Did Your Kid Die Too?

Pt. 2

I’ll share a little backstory about how Lily’s diagnosis came about.

I had a textbook pregnancy. Despite being very ill, losing 15lbs, and being so very miserable while pregnant, everything was on target and going well. While pregnant with Lily I had made the decision with her dad that I would not be having any more children. I always wanted 4 kids. But after struggling for so long to just get pregnant and then being so fucking miserable, I said fuck this.

But the part that I told no one,

I was so unhappy, so anxious, so miserable, there were days where I literally wanted to kill myself.

I didn’t share that with anyone because I felt ashamed that I even was feeling that way. I should be over joyed and elated that I am finally getting my baby, but that’s not reality. It only got worse later. Buttttt jokes on me. I ended up having another baby, but more on that later. There were so many things along the way that I tried to “plan” and control and predict. I had no idea that the universe was going to throw me the biggest curveball of all. 

One week before Lily was due, the midwife noticed that Lily’s head was no longer facing down. She was now inverse of how she should be. I was given 3 options. I could have a c section, I could do an inversion, or I could wait and see in a few days but my c section could be riskier. I’m not really adverse to medical procedures, aside from getting a c section. So I elected for the inverse. 

That night I decided, with Joey, that he should take some maternity pictures of me. I had been adamantly against them and quite vocal about it not wanting them done. I claimed that I just didn’t want them or I didn’t like them.

But the reality was I hated my pregnant body

I also hated how much they cost for other people to do them for you, and we have zero extra income. But luckily, Joey and I had gotten into photography. So we went to the beach and took photos. I hated how I looked. But after Lily was born, I cherished those pictures so much. Because in those moments, I was so fucking happy to be having her. My big purpose was finally arriving. I wasn’t wrong. But I also was not expecting the other ways she would do this. 

One of the Pics from my Maternity Shoot my then husband did.

The very next day they were able to get me in for the inversion. It was quite neat because that day, they had a ton of med students and residents on the floor. An Inversion is not a normal procedure, so they were hoping I would allow the students to watch. I grew up with family members as doctors, so I know how important it is for them to learn as much as they can, especially in rare opportunities. How else are they going to ACTUALLY learn the shit to help us. So I had a ton of people in the little room but it made me happy because people got to learn and I loved that. Still do. But I was hooked up to everything because if things went wrong they would need to whisk me back to the OR. 

During Lily’s pregnancy, I ran and lifted weights. This later made it stupid difficult for this one nurse to get an IV in me.

🚨🚨WOOOOP DIGRESSION🚨🚨

When you exercise a lot, you get more valves to your veins than an average person, apparently. The nurse kept trying to stick the needle in all the wrong places. Eventually they called in a different nurse and I asked for them to put it in my hand instead, so they did and then they immediately administered the muscle relaxer. That shit made me SHAKE. It sucked. But I was on zero pain meds. Pain meds and I don’t have a good relationship.

So the midwife comes in and her and the eldest resident put some kind of lubrication on their hands and said “ready”? After obviously going over all of the everything that they always have to do before anything is done to the patient. I said “let's do it” and they did their thing and within 30 seconds probably, Lily flipped back around. It was the easiest one my midwife had ever done. I know now that Lily flipped so easily because of her low tone. It did end up being a huge blessing. 

Lily’s due date was one day before my birthday. She ended up being born on that date.

Lily’s birthday is one day before mine.

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That day, Feb. 24th, I went out for coffee with one of the girls I had met through Reddit, and I had no clue that I was probably already in labor. But I sat and chatted with her while drinking my lavender latte all while oblivious to my future. Additionally, my parents came down later that day to celebrate my birthday and take me out to dinner. My mom also really wanted to get me a lightweight robe. Someone had given her one right before I was born and my mom told me that it was really helpful in the summer months.

Those memories stung for a long time for me. It hurt to think about after Lily was born, because I wasn’t able to breastfeed in that robe, which was another reason for the robe. But then they stung later because of well… everything.

But anyway, where we were eating was right next to a mall so my mom said, “lets go to JCPennys’s and see if we can find you a robe.” That whole fucking time I’m having contractions. I just kept walking and timing. I feel like my mom kinda knew but who knows. Again, I wasn’t saying anything to anyone… not even Joey. WHY?! Fuck if I know friends.

Eventually I did have to say something and I asked to go home because I was tired. We drove back home and my mom said “put a towel down just in case your water breaks” holy shit my mom could predict the future lol So I slipped on an adult diaper, because someone had told me they were life savers for postpartum. But I slipped one on and laid down in my bed.

Within 5 minutes of laying down I felt a pop and a gush. My water broke. This is around 6 pm. I went to check to see if it was in fact my water breaking. And everything was green. My waters had meconium in it. I called the Labor and Delivery unit because I was unsure what the protocol was. They told me to just come in. So I called my doula to let her know and she said she was 45 minutes away and was leaving right then. And my parents volunteered to stay over and feed Piper, our dog, and help with anything we might need.

It was so ironic that they had already planned to be there that day because I didn't want ANYONE to know that I would be in labor, even my own parents. CLEARLY, the universe knew I was going to need the most support in my life than ever before. So my parents stayed at my tiny apartment in Oceanside and we headed off to the hospital. 

When we checked in I was at 4 CM dilated. The nurses on staff told me most first time moms go a centimeter every 4 hours. My brain broke at that moment. BUT I was not normal lol So I got comfy and within 30 minutes of checking in, my doula arrived. Bless the fucking universe for her soul. I don’t think I would have made it without meds had it not been for my incredible doula. I DID NOT want an epidural. I wanted to wear the ribbon that said I did this unmedicated. I wanted to be that strong. SO many people had told me I was weak or had a low pain tolerance and I wanted to prove them wrong. I also was worried about getting paralyzed. HA.

But once my doula got there things really started to flow. We were listening to music and she had essential oils billowing into the air. It was such a peaceful environment. Around 11pm they checked me and I had dilated one centimeter. ONE. I felt so defeated. It really did take about four hours. At this rate she would come AFTER my due date. My doula and I both agreed that Joey should go get food, as we completely missed dinner and I wasn’t allowed to eat. I really really wanted to rest. So I finally got in the hospital bed and laid down on my side.

I was laying there for maybe 5-10 minutes and all of a sudden it was like everything went into overdrive.

I had never ever felt pain like that. I was SCREAMING. I never got a break either. It was just a constant contractions. At that moment I broke and asked for an epidural. My doula kept trying to get me through it like we agreed. And I would keep breathing and then start crying because I couldn’t bear the thought of feeling this pain for the next 36 hours. At 11:15 ish  my doula went and grabbed a nurse to get me an epidural. But they had to check me first. The nurse reached up and I FELT NOTHING. That was not normal.

She looks up and says, honey your baby is right here. I can feel her head.

My eyes went wide in shock and I frantically started yelling at my doula to call Joey. THANK GOD he wasn’t very far and was already on his way back. I had wanted to give birth squatting but there was no moving me. I had zero control over my legs and could hardly sit up. Joey came rushing in 2 minutes before the doctor and team of nurses came flying in. Around 11:45 was when I started pushing. It was a struggle at first, until they gave me a mirror. ALSO something I was not expecting to want or need. But once I got her head out, Lily came flying out, literally, at 12:15AM on February 25th, the day before my birthday.

She came out flying because of her low tone, she also wasn’t breathing and again, thank you universe for the meconium, because an entire team was there ready for Lily just in case. Well she wasn’t breathing, but within 30 seconds she was resuscitated and breathing. But I still didn’t hear a cry. And then she was whisked away.

I went from euphoric to confused and in so much pain.

It would be an entire hour before I would actually get to see my baby. During that hour I was stitched up. Again, with no meds, because even lidocaine doesn’t work well. The shots of lidocaine hurt more than them stitching me up. During that time I kept asking my doula to find out what was going on with Lily and if she could find me any food. She achieved both.

I had the most delicious lean cuisine courtesy of the nurses on the floor. It was only good because I was starving. And the nurse practitioner for the pediatric side came in to talk. The NP told us Lily needed to be transferred to a better hospital with an actual NICU capable of taking care of her. They were worried about Lily’s tone and some of her facial features concerned them that she might have something genetic. I had no clue that it would be one of the worst possible things that a parent would have to face.  

I finally got to see Lily around 2 or 3 am before she was taken to Balboa to the Naval medical center, via a very special, very costly, (thank you so much Navy) NICU ambulance. But I couldn’t hold her. I could just hold her hand and sing to her. So that’s what I did. She was not like a normal baby. She didn’t move at all. But she did have a reaction to my singing. It made her heart rate lower and her oxygen saturation go up.

So I sat there, on this hard as fuck wheelchair, 2 hours after having multiple stitches sew into my vagina, with NO MEDICINE, and just sang and sang.

I was so delirious by that point. The EMT’s that took her were so amazing and kind and made sure I got to say goodbye, by the time they finally got to take her around 4am. At that point I was in recovery and attempting to sleep. You would think after being so exhausted that I would sleep in very late. No. Wrong.

My body and soul KNEW something was missing. A part of me was gone.

God, I had no idea how much worse it would get.

By 6am I had to pee and so I got up, on my own because I didn't ask for help. And waddled to the bathroom… all while dripping blood everywhere because well… you know why. After that I paged the nurse. Not for help, but to ask them when I was going to get to see my baby and when I could be discharged to see her. I asked them to tell me everything they knew, everything they had heard from the doctors down at the other hospital.

They didn’t have much information. But I kept asking. Around 8am my parents showed up with my beloved vanilla soy latte from Starbucks and brought me things to help me freshen up and to try and get some answers. They didn’t get any further than I did. By 9am I was pushing and pushing the attending to discharge me. I told them

“I’m going to another fucking hospital, why does it matter?! When am I going to get to see my baby???”

They gave me lots of answers as to why I needed to wait longer. But mostly I got a lot of run around. By 10 am the NICU staff had done their rounds and I FINALLY got some kind of answer.

The NICU told the OB doctors that they were very concerned about Lily having some kind of genetic condition. They said that her tone was extremely low and that she was on oxygen and had an NG tube because she showed no signs of feeding on her own. In my brain I thought, ok I can work with this. I texted my cousin, a doctor, about it all and she tried so very hard to give me so many reassurances. She had no idea the shoe was about to drop. The last thing they mentioned was that they thought she may have Turner’s Syndrome. God how I wish that would’ve been the case. While I don’t want people to have hard conditions, Turner’s syndrome would’ve been a walk in the park compared to what Lily was diagnosed with. 

At that point I was hardly holding it together but there was no one who was going to see me cry. I just wasn’t going to let that happen. So I told the postpartum staff I wanted to speak with the NICU. They called the NICU for me and I straight up said to them “ I need to see her TODAY.” And they said “Absolutely, meet us for our evening rounds”. So I told the postpartum nurse to tell the fucking attending to let me go. And he did release me, only after I ate once more and my blood pressure went up. To this day that was one of the most delicious Subway turkey sandwiches and Dr. Pepper I’ve had in my entire life lol.

At 12PM, just 12 hours after I gave birth to Lily, I was being wheeled downstairs to go home.

Somewhere in here they tried to get me to pump but no one showed me how to use it and my brain was basically spaghetti at this point. My then husband and Lily’s dad, Joey, drove us home and it was gut wrenching to drive home with the car seat strapped in the back and no baby. 

We went back to our tiny apartment in the foothills of Oceanside California and I took the most glorious shower ever. But I made my mom sit on the toilet the whole time while I showered, just in case I got dizzy… remember the low blood pressure thing? I think my dad and Joey went to the store… but it’s possible that happened when my water broke? But they weren’t there. Once they got back we got back to the apartment; Joey and I, and my parents, got in the car and drove the 30 miles, re an hour drive, down to the naval hospital at Balboa.

I can’t take narcotics. They make me EXTREMELY ill. So I'm rocking this whole postpartum experience purely on regular Advil and Tylenol… because I also can’t have codeine. Lily’s birth taught me to be very religious about when I take my meds. After that, every recovery I’ve had now has alarms up the ass to remind me when to take them. Anyway, that was a very uncomfortable car ride.

To Be Continued…

AHHHHHH this. This whole story is intense and so fucking real. Sharing it all with you brought the smells and memories and emotions and sounds that all came with those days. I had lost a lot of that. There were giant pieces of those days just missing. They are all starting to finally come back thanks to this book. I hope you enjoyed… or well are intrigued? Idk if anyone enjoys reading about peoples emotional pain lol

Anyway, I will release the next one soon!

Much Love,

Taylor Cecelia Brook