During the Super Bowl this year, SickKids Foundation released a commercial with a girl named Kaitlyn.
She is 24 years old and was diagnosed with a rare disorder called VACTERL Syndrome.
So this hits close. Real close. VACTERL is part of what Adam was born with. You can see the E stands for Esophageal. By the grace of God he had no other anomalies, and wasn't considered VACTERL. It's not usually like that though. Usually babies are born with more than one. It's extremely rare to just have the isolated esophageal atresia (gap). Seeing this young girl, so healthy, at her age, accomplishing so much, absolutely shakes me to my core. It's amazing. It just really hits me how... Lucky - it's not luck though, how blessed we really are.
The flashbacks, the fear, of being pregnant and not knowing the extent of Adam's condition. Every week going for ultrasounds, juggling life, work, so much anxiety. Every minute in the NICU having extensive tests done around the clock to rule every possiblity out. Dealing with genetics when they are surprised it's "only the EA" and are up our ass for more tests to figure out why, because it's so rare to have such an isolated outcome. Being told that even though this rare it's amazing but we're going to have to stay for a year.
Not knowing how this will affect our baby later on in life. Will he swallow? Will he eat? Will he be able to sit at the lunch table by himself with his friends? Go to play on time? Eat breakfast and go to hockey practice?
Seeing this beautiful girl, grown up, becoming a nurse, with so many VACTERL issues, what she's accomplishing, when Adam only HAD the one....
The absolute guilt I feel. How can I even compare. How do I have the right to talk about this when my son is the way that he is now? Perfectly normal, like it didn't even happen. When he's not suffering from any of the other VACRL anomalies or associations. When he is the small percentage that is ok from all of this.
Why am I advocating and raising awareness when he's fine. When it doesn't affect us anymore. It's done, move on, be grateful. There are still families that are suffering every day, with what Adam didn't have.
I see it as how, why, how come he didn't have any of that when everyone else does? Matt quickly reminds me to ask instead, 'how come he was born with anything at all?!'
This is what I suffer with.
This is why I do whatever I can to help other people. Because I am in a position to do so.
It's not a bragging right. It's not a debt owed. It's not holding onto the 'one moment my child was sick' as someone so nicely put once. Though my baby didn't have any associated issues, we lived at the hospital every day and every night for eight months. My pregnancy was traumatic and absolutely ruined from the moment I found out during the anatomy scan.
Living in fear every single day, no diagnosis, no understanding of the extent of my baby's condition. Not knowing when he was born how long we were going to be there for. All. Day. Every. Day. He didn't see the sun for months. He didn't feel the breeze. He was attached to a wall, through suction, so he wouldn't die. He was intubated, unable to move, on hard narcotics when he was less than a year old. Poison in his system to keep him alive. Crying with no sound, no tears. Complications with his lungs they deflated for the surgery. Fed through the tube through his stomach. Meds. Throwing up the smallest of pieces of mushed food.
Sitting with a teacher at day care, who made sure his food was cut up small enough, who made sure he had a drink after every bite.
Not knowing if I CAN have another baby because I know that I CAN'T go through more ultrasound appointments. I can't re-live that fear, anxiety, trauma that even the thought of paralyzes my body.
But somehow feeling guilty because of where we are now. Regardless of the pain of what we've been through. Others have it worse, so I'm not entitled to feel my pain.
This is what I struggle with.
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.
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