Waiting on Oliver.

What I have learned from this experience is that the hardest thing a parent faces is making decisions for our children. Weighing what we feel is right, the facts presented and knowing you will have to live with your decision. People are consistently saying there is no right or wrong answer. Ok—but tell my heart that.  

For reference, yesterday we had our 20-week anatomy scan. Our routine MFM (Maternal Fetal Medicine) doctor was not available, and we had to see a different doctor. We have seen her before when my only risk was my diabetes. I did not not like her, I just observed that she was a give it to you straight person. She lacks empathy and at times I think forgets we are not doctors and some of her terminology goes over my head. In comparison, our routine doctor, Dr. Vinson, I appreciate her more. Dr. Vinson is incredibly soft spoken, she breaks things down, she gets on your level, but she can be emotional. I do not need you to cry when I am trying hard not to cry. During this visit, all his previous named ailments were still there (no water to wine miracle for us).  

• Schizencephaly (cleft brain) 
• Missing radius in both arms  

• Hands in a closed position, turned inwards  
• Measuring 2-3 weeks behind in different areas  

They discovered this visit he also has Lumbosacral Myelomeningocele aka Spina Bifida. There is a small mass in his brain cavity that is indicative of a blood clot, suggesting he must have had a stroke. *Deep breath in…and exhaaaaaale* 

The new doctor came in, sat down, and asked, “Ok how much do you know.”  Me, the control freak, slight OCD person that I am, opens my notebook and I start listing off everything we have been told since Dec. 15^th and everything I have learned regarding that. I then asked, “so what did you see today.” This is when she told me about the Spina Bifida, the stroke and how I really need to consider terminating. Now that I have had time to think about what she has said I truly feel like she was convincing me based off a possibility and not what was happening. She told me that this is a huge risk to me. I asked what factors are we basing this from? She said they are not present now but could. I replied, telling her that right now it is not a present risk and therefore that is not going to be my option.  

From the beginning Jason and I both decided that in our son’s best interest and ours that we would choose to allow him and God to sort out his future. I did not want that burden. I did not want to be the one to decide for him. If I could be told without a doubt he was in pain or he was suffering—absolutely. The decision would be easy. But that cannot be told to me. Therefor we would wait and see. I felt that if he were fighting for tomorrow, I would continue to fight along with him.

For the record, I am pro-choice. It is my opinion that no one person should ever feel entitled to decide for anyone else but themselves. And that is that. I hate how this option is pushed so hard on parents in our position. As if you could just throw it away and start over like nothing ever happened. I also do not judge those parents who decide that is their best option. Truly whatever is best for you and what you can live with is the path you should take.  

After Oliver is born, we opted for palliative care, aka comfort care. I do not want to force a scenario for my own comfort. Another hard decision. Am I making the right decision? Am I giving up? What is right vs what is wrong? Who knows? But both Jason and I have spent many days, weeks and months coming to this decision. I have prayed over this. I ask God every day am I making the right decision. I may never know. But for now, I am at peace.  

3/17/2022 

I wrote this blog back in February. It is now the eve of Trisomy 18 Awareness Day, and I can’t believe I am going to recognize a day that robbed me of so much. In the beginning, I admired parents who were able to list all their child’s ailments, treatments, stats and medications. I thought, how are they able to retain this information? Let alone pronounce them! But let me tell you, you just do.  

When we first received the diagnosis, I was so hesitant to tell people. Even when I did, I never really explained what T18 was or what Oliver had. I did not want people to google it and see the images. All I could imagine was people thinking my baby was some sort of monster. I hate that I even let myself think this. Now, I feel like the more I talk about it, the more I normalize it. I want people to ask questions. I am happy to discuss it. Explain it. Through this experience I have learned that it’s so taboo to talk about pregnancy/infant loss. It’s like society is telling women “Hey girl, your crazy is showing. Put it away.” Or when you tell people, they say “Well you’re young, you can try again!”. What are you even supposed to say to that? My child lived-my child deserves to be recognized. All our angel babies do!  

I am grateful and humbled when I say that I have received the warmest responses to not only Oliver’s diagnosis, but also my blog and my new mission to advocate awareness of Trisomy disorders and pregnancy/infant loss. Thank you, sincerely to all of you who are following our journey, praying, and supporting us as we navigate through the hardest season, I’m sure we will ever face.  

Almost to the end.

Hoping for a Hail Mary.

Writers Block.

…I don’t know what to say. Shocking, I know! I’ve tried to journal. I’ve tried to brainstorm how to put together my thoughts into sentences so that they make some sort of sense. I get nothing.

Our induction has been scheduled. I thought I had time. I thought I had so much more time. I have 2.5 weeks and then it’s over. The hardest part for me to prepare for is no longer having him. It’s been me and him 24/7 for the past 29 weeks. You’ve been an active baby since the beginning. I was told by other pregnant mommas that they’re usually still during the day. Not you! I think that’ll be the saddest part is no longer feeling you move. Your little punches. When you move your whole torso. It freaks me out and gives me heebie jeebies to see your little booty sticking out.

I wish I was cramming to have your room done. Making sure I had enough supplies. But instead while your room is “done” it’s missing so much. No crib. No changing table. You have clothes but I feel like you would have had a closet full and tons of shoes. I was going to make you a sneaker head, whether that was your plan or not. Just one pack of diapers for the “just in case”. No stacks of blankets. Drawers full of soaps or creams. I’m super particular of having stuff on my kitchen counters, but damnit was I looking forward to a counter full of all your stuff ready to go. I’m counting how many days I should take off to grieve you and prepare myself to be back at work. I’d gladly exchange that for the pains of leaving a baby at home while I go to work. At least then I’d still have you.

The second scariest thought I have is who will I be when this is all said and done? What will change about me when I get to the other side? I don’t want to stop being me but I know this will change everything about me.

I recognize the toughest part of my personality is the constant need to be in control, to have everything go according to a plan and when it deviates to have it fixed immediately. Right the wrong. If someone is responsible for the failure that they own up to it. I *think* this might be the lesson I’m supposed to be learning here..??? Not everything goes according to plan and sometimes there is no one or anything to blame. Not every failure calls for someone to be on a chopping block. But could we maybe have taught this at a different expense?! No? Ok.

I can’t point a finger. I can’t fix this. I can’t start over in a sense. I have to accept it. I have to live with it. And I have to forgive myself.

In 2.5 weeks I’m going to be a Mom. Thats just wild to think about. I’m being induced at 32 weeks to better the chances Oliver is born alive. There are some new complications that’s making things a little unpredictable. One is called absent end diastolic flow. Meaning, at times the flow of blood and oxygen from my umbilical cord stops. This is due to his size, he’s very small. He’s trying but it’s not enough. The fear is it’ll stop and then reverse. His body will reject and push it back to me. The medical term is “fetal demise” will occur. We are trying to intervene before that happens. Not too soon but not too late. It’s a tricky game we are playing.

I wish I could do everything to help him. Anything. I truly would do anything. But unfortunately and unbelievably so there is nothing anyone can do. With tears in her eyes, our pediatric cardiologist just kept saying she was so sorry. Sorry she couldn’t fix it after he was born, sorry there was nothing we could do and there was no telling how much time we’d have. I wonder what more she knew besides what she told me. She saw a large hole (VSD) in his tiny little heart. She also saw what is called “Transposition of the greater arteries” (TGA). The artery that supplies blood to the lungs is going to his body and the one for his body was going to his lungs. They’re working too hard to keep up.

I’m so sorry, Oliver. I’m so sorry you are doing so much and there is nothing I can do for you. I’d take this away from you a million times over. My one and only regret is that I couldn’t take this from you and carry it myself.

This may be my last entry for a bit. It’s taken me weeks to get this out. Thanks for following the journey and as always thank you for your continued prayers and well wishes. Our little boy is on his way and I can’t wait to see his perfect sweet face and stare into his eyes. I hope the only feeling he will feel is love from his father and I and nothing else. ♥️

Dreams.

Signs.

What are you trying to tell me?

If you ever thought I was a little bit—weird, quirky—whichever word you have used. Well, I’m about to take you into the deep end so put your floaties on.

 

For as long as I could remember, I’ve experienced what some would call “night terrors”. I’ve also always had extremely vivid dreams that I’ve viewed as signs. I’m a big believer that “other side” can and do interact with us in different ways. 

 

I’ll start with the night terrors, but I’m going to need y’all to hold any judgement until the end and probably even after. HA! My “dark companion” as I’ve come to call him, always appears during these night terrors. I usually fall asleep; a dream will start that is just downright scary and somehow in the process I wake up but I’m not fully awake and I don’t have control of my body. It’s like being paralyzed I would assume. This is when my dark companion will appear. Sometimes over me, next to me or in the doorway. I usually can’t move my head in the direction to really see but I know it’s there. My heart will be racing, I usually start sweating and I’m just super duper scared! You can ask my sister and Jason to validate this, but I usually will scream, a blood curdling scream during these terrors. LOL. This will usually wake me up and snaps me out of it. 

 

Let me get to the relevance here. Prior to learning of Oliver’s condition, I had so many dreams of him. But it was always a huge anticipation of what he’d look like. I think deep down everyone wants this beautiful baby and fears the opposite. Sometimes I would dream that he had a head of grown man or be a girl or be a perfect little boy. Soon after getting his news, I had a night terror. But this one was different than ever before. Started the same, fall asleep, the room appears in my dream but dark and unrecognizable. My dark companion is here, but he’s not standing the same. What I mean by this is I’m not scared of him. He’s not approaching me. He’s standing in the corner of my bedroom next to my bed. I vividly remember saying—you have him, don’t you? He never talked; he’s never talked but I knew what he was trying to tell me. I said—what can I give you to have him normal again? The response was there was nothing but that he’d leave me in exchange for Oliver, but only however he came. I remember saying, I feel like I’ll miss you, but I need you to go. I need my son. And I promise you, for the last 2 months I have yet to have another night terror. This would usually happen 2-3x a week. In a weird way, I miss him. I’ve had these terrors my whole life and it’s always been him. 

 

Many of you know I had a very dear friend pass away in a car accident December 2012. I used to have very vivid dreams with him too. It was acknowledged in these dreams he had passed and was in heaven and only visiting me in dreams as that was the only way to talk. The night he died, 27 min before he died, we were exchanging text messages. You can understand the pain of never having closure from that loss and always yearning for it. I had a dream of him back in 2013 and in this dream, he was visibly getting old. I asked him what was going on and he told me that each time he visited a person in his dream he had to give up time. Since he had a son, he needed to devote his time for him. I told him I completely understand that I’ll always be thinking of him and praying for him. Since then, I’ve never had another dream with him. Until now. I dreamt his sister came to my home here in Washington and told me Richie wanted to visit and wanted to make sure I’d be home. Again, in this dream I knew he had passed but it didn’t seem out of ordinary, and I said of course. Tell him to come by whenever. There was another knock on the door, I open the door and Richie was standing with his back towards the door. He turned around and said here’s your baby, he’s a boy! You’re going to be so happy Jenn. I took the baby from his arms and was just in awe with how beautiful he was that I couldn’t even take my eyes off him. I looked up and Richie was backing away. I had so much to say but I didn’t know what to do first—look at my baby or talk to him. He said I don’t have time I have to go. Be happy, Jenn. And just like that he was gone. 

 

Another dream I had; I had just given birth. They were bringing me back to my room and when I walked in there was a chair in the middle of the room. It was turned away from me. Slowly it turned around and it was my grandpa Raul. My mother’s father who passed away in the early 2000’s. Naturally I was confused. He said, your son is here. He’s been with me. He’s fine. Again, Oliver was beautifully perfect.

 

I’ve always trusted and believed in my dreams as signs. When I started having all these dreams of these people I cared and loved for having my son I felt like it was the other side telling me to have faith. The test would be wrong, and Oliver would be perfect. Naturally when the final diagnosis was given, I felt betrayed by a system I had trusted in for so long. How could these people who I loved could lie to me? I vowed to never trust in them again. That I was silly to even think something so bizarre would be anything but a mind trick. A lie. 

 

I journal a lot. I have so many notebooks that I keep at work or at home. If I have a thought, if I see a quote, if I have a “vision”,I write it down as soon as possible so I can later re-read it and analyze it. I’ve gone back and re-read these dreams and it’s made sense to me now. I misinterpreted them. My son was with these people. He has been cared over by them. Even my dark companion, who I’ve feared for so long. My son may never meet me, but I find solace that the first face he sees is God’s. That he’ll meet my best friend Richie, my grandfather Raul, my uncle Louie and Arturo, his grandfather Hoot and his precious cousin Baby Hoot. All the puppy dogs and kitties we have loved and all our friends and family who have left us. They had him before me to protect him and to love him. They will have him even after, forever. While I hate this truth, there is no other second best. He was always healed and beautiful in my dreamsbecause I know when you get to heaven all your pain and suffering will be gone.

1/27/2022