Nov 15, 20216 min read

I Did Not Think Anything Could Get Worse

I wish this was the part where I could say that I was happy to be home and happy to see my pups (which I was) or that anything could get any worse. However, the sadness of what I left at the hospital was all too consuming. I sat at our kitchen table because naturally, I had to pump. With tears still in my eyes, I geared up and turned my pump on only to realize that I was bleeding through everything onto our nice kitchen chairs, which were fabric.

At this point, I had no choice but to finish pumping then go shower. This would be only my second shower for 1.5 weeks or so. I was not able to shower when I was inpatient because I was on bedrest and attached to multiple machines that would’ve probably electrocuted me if they got wet. I was able to shower one time after my C-section, it was a painful shower but very needed!

That night I forgot to set my alarm to wake up and pump every 3 hours (probably out of exhaustion) and slept about 5 hours before I woke up to the most painful engorgement, I would experience my entire breastfeeding journey. It was so bad that I had to get into a hot shower and physically express the milk out by hand. If anyone reading this has breastfed before you know how upsetting it is to waste breastmilk. I was pumping 4-6oz per side every 3 hours. I was a literal cow. I would jokingly moo at my husband if he passed by when I was pumping.

Now for my reality the next day… We were unable to see our girls in person, with no hugs, kisses, or baby snuggles. We were not sure how long this would last but let me tell you it broke my heart. I was a new mom, a new mom to twin girls. They needed me. I needed them.

I didn’t get to put their first diaper on, feed them for the first time let alone try to breastfeed them, I didn’t get to put their first outfit on or even pick it out as they were not allowing you to bring in ANYTHING. I was not able to give them their first baths. NOTHING.

Everything that a mom is supposed to do I didn’t get to do. However, I got to facetime them. THAT’S WHAT I GOT. I was grateful that they were so accommodating by doing this but obviously, it was not the same. Each day I would pick out some books and read to each of them. I’d tell them how much I loved them and how amazing little fighters they were.

I knew I had to be strong for THEM. They were fighting for their lives, so I could suck it up. Inside my heart was combusting. I would call multiple times a day to see how each of them was doing. Mostly, Paisley was full steam ahead and progressing well. Gracie was also progressing but not as rapidly as Paisley. Paisley came off all her oxygen just a few days after being born. Gracie, however, was still on her oxygen.

A few days passed and I did the same thing, pump, video call, pump, rest, call, etc. Everyone said to use this time to rest and heal up for once the girls came home. This is quite hilarious considering I had to wake up and pump EVERY THREE HOURS. I would wake up in the middle of the night and pump at the kitchen table with my headrest on the table and my chest dangling down. I found myself falling asleep even with the pump still going, this was how tired I was. I finally decided to put a mini-fridge in the guest room and pump in there) it was literally genius!). Now I didn’t have to go downstairs, it was much more comfortable for me.

One thing I will say is if you are breastfeeding, I sure hope you have another friend doing it too. It was nice to be pumping at 3 AM and text my twin mom friend and get a response right away. We pretty much bonded over everything even though our babies were in different situations, she was able to stay bedside with her boys. I think in some ways she felt guilty she was able to do this, and I wasn’t. However, I was so thankful that she didn’t have to go through what I was going through, no mom should.

Then I got the call… The day before my 31st birthday. The call that I could see my babies. The only stipulation was that only one parent was allowed at a time. We didn’t mind this as we were just so thankful to see our babies again! I would go virtually all day and hold them, pump, hold them until Tim was off work. He would stay as long as he could since he worked at 5 AM each morning.

On my birthday, April 20th all I wanted was to obviously be with the girls. I ate up all the snuggles and they even made me a birthday card from the girls! I don’t think they understood just how special this was for me.

Then on April 23rd, I came in as I normally did around 9 AM. I snuggled with Paisley who at this point only was feeding and growing. Then I picked up Gracie to snuggle with her. She still had her oxygen in. The nurse came to me and said we did an echocardiogram on Gracie’s heart just to make sure everything was okay. I said to her “is this normal?”. She assured me that it was normal and that I should not be worried. This gave me SOME comfort but in the depth of my heart, I knew something was wrong.

They sent in the nurse practitioner to talk to me about what was found. These echocardiograms are always sent out to the Children’s Hospital of Wisconsin to be read where they have a full cardiac team that can spot even the smallest thing. She said to me “Grace has a Congenital Heart Defect called TAPVR”.

First, she could have been literally speaking in Spanish to me as I had no idea what any of this was. Obviously, CHD I somewhat understood but TAPVR?!

Total anomalous pulmonary venous return (TAPVR) or connection (TAPVC) is a birth defect of the heart in which the veins bring blood back from the lungs pulmonary veins) don’t connect to the left atrium like usual. Instead, they go to the heart by way of an abnormal (anomalous) connection.

I honestly wish I could tell you my reaction but at this point, I blacked out. The brain has a funny way of protecting you from memories of certain trauma. I do remember Gracie’s nurse crying with me and trying to comfort me the best she could and asking if my husband could come in to be with us, which they were very accommodating of this. I called Tim crying hysterically and told him that he needed to come to the hospital right away.

Once he arrived, I had the nurse explain once again what was going on with our 12-day old baby girl, who was literally perfect IN EVERY WAY. By no surprise, we both were feeling every emotion but mostly fear. I couldn’t imagine our baby girl not making it. I’m sure most are thinking “don’t think like that”. But this was our reality! Our reality is that we had a VERY sick baby.

I left the hospital after snuggling with Paisley and leaving Tim to snuggle with Gracie as at this point, we were told only one parent in total could be on the NICU list at Children’s Hospital. I wanted him to get every snuggle in with his baby if he was not going to be able to see her for a bit. Luckily this was misinformation which I was so happy to find out!

I called my mom on the way home who put me on speakerphone so my dad could hear too. As I was crying and trying to explain to them the news we just found out. I said to them “I don’t know that I will be able to come back from this if I lose my baby”. My dad replied,

“honey, you have no choice because you have another baby that needs you”.

He was right. While I still felt what I felt and I still remember that feeling to this day, Paisley needed her mom too.

Gracie was transported to Children’s Hospital of Wisconsin by ambulance early the next day. I got there early as I had no idea where I was going, or exactly what time they were arriving. At first, they had no results for a Grace Schulz in their system, so a rush of panic came over me. Once they found it, they directed me where to go and how to get in to be with Gracie. I got to the front door of the NICU, and they told me I’d need to wait for a few minutes as they were currently getting her all set up in her incubator.

That was the longest 10 minutes of my life. Little did I know what kind of journey we were actually in for.