Thoughts of Grief Were Swarming My Brain

I walked into the NICU where my beautiful and perfect newborn preemie baby lay in her isolate. I was consumed by all the thoughts of grief that were swarming my brain. Meanwhile, experienced the guilt of knowing I would not be seeing Paisley today since she was 30 minutes away in another NICU and Gracie really needed me today. I did not know what mom’s guilt was but that day it was all too recognizable. That is right, I now had one baby at Waukesha Memorial and one baby at Children’s Hospital.

I reached down, unsure if I could pick up Gracie or not when the nurses came in to speak with me. They noticed my hesitation and quickly said “that is your baby, you pick her up whenever you want”. This was something I absolutely needed to hear. Especially since at Waukesha, it was NOT like that. I appreciated the nurses being so blunt about making me feel comfortable. She is my baby, I grew her in my body, I loved her before I even knew she was a little girl, she was MINE.

The nurses went on to tell me that Gracie would be getting another Echocardiogram sometime during the day so the cardiologists could look further into what was going on with her heart. We waited… and waited… we waited in fact for about 5 hours before the echo tech finally made it up to our room. I had no idea that we would have multiple echoes coming our way, so naturally, I tried to decipher what I was looking at. That was my first mistake, realistically I had zero idea what I was looking at. I did not even know this kind of disease could happen to an innocent baby.

The echo techs cannot tell you what they are seeing, we had to wait for a cardiologist to come to talk with us. Yet again… we waited. I was holding Gracie tightly as the cardiologist came up to speak with us, I asked him if I could record him so I could play it later for my husband. He said of course and proceeded to draw a diagram of Gracie’s heart to explain further what they found. He said that her heart was not “as bad” as they initially thought. Instead of having TAPVR she had what was called PAPVR.

Partial anomalous pulmonary venous return (PAPVR) is a rare heart defect that’s present at birth (congenital heart defect). This condition may also be called partial anomalous pulmonary venous connection (PAPVC). In this heart defect, some but not all the lung blood vessels (pulmonary veins) are attached to the wrong place in the heart.

Normal Heart (Left) PAPVR heart (Right)

While I was happy to hear this news (of course!). She still would need open-heart surgery. Tears started rolling down my face as I looked at my sweet innocent little girl then looked back up at the Doctor. I could not stop thinking “what if my baby does not wake up after surgery”. This was my greatest fear! I also kept asking what the chances were of her not making it through surgery. I hated that I was thinking this way, but I was so scared that we would put her under for surgery and that would be the last time I saw her alive.

My baby was born just 13 days prior. I didn’t even get two weeks of pure bliss being a new mom to twin girls. Hell, I didn’t even get one hour since they were swept away to the NICU right after being cut out of my body.

The cardiologist assured me that mortality rates were extremely low and rare. My brain then goes too well they may be low and rare but so is the heart disease that Gracie was diagnosed with (1%). So really this was not helpful whatsoever. They continued to explain that because Grace had a small hole in her heart that the oxygenated and deoxygenated blood was able to mix which was helping her not need surgery immediately. Therefore, Gracie would have some time to grow and get stronger for her open-heart surgery. Our hearts are about as big as a balled-up fist, and Gracie could barely even hold one of my fingers, her hands were so tiny. After all, she was just 3lbs!

I was a mess. The only thing keeping me from opening my own chest to give my heart to Gracie was that I had two tiny babies that needed their mom to stay as sane as she possibly could. I stayed with Gracie all day cuddling, pumping, cuddling, and pumping. I don’t even remember eating, but they did bring some graham crackers in for me. When it was time to head home it took me about 300 “good nights” and 1000 kisses. Luckily, they had something called “angel eyes”, where we could watch her on camera when we were not there. This was fantastic and I wish Paisley had that too!

This was one of the toughest things for me. I cannot lie I HATED the hospital. I did not want to be there whatsoever. I’m a huge homebody and I just wanted to take my girls HOME! I hated feeling like I didn’t want to be there because ultimately, I didn’t want to leave either one of my girls’ sides either. It was the worst conflicting feeling, knowing that I needed a break and to go home. But I NEEDED my girls too. So again, the mom’s guilt kicks in full force.

I made it a point to always go home and sleep, instead of sleeping in the NICU with Grace. It was a hard decision, but I needed to be mentally on point the best I could for my girls and sleeping on a hard couch with everything beeping (not to mention Grace liked to hold her breath (apnea) and sound the alarms) I would have been up all night and a total wreck. I still to this day believe that was the best decision I could have made for myself and my girls.

As I left the unit and took the long walk back to my car, I had a ball in my throat the whole time. I got to my car, turned out of the parking lot, and made my way to the freeway home. The rush of emotions hit me all over again. I could not understand

“Why? Why my baby?”.

She was planned, wanted, and I needed her badly. This was when I started to realize that each day of this new reality was slowly killing me. I felt like I was dying just a little bit every day.

I got home. Ate something, pumped, and headed to bed. I was still pumping every 3 hours so it was critical to try to get to sleep as soon as I could. I would call the Waukesha NICU to get updates on Paisley and the children’s NICU for any updates on Gracie before I went to sleep and then checked up on Gracie on Angel Eyes. I’d just watch her sleep for moments on end.

I’m sure many would think “how could you sleep at night?”, and the truth is I could sleep. In fact, I slept HARD. I was so exhausted from the emotional and physical toll the stress was taking on my body that even my face began to have a huge rash on it, that later I needed to go to the dermatologist. Stress is so hard on the body, I felt like I was aging years overnight.

This picture shows what was going on with my face.

Gracie would be in the NICU now for a while to keep growing. This was tricky, her heart had to work extra hard to pump that she was burning more calories than your average baby. Getting her to gain weight was going to be a tough time. They were fortifying my breastmilk to increase her calories. They did this with both girls from the get-go. Many newborns lose about 10% of their body weight in the first few days of life so to keep the girls gaining they had to fortify my breastmilk, this was very common in the NICU.

So here I was, I had two babies. One in one city and the other in another city. Every day I was torn between where I was and where I was going next. The next few weeks would be as follows:

1. 9 AM-1 PM: In Waukesha with Paisley trying to breastfeed when I could and when she was ready.

2. 1 PM-2 PM: Driving to Gracie

3. 2 PM- whenever it felt right to leave: Snuggling with Gracie.

This was EVERY DAY for WEEKS!! You want to talk about having your heart torn in half, this was mine. The guilt was consuming me. “Did I spend more time with Paisley than Grace?” “Or was I with Grace longer than Paisley?”. I did get to a point where I needed a break. We didn’t have groceries or clean clothes, and my house was a complete wreck. I decided that on Sundays I needed to take a day off. This was another horribly difficult decision to make. But luckily, I knew my husband was going to snuggle the girls and that gave me some sense of relief.

But let me stop and talk quickly about all the things that needed to get done outside of living in the hospital. I needed to grocery shop, do laundry, clean up the house, we had/have three dogs (big hairy dogs!). Something I did not think about until much later when I had the time was “why is no one asking to help?”. I had two best friends at the time (yes, at the time which I’ll touch on later) and no one asked if I needed help with home things. I wonder now if I was in their situation if I would’ve offered to help more, and truly I know the answer is yes. That is my personality, I have always been more of a caregiver (my fault). Everyone wanted to know the details of Gracie and Paisley, but no one wanted to go out of their way to help me outside of dropping off a meal.

Do not get me wrong, I appreciated EVERY meal dropped off. That was one of the BEST things our friends and family could’ve done for us, starting our meal train but I expected more from the people so close to us. My own friends, who I had dropped things for many times to make me feel special wouldn’t offer to help with everyday things? I realize this can be very controversial as a topic of conversation, and they may feel as though they did more than their fair share. But this is my story, my side and if they want to tell their side then they can start their own blog.

The moral of the story was it was not enough; it isn’t enough and I’m not changing my mind. We were going through absolute HELL. A living nightmare.

I have currently raised over $500 for our heart families in the CICU at Children’s Hospital. We are looking to raise as much as we can to do something special for these families during the holidays. Being in the hospital is so hard in general but extra difficult during the holidays. Please consider donating to such a special cause. You can contact me directly at www.traumamommamethod@mail.com or on Instagram and Facebook!

I also would like to put in a bulk order for Heart Warrior bracelets, the proceeds will go to these families whether that would be meals, coffee, shirts, or anything else they may need.

Now the bracelets are available on my Etsy site. They will be in a red string with either a gold or silver heart!

Each set will be $15. If you are looking to donate directly to a family please email me at Traumamommamethod@mail.com

I’d like to take a second to acknowledge my hometown of Waukesha, WI. Something very terrible happened yesterday and many were injured. Someone or more than one person hi-jacked an SUV and drove it down the middle of a holiday parade. They ran over multiple individuals and they fired shots out of the car windows. This is absolutely heartbreaking to hear that so many were hurt in this selfless act. Please take time to hold your loved ones a little bit tighter, and be thankful for all you have. Life is so unbelievably precious!

My Heart Warrior Collection is officially up and ready for orders! As most of you know this is a very important part of our story.