Unexpected.

Whew-    well, life throws curve balls sometimes. In this case, it wasn’t at me, but at a close friend. Could easily have been me, or could be me in the future. Makes me endlessly grateful for a beautiful, healthy baby girl who will likely live to see my passing instead of the other way around.

My friend Rachel was working side by side with me during my pregnancy at the restaurant. We grew very close, as she was my right hand woman. I might have written about her in here, i dont remember. She’s younger than me but we had a little sister-big sister relationship. She and her mom came to see me lots of times when I first had Lucy. She is 20 and got engaged to her boyfriend, and shortly after that, got pregnant. Her found out she was having a girl, and talked to me a lot about that. She is young but never acted like she needed any advice on what to do with this pregnancy and this expected baby. I went to her shower–holy cow. It was HUGE and lovely. She got so much stuff for Scarlet! Her name was annouced in the shower invite. Scarlet Marie. I mean, this girl is young but she has a good head on her shoulders. Her and her boyfriend ended up getting married before the baby was born, in the courts, and their wedding ceremony is still planned for this coming summer. So, she’s married now, and her husband is fantastic. Very supportive. They are both in college, so they moved a couple hours away from me for school. She text me continuously during the pregnancy. She sent me the ultrasound pics. We talked about pregnancy, LABOR especially, what to expect, etc. She called when she got the news that she would have a set induction date. She was due on thanksgiving but would be induced the Sunday before. I asked why- because I am not really for a lot of interventions when it comes to mommy-baby stuff. Rachel was so excited to be induced though beccause like many moms, she was anxious for the pregnancy part to be over and ready to hold her baby girl. She said she was being induced because she was considered "high risk" because some of her blood work came back indicating a chance that her baby could have Trisomy 18, and i quote her, "they told me most babies dont live past the first week", so they want to induce. She sort of said it was nothing and moved on to the excitement of knowing she would be holding her baby soon!!!!!!! What she said about high risk didnt even register with me. She dismissed it and I didnt even remember that she had said it! So many women are labeled high risk in their pregnancies and its not always that big of a deal- or maybe you are dealing with the unknown and just taking precautions. Thats what I thought this was.

Scarlet Marie was born on the Tuesday before thanksgiving, at 3:03am, weighing about 5 pounds. She was sent to the NICU that day because she needed help breathing when she was sleeping, according to Rachel. Her birth weight was low, clearly, but not actually considered dangerously low or anything. A little while later, while in the NICU, they realized there were more things wrong with Scarlet than just the breathing trouble (though Rachel never talked to me about these things- it seemed as if she thought everything was fine with Scarlet except minor things). Rachel started sending me pictures, and said Scarlet was doing AWESOME!!!!! I could see that Scarlet had a cleft lip and many tubes up her nose and mouth. I didnt hear from Rachel for about a day, and I was traveling to Michigan during this time and not around my phone. I heard from another friend, in a frantic message, that Scarlet had been given a scary diagnosis. I couldn’t believe it- because Rachel said she was in the NICU for breathing help but I never thought it was anything more than that (except the cleft lip i noticed). Later, they annouced that the baby was given the official diagnosis of Trisomy 18. I called Rachel right away. I saw on facebook they had asked for privacy but I thought I’d just give it a shot- and she would likely ignore her phone for a while. But actually she responded right away. She said thanks for the message I left her, which had said I was praying, etc etc etc. Rachel said the baby was doing SO well, off oxygen, on a feeding tube, but able to drink some breast milk from a bottle. She was producing a lot of milk and pumping like crazy, and the baby was improving after recieving breastmilk. She never said one sad thing about the baby or the diagnosis. But I was crying. I didn’t get it. I researched the shit out of trisomy 18. Most babies die. Thats just the cut and dry about it. (please note me if you have any experience with this). There is really no other way to put this, but I am still a little confused. Because I feel sad, and I feel hopeless. I feel like my friend is going to have to bury her daughter, AT SOME POINT, and I dont know when and no one does…..but i dont see how its possible for a normal life with Trisomy 18. If you dont know- this diagnosis means that the baby has 3 chromosome 18’s where there should only be 2. It could be the full extra chromosome, or just part of an extra one, or even a mosaic (which is the the most rare and best prognosis). I dont know which of the 3 Scarlet has, but I know she is doing well. Because they are sending her home in a few days, and she doesnt need any oxygen. She is on a feeding system of some bottles in combo with a feeding tube. I believe she will be sent home with that regime. Rachel and her husband seem overwhelmingly postive about the whole thing. I am thinking back to when I first had Lucy. When we were in the hispital with her, it was a WHIRLWIND. I didnt know what was going on. It was hard to tell what part of what the doctors were saying was serious and what part was just normal procedure. I couldnt tell my ass from a hole in the ground. I couldnt take a shower without crying, and my baby with healthy (as far as i knew, but she might as well not have been for all I knew- i didnt know what was going on around me really!). Its such a crazy crazy crazy time. Add a sick baby into the mix, with a scary, unknown diagnosis, and I dont know how I would be reacting. maybe part of them is in denial. Maybe part of them doesnt know whats happening right now. Maybe another part of them realizes fully that they wont have forever with this baby girl, and they are cherishing each moment with her and focusing on the positives. I bet its a combination of all 3 and some others. Because I dont know what its like to have a sick baby. I dont know what its like to carry a baby for 9 months, prepare the nursery and get all these gifts, and then give birth in a somewhat traumatic situation only to be told that your baby has a genetic disorder thats not compatible with life, and could live, but will struggle. Babies with trisomy 18 who survive past the first year will never live independently into adulthood. Rachel hasnt said that to me, and i dont know if anyones said that to her. Im sure she has googled the fuck out of this but maybe shes not like me, and maybe she hasnt. She is handling this in her own way and I cant relate to it. I just want to be there for her.

My heart is breaking for them but I feel like theirs isnt–and so mine shouldnt be either. I’m going to figure out what I should do to help her through this.