to be admitted to the hospital again...and above all I am the biggest failure in the world for not being able to feed my kid.
Looking back on it, of course my kids would be small! He was not held or fed through the mouth for 2 1/2 months. Of course my kids are going to be delayed at walking and crawling and moving their head as they were literally addicted to opioids for the first two months of their lives
How to get through it when you’re in the thick of it:
Things that helped me were:
1) Getting my husband/family members to feed my son the bottle as much as possible without me being in the room.
2) Going to a friends house during meal time as he would usually eat better with other children around.
3) Asking help from grandparents for feeding, especially on the weekends.
How to deal with negative feeding comments:
When you’re in the baby phase, all you seem to talk about is how your baby sleeps, eats and & poops, and that’s pretty much it (or at least that’s all I heard). But when your child isn’t achieving these basic baby survival markers, and you are in constant communication with a medical team, simply hearing a conversation about another child’s positive weight gain, is enough to really put someone (ME) completely over the edge. I remember getting together with a group of my university friends that I hadn’t seen in a while for a play date. At this point Theo was being fed through his G-tube. During the playdate, everyone casually was feeding their babies and food was a huge topic of discussion. I remember leaving and driving home while connecting Theo to his G-tube in the car ride. I was bawling my eyes out. I was so angry and upset that my son had gone through so many obstacles and was still struggling with eating. He literally had a hole in his stomach to eat. One of my closest friends in the whole world called mem after the play date. She mentioned I seemed a little off and asked if I was home yet. I should’ve been home in about 45 minutes but the G-tube bag wasn’t distributing the milk properly and I had to stop many times on the way home to reconnect the bag. I would often give feed Theo small feeds in car rides because he was elevated in his car seat and this helped prevent reflux. I explained to her that I know it’s a normal thing to talk about eating but all we did was talk about eating and snacks and Theo doesn’t need anything right now through his mouth. I explained to her that I just feel so overwhelmed. She said so many wonderful things to me and reminded me that she had no idea how hard things must be for me. People like these are your tribe! Keep them close to you. and Despite them not fully getting what you’re going through, if they’re able to divert the conversation or simply acknowledge that talking about weight and feeding is a really triggering issue, these are the people you want to stick with.
Unfortunately I have tried to talk to other people in my life about how these comments can be hurtful. To them they may might just think it’s a casual comment about their kid’s development, but to me it’s a constant reminder of what my kids have had to go gone through, and the worries I have still about their growth and development. The unfortunate thing about having medically complex children is the people you think will really understand you sometimes don’t, but sometimes people come into your life who are able to support you in unimaginable ways.
Everyone’s got their crap and everyone’s got their story but as a friend you need to know your audience. My closest friends would never tell me about their kids' doctor’s appointments because they know that I’ve literally lived in and out of the hospital with both of my children for three years. It’s not that they don’t think I don’t care about them and their child, but they know and understand still grieving my experience.
1) Avoid situations where there is a lot of baby talk. Even if it is a baby shower, your mental health comes first! Celebrate with your friend with a private dinner date. If they are a true friend, they'll totally support you.
2) Remove people from your life that trigger your trauma and do not support you. Family or not - YOU have a family now and that comes first.
3) Consistently remind yourself of the GOOD and UNDERSTANDING people in your life. Stick with your tribe no matter how big or small.
*trigger warning - very sensitive topic for me, so there is profanity in this post. Just keepin' it real.
Whether it's bad timing (for real, it's ALL bad timing) or whether you're there for a long-term stay like we were... there's no worse place to be to celebrate anything remotely fun or joyous... however, SickKids for one is really amazing at keeping every single holiday spirit alive. I feel like they have a list of random holidays and even celebrate those ones too, like National Book Day or something.
As for the bigger holidays and events, no one ever wants to be there for that.
We missed a ton of holidays when we lived there for ¾ of a year. Starting with Easter, Mother's Day, Father's Day, Canada Day, both long weekends, Thanksgiving (which was the hardest for us), & finally Halloween.
Thankfully, we were home just in time for Christmas.
The Ronald McDonald House does the most amazing things for parents during these special days. Both Mother's Day and Father's Day we were greeted with a bag of goodies that were donated by different families and companies. It was a great pick-me-up! Very much appreciated!
As for spending so many days at the hospital… I'll be real with you, it fucking sucked. We missed out on Summer BBQs, cottage nights, bonfire drinks and laughs… Thanksgiving hurt the most because it's the beginning of the holiday season - all the big cozy family get together ones.
We stayed with Adam while our families got together and had the most delicious meals and laughs, with cousins joking and football games on tv (ROLL TIDE!). We opted out from celebrating Thanksgiving at all - my parents offered to cook and bring it to us, but we wanted nothing to do with it. Out of sight out of mind. We made it just another day. It sucked so bad.
As for Halloween…. Hah. Spooky, terrifying, haunting… all a gross understatement.
October 30 was the last day we were in the CCU. After a miraculous conversation and fiiiiinally an extubation, Adam was given the go ahead to go back upstairs and back "home" to 5B.
When we arrived that night, I finally felt that I could relax. That for the first time in what felt like forever, we were in the clear, we were safe… we were on our way to going home!!!!!!!! We had our nurses back, familiar faces, the happiest of greetings seeing Adam had a successful surgery and missing his sweet face for a few weeks…
It wasn't all rainbows and butterflies though. Every single person tried to convince me to go back to RMH (I literally LIVED bed side in the CUU) ...I know, gross - didn't leave to eat or shower… I know, I know… but when you're watching your healthy baby now hooked up to a machine breathing for him, I literally could not leave his side.
So I stayed the night in 5B.
I'll keep an already long story somewhat short, but that night around 1 or 2am ...after NUMEROUS times of me BEGGING our not-so-favourite nurse to change Adam's NG tube tapes….she didn't.
Adam pulled it out.
Keep in mind throughout his entire CCU stay they literally had signs over his bed, our 5B Fellows would come in daily to make sure NO ONE TOUCHED OR MOVED THE NG. It was acting like a stent so that his repaired esophagus could HEAL properly.
If it was moved or touched it could tear his anastomosis (Lord, there's a trigger word) ...it means it could tear his repair, the surgery would be pretty much useless if it unattached because of the removal or movement of the NG, as it was left in place for his esophagus to heal around it.
Adam's surgeon wanted it in as long as possible to make sure everything was perfectly healed, it was to be removed a few days before we went home, so like a month - NOT 15 days.
So I closed my eyes for literally 5 seconds (honest to God, the first time I "relaxed" in WEEKS, finally feeling safe back on 5B…. to open them to Adam laughing with something in his hand.
Groggy and confused af, I think to myself "umm he pulled out his replogle…. Omg he doesn't have a replogle anymore… his NG!!!! THATS HIS F&*$# NG OMG!!!!!"
Guys, I screamed so damn loud… I lost my shit. Total understatement. I absolutely just lost it all. I'm talking like screaming, crying, panic attack, full blown ugly cry, shaking, not breathing… panic beyond panic.
A friggin CCU nurse was dedicated to making sure Adam's head and this damn NG tube DID NOT MOVE A MILLIMETER…. and now it's in his hand. He pulled the whole thing out up through his esophagus and out of his nose. Jesus take the wheel! I thought I was going to pass out.
I told the nurse numerous times she NEEDED to redo his tapes because it was waaaayy too loose and not secure. She said she'd do it. I swear I asked her a hundred times. I feel asleep for 30 seconds, she went on break, ignored my request AND THIS HAPPENED.
Y'all I lost it. When I came back to, after nearly passing out… the panic was so dang strong still, but the RAGE. Thank goodness one of our fave nurses ever was there to calm me down. She assured me that it happens all the time. She sat with me and really just helped me not get escorted out for kicking the shit out of the other nurse that night.
I told you, lots of swears. I'm sorry but this night and what happened literally haunts my nightmares. Thinking that everything we just went through, the literal HELL that was the CCU, and now because someone screwed up something so simple - it all could have been for nothing, and the worst part was, he'd need another surgery, another intubation, more sedation.... it was honestly the worst case scenario now that we were past the surgery and clear of infection.
Anyway, Matt was at RMH because he went back to sleep… SOMEHOW before all of this NG drama happened, when he left an hour earlier he knew I was in a terrible place and he called my parents who graciously got up and drove an hour+ after midnight to be with me… by the time I caught my breath, I called my mama and BLESSSSSS them - they were in the SickKids parking lot. So after it all happened my parents were there 30 seconds later, not even knowing the shit that just went down.
Talk about good timing eh.
(btw, not many people know that story, and it was therapeutic af to write all of that out and get it into the open. Cause Lord, it has been weighing on my soul keeping some of these experiences in. Even though I can now laugh at it… these memories haunt me, daily. Here's to hoping releasing them causes some peace).
Halloween… in the morning (after I spoke to Adam's surgeon who assured me everything was fine, thank Godddd!!!) ….we dressed Adam up as a lil sushi.
My parents and brother took us for all you can east sushi before Adam's surgery and we probably ate thousands of dollars worth of food lol, so for some reason I decided to dress my kid as a sushi for halloween. Don't ask - I don't know why lmao. But I literally hand sewed on felt in the shape of salmon and added a lil wasabi, and Adam was having none of it.
The first day of this kid's life tube free, he was wearing a hand sewed sushi costume for Halloween. Not a super hero. Not a doctor. A sushi. Lol. We're not even Japanese ...we just really like eating sushi.
He was super cute though!!!
This pic is actually really hard for us to look at. Most of the time, actually ALL of our time on 5B Adam ONLY had a foot monitor (standard for every patient) attached to him. So to see him with those ...I don't even know what to call them, ports? needles? dangly poke things.... and even worse is seeing him STILL so drugged up on hard narcotics (he was being weened off of morphine and things I can't even begin to guess how to spell) ....I see it in his eyes, he wasn't fully back to himself yet. It breaks my heart. It really is so hard for me to share these images).
But yeah, what I'm saying, is that you can make the best of being there. The nurses dress up, the atrium has activities, Child Life comes by with treats and gifts - they really do make every single event or holiday memorable (hah! was it ever!!!) ... whether you decide to participate or not.
…..hey, do you think there's a Bravery Bead for that?
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