Open-Heart Surgery #1
I walked into the CICU, a new but familiar feeling knowing that my little girl who was not even two months old would soon be having open-heart surgery. How could this be our reality? How could this be something that we have to endure? How could this be our new world?
HOW, HOW, HOW?!
Each morning I would walk through the doors, say hello to the woman at the front desk, and walk into Gracie’s room. I also tried to get there before the doctors rounded so that I could listen in. At first, I had no idea what they were talking about most of the time, it sounded like they were speaking in a different language so I always had to ask lots of questions or wait until they saw the confused look on my face and explained what they were talking about. Later all of these things would be all too familiar, in-fact I would know TOO MUCH.
Each day I would hold my baby girl as long and as tightly as I could until I had to leave. Leaving her each night was the hardest thing to do. She went to bed pretty early so I would rock her to sleep and lay her gently in her crib. We were lucky enough to have two amazing night nurses that signed up to be Gracie’s primary nurses. I felt like they loved her as much as we did and truly trusted them. Honestly, some of the night nurses just were not great so I always stayed for a shift change to see who would be with Gracie.
Leaving your child in someone else’s care is also extremely difficult. As I write this tears are filling my eyes remembering that feeling of hoping they’d treat her the best they possibly could. Something I know from experience is that people just do not and cannot love your kids the way you do. This may be an obvious statement but I didn’t know what that felt like until I had my own, where you literally cannot understand how someone could not love your kids.
I also knew some nurses who were the most immature and uncaring humans I had ever met, so much that it was hard to comprehend that they were even nurses. So I knew they were out there and that scared me thinking that Gracie could get someone like that who would make mistakes that could impact her life.
As the few days passed of just snuggles turned into surgery day, I still had to think about how to care for Paisley while I was waiting in the hospital for Gracie to get out of surgery. Paisley was still on her monitor and I was terrified something would happen to her. My husband could not be in the hospital with me due to only one parent being allowed in the waiting room (shit rule!!). Therefore, I had one of the NICU nurses whom I was friends with coming to the house at the buttcrack of dawn with her two children to keep an eye on Paisley for me.
Luckily, this eased my mind about Paisley being in fantastic care. She also would send me lots of pictures and videos of her sweet kiddos snuggling Paisley.
I got to the hospital super early to snuggle with Gracie one last time before she went back to the OR. I cried a lot. I kissed her even more. My heart was literally tearing into pieces looking down at my beautiful baby girl wondering if this would be the last time? Wondering if we were rushing things? Every question flooded my brain, every outcome flooded my brain.
Again, I hate that I was thinking this way but this was the reality of me trying to accept that I had a REALLY sick baby girl. The anesthesiologist came in and spoke to me regarding what they would be doing, as well as how her intubation would go. They continued to get everything together for transportation to the OR. This included all of her wires and oxygen.
They told me I could put her back in the crib as we would walk down to the OR. With tears running down my face I asked “Can I please hold her the whole way down?”. They didn’t hesitate in saying “yes, of course”. As we walked down the hallway to the OR it felt like we took two steps and were there. I held onto Gracie so tightly and close to my face, cheek to cheek to be exact. Teardrops fell from my face and landed on hers as I hear the words
“This is as far as you can go”.
My heart sank again. This was it. This was the moment I put my less than two-month-old baby into the hands of complete strangers. I couldn’t be there to hold her tiny hand, or rub her sweet little head and sing to her like I did so many days before.
I handed her over to the anesthesiologist after hugging and kissing her one more time. I whispered in her ear
“No one loves you as mommy loves you, I’ll be waiting for you after surgery, be strong my little girl”.
I then made the long and lonely walk back to her Cardiac room where I waited for the surgeon to come in and speak with me. This felt like it took hours! Once he came in he told me what he expected from the surgery, about how long he thought it would take and that a nurse would come in hourly to give me updates. He asked if I had any questions for him but I was completely numb. I quietly said, “No, thank you”.
As if it didn’t seem fair enough that my little girl was having open-heart surgery, I also had to sit in that lonely room by myself without my husband. This was fucked up. My husband didn’t get those last snuggles and kisses. He would just get text updates from me. Covid had completely ruined everything for us. We had no chance of being together as a family, I had my husband at work, a baby at home, me alone in a hospital room and my tiny newborn having open-heart surgery in yet another room.
At a time that we all should have been together, we all were completely separated. It was such a helpless feeling. I couldn’t eat at all with my nerves all over the place so I just sat there watching HGTV, waiting. The nurse finally came in to speak with me and told me Gracie was stable and under anesthesia now, and that they planned to get started soon. She said she would be back each hour on the hour to give me updates.
So I kept waiting… It was 10 minutes past the next hour and it started to turn my stomach. When she finally came in to tell me they began operating and everything looked great thus far. I told her not to be late next time because I physically cannot handle that extra 10 minutes. While I know that sounds so demanding and unnecessary, to a mom waiting on the news over her child open on an OR table, IT’S NOT.
As each hour passed and the nurse updated me, she continuously said that Gracie was doing great. However, they did not think they would be able to close her chest at the end of surgery. Due to being on bypass, the swelling tends to be greater, making it more difficult to pull the skin together so it is safer to keep her chest open.
I was not ready for what I would see when I saw Gracie after surgery. Finally, the last visit from the nurse was her telling me that Gracie was doing great and should be back in her room within 45 minutes or so. She said she would come to get me as they rolled her back so that I could see her quickly since getting her all situated in her room would take a while.
About 20 minutes later she came to get me where she led me into the hallway. We waited for a few minutes until the OR doors opened and this tiny bed was rolled out with an even tinier little girl on it. They had her chest covered in warm blankets, she was still under anesthesia, and a breathing tube in her nose. I gave her a kiss and told her I loved her before they continued down the hallway to her room.
I had to wait in the waiting room while they got her all situated. It had been about another hour before the nurse called my name and told me I could come back into the room.
I walked into a room full of even more monitors, beeps, wires, tubes, doctors, and nurses. I was completely overwhelmed. Gracie had 3 chest tubes, an open chest, and a breathing tube. She didn’t even look like my Gracie. They pulled the blanket off of her chest so I could see the sterile sheet they use on open chests, and I kindly asked them to please put it back on.
Seeing my girl's chest open and watching her heart physically beat was something no parent should ever witness. In her chest tubes, she had blood and other fluids draining from them, this was pretty common for all open-heart surgeries. When your child has these tubes in you cannot hold them due to the risk of them being pulled out as they are simply sutured into the outside skin.
It was already super late in the day and I, of course, had another baby back at home so I had no choice but to leave Gracie. I spent what time I had holding her sweet little hand and talking to her. I was trying to take in everything that was happening.
This was a day I will never forget for the rest of my life.
Since Christmas is just around the corner I wanted to share our absolute must-have Christmas list for 0-6 months, 6-12 months, and 12-24 months! All items can be found on Amazon for quick and easy shopping!
0-6 month Christmas Gifts
Tummy time mirror — Our girls LOVED to look at themselves!
Tummy time water play mat— Paisley loved watching the water move around and it helped with her neck strength!
Fisher-Price Kick and Play Piano Gym— The girls LOVED this, I even had it in the hospital for Gracie at times.
Bright stars rattle— This was something Gracie played with a lot and is super cheap!
Bright stars ball rattle— Another item both Gracie and Paisley loved, it's an easy toy for them to hold onto.
Hanging Stroller toys— We had A LOT of these!!
Car seat toys— If you do not have one of these you need one!
Hatch sound machine— I cannot say this enough, you need this sound machine!!
Baby Bouncer— This was how I got Paisley to fall asleep some days and was Gracie's favorite! it's simple and inexpensive!
Baby Einstein Jumper— We used this SO much!
Baby Swing— We loved this so much we bought two, it is the best swing!
6-12 Month Christmas Gifts
Baby Einstein Piano— The girls loved this, and they still do!
Skip Hop baby activity Center— This item actually helped Gracie stand, it was beyond helpful!
Soft Baby Blocks— These blocks were stackable and soft for those babies who throw them (not mine of course! )
Activity Table— These are crucial to help babies start to bear weight on their legs!
Fake realistic tv remote— I swear by this, our girls love our remotes but this one is so realistic so it works!
Musical moving turtle— this was Gracie's favorite toy once she came home, great for helping baby crawl.
Learning Shape Cube— this we got from a friend and it had so much to do on it that the girls really liked it.
Baby clubhouse— Perfect for crawling babies that are pulling to stand.
Fat Brains activity tree— Lots for little ones to play with, keeps their minds working.
12-24 month Christmas Gifts
Mega Bloks— Our girls are obsessed with building blocks at this age.
Magnetic Sketch Pad— This allows kids to draw and be creative without the mess, our girls love these.
FIre kids tablet— This is the newest version which is WORTH the money, we have an older one which is really slow! This is perfect for car rides.
Pop up tent and ball pit— you will not regret getting your toddlers one of these, I promise!!
Weighted sippy cups— We use them constantly, by far our favorites!
Learning pad— Great for car rides instead of an actual tablet!
Little Tykes first slide— Safe and fun for littles, can be used inside or outside depending on space.
Fridge magnets— Our girls are obsessed with their magnets.
Little Tykes go and grow Bike— This bike is safe, allowing your toddler's feet to touch the ground.
Step2 2 in 1 toy bin— We all know someone with toys everywhere, get them one of these!
GIFTS FOR A HEART MOM
Heart Mom Sweatshirt Use code “heartmom10” for 10% OFF!
Coffee shops gift cards
Favorite fast food gift cards
Anything pertaining to her child
GIFTS FOR A HEART DAD
Heart dad sweatshirt Use code “heartmom10” for 10% OFF!
Favorite fast-food gift card
Coffee shop gift card
Anything pertaining to his child
Please take time to look at my products page, which features charitable items including Baby loss and mental health. I work with a company called PURA VIDA where I ordered a few pieces of jewelry for myself. In return, some of the profits are donated to individual charities.
Save 20% with code CAITIESCHULZ20
Stay safe, stay healthy and Happy Holidays EVERYONE!
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