Lily was turning 2 when we decided we would start trying to get pregnant again. Something Nick was hesitant about but we wanted two kids and close in age. We tried forcing potty training because why would anyone want two babies in diapers at once!? Pretty ironic now, huh?
A month after her birthday we found out we were pregnant with Weston. All tests came back great and we were thrilled to be having a baby boy. Our 20w ultrasound even came back normal. It wasn’t until the third trimester when I felt I was bigger than I should have been. That’s when things started to go downhill. I had severe Polyhydramnios. Lots of extra amniotic fluid.
We were transferred to the high risk specialists at UVM and saw many doctors every week. No one had answers. The thought was Weston would come out and he’d be fine. They said sometimes women just have extra fluid.
I gave birth, terrified something was going to be wrong. But nothing. No one said anything. He cried, he was breathing, the doctors looked him over and passed him off to me. How amazing all that stress for weeks of something being wrong and now nothing. I have my little boy and our family was complete.
Four hours after giving birth I was nursing Weston and he started to turn blue. The nurse was in the room and picked him up. His color came back but she wanted to check his oxygen level just to be safe. That was the last time I saw him that day. I ended up passing out in the bathroom and needing a blood transfusion while he was in the NICU.
All the machines, uncertainties, other babies coming and going and still having zero answers. The doctors realized Weston was having seizures. He was put on a few different medications. They ended up hiding the symptoms but the seizures were still happening in his brain. He just slept. Slept and slept.
I was discharged and able to go home while Weston was still in the NICU. The first drive home, you know the exciting but scary one where you sit in the back with your newborn and make your husband drive 10mph under the speed limit and all of a sudden you’re terrified to be in the car driving because of the new precious cargo that’s on board. We didn’t have that. I stared out my window sobbing. Not knowing what was happening, why it was happening, why me? What did I do so wrong to deserve this?
Other babies came and went. They graduated and our fighter was still there, no answers, looking like a little old man with his glue filled hair from all the probes on his head. I can still hear the sounds of all the monitors. The alarms going off. Getting used to which alarm was for my baby and which was for others. Which was the oxygen and what all the numbers meant. Wondering why the alarm went off and why a nurse wasn’t there the second it went off.
The nurses, oh the nursers were amazing. They snuggled him when i couldn’t be there, they didn’t get frustrated when we called and checked in, they loved our guy and made me feel comfortable, as comfortable as you can, leaving your child. They explained everything. They encouraged us to do what felt best but also didn’t force me to do anything I didn’t want to.
There were itty bitty hand knit hats left by Weston’s crib and hand made cloth Halloween costumes someone made. It was fun being able to celebrate a holiday with him even if it was in the NICU. Lily loved seeing pictures of him “dressed up”. We still have the costume and hats and so many other things. They let us sneak in a stuffed animal dinosaur for him to snuggle. Lily has slept with it every single night for almost two years now.
A couple nurses made a special box that had a hair clipping, hand/footprints, the bottle he used, the size diaper he wore and even a special charm with his fingerprint and his birthstone.
Although, one nurse in particular brought me from feeling my lowest to whatever is worse than that. I had just finished pumping and was cold so I put my sweater back on. I was visiting alone and at a place where I felt comfortable holding my own child and even changing his diaper because for the first week I was terrified, of everything. Well, this nurse for whatever reason asked me why I was leaving so soon. It was her tone. The mom behind us was ALWAYS with her child. I felt like a failure. She was there when I got there and there when I left. But through our time in the nicu I learned that was their only child and she quit her job. She essentially had more time to be there. Not that she didn’t have other obligations but I did have a toddler at home that also needed me and to be honest, I needed her.
Anyway, this nurse. She made me feel like the worst mom. I was simply cold but now I questioned if all the nurses thought I was awful because I didn’t spend enough time with Weston. Yeah I probably could’ve spent more time and I have regrets now of not being with him more but in those moments, it was hard. i was so scared of him dying in my arms because i would forever think i could have or should have saved him. My mental health needed breaks, I needed to be able to function for my family.
Mind you while all this was happening, our little rockstar lily was home wondering when mommy, daddy and brother would be home. We came and went as each day passed. Trying to spend enough time with both babies and having so much mom guilt. Lily finally was able to come visit because the nurses put us in a special room since children weren’t allowed in the NICU.
Lily wasn’t sure about this new little brother with tubes attached to his face. She was hesitant to go near him but eventually held and snuggled and kissed him every time she saw him. Without talking or playing or being with each other that often they grew a bond that is unexplainable. She talks to him everyday and night. He’s always apart of everything she/we do.
So many friends and family reached out. We didn’t know what we needed but I knew I didn’t want to be bombarded. Just checked on so I knew I had support if I needed it. Later, I found out friends were making decisions for us such as telling people we wouldn’t want meals brought to us. Which really would have been helpful since we were driving so much back and forth to the hospital the last thing I wanted to do was cook.
My best advice is to ask the person. Even if it takes days for them to respond, wait for the response before making your own judgement call.
Family wanted to visit. Everyone wanted to meet their new nephew, cousin, grandson. We didn’t tell anyone that he would die before he was a month old. We didn’t tell anyone how serious things were. I didn’t want anyone to visit. I didn’t want to be around anyone. I didn’t want to share time with him. I didn’t want anyone asking the doctors or nurses questions.
My best friend, Lily’s godmother, already had plans to visit us one weekend after Wes was born. She said she wouldn’t come if we needed space but I wanted her to meet him. I wanted her to be his godmother. She came and held him and accepted her second role as a godmother to our babes and i couldn’t be more thankful. She was the only person besides my husband that it felt right having hold Weston. She loves him as if he were her own.
So, inevitably some family did come. I wasn’t for it and still regret letting it happen but it did. It’s hard to be going through something traumatic, learning your child and what’s good and bad and what could cause a seizure and then having someone else come in and have to explain it all to them. It’s exhausting and I didn’t want to. I didn’t want anyone there. I was selfish and I’m okay with that. He was touched in multiple locations at one time which caused too much stimulation and they would say look he’s smiling at us and my heart sank further into my stomach because no it wasn’t a smile, it was a seizure. I wanted to scream. Every inch on my body tightened. I was miserable the entire time. Imagine that. I’m with my son, knowing I only had seconds, minutes, or days left with him and I had to share it with someone I didn’t want to and watch them ooooo and ahhhh thinking he was smiling at them. When I say I was miserable it’s really an understatement.
I should have said something but I had no energy. Think about pushing out a baby, running a marathon, studying and taking the SATs all in one day. I was physically, mentally and emotionally drained. I also didn’t want to make them feel bad because it was my fault for not telling them not to touch him.
I remember the day like it was yesterday. Sitting in the room, Nick next to me and the doctors across the table. Nick and I had communicated with eachother better than ever before during this time. We knew some day we were going to need to make decisions, but when?
That day nick told the doctors just to tell us exactly what they thought. So it was continue feeding Weston and he could live for a little while but never meet any milestones or really have a fulfilling life, which we thought would be selfish. Or, take the feeding tube out and wait. Which sounded horrific.
I didn’t like either option. I wanted my beautiful baby boy who I only heard cry once because he was so doped up on meds to miraculously get better and come home with me. That would never happen. I knew it wouldn’t the doctors knew it wouldn’t but i wanted it with all my being.
We chose option 2 and the doctors agreed.
They said it would take a week to two weeks before he would pass. He passed the night we took the tube out. Just shows that the feeding tube was literally the only thing that was keeping him alive. I can remember the gasps and was fearful to hold him because I didn’t want him to die in my arms. I hate that I felt that way. I’m his mom, I should have been comforting him. Luckily, nick was amazing and held him the entire night. I can remember listening to his last breath and Nick calling a nurse in at 1am to confirm his death. We had to decide to cremate or bury Weston. We had to discuss funeral services and how to tell family and friends.
Twenty six years old and I was standing in a dark room with my husband and lifeless son. Shocked. I knew it was going to happen. They called us and told us to come in late that night because his breathing was slowing down. I had prepared myself the best I could. Writing that is bizarre. How do you prepare for your child to die?! Nick and I talked a lot. We wanted what was best for Weston. We didn’t want him to suffer anymore. But still, in those last moments walking through the halls just like every time before, leaving without my child, I cried. This time i cried harder knowing I wasn’t coming back. I was forever leaving without my baby.
We decided to cremate Weston. We didn’t know where we would end up in life so we wanted to make sure we had him with us. I’ve had thoughts about if we buried him would he be cold or scared or would someone dig him up (because that happens often?) the craziest things I came up with and still think about. Daily internal battles. Wishing I had a specific space to go and talk to him even though we constantly talk to him but just my own space. Like people do when they go to the cemetery. Trying to figure out what I need has been an uphill battle.
Hours after Weston passed, all of nicks coworkers surrounded us in our home. Friends, family, neighbors, from many states reached out. I was numb. I was fearful of something happening to Lily. Anytime lily coughed or gasped I jumped, i still do.
I went back to work and I wished I had given my supervisor permission to share what happened but then again I didn’t want everyone knowing. However, the first day I went back to work someone walked by me. I recognized her because she walked by my desk often. She knew I was pregnant. She stopped to ask me how I was and how the baby was.
How’s the baby… What do I say? I was star struck. How could I not have thought of an answer to such an obvious question. I told her he had passed away. I kid you not she looked at me, turned and walked away. She didn’t say a single word. Just walked away. I later got an email from her saying how horrible she felt and she didn’t want to cry in front of me so she walked away. I wasn’t mad she asked. It’s such a normal thing to ask. I knew it would make people uncomfortable but I didn’t know what else to say. Which leads me to the next topic.
How many children do you have? Well, we had a miscarriage before lily, then we had lily and then Weston. After having lily I always said 1. After having Weston I said 2. Now that he has died I still have 2 children but I hate the follow up of, how old are they? Do you say he WOULD HAVE been or do you say he is. So many questions and different answers and ways of thinking. It really depends on my mood and who I’m talking to but I have made peace with being able to talk about Weston and tell people he died. Even complete strangers. I enjoy people asking questions because it keeps him alive and the small amount of memories we have won’t fade. Which is an absolute fear of mine.
Weston’s nursery was already decorated and ready for him. I kept the door closed. I held my breath every time i walked by it, which was everyday multiple times a day. I didn’t want anyone going in it. When we decided to sell our house I hated people had to go in there and look around.
I was in therapy already so it easily transitioned to dealing with grief. Which I did not do. I was physically present but not emotionally. I was put on depression medication. Then the medication dose was increased. I was told by friends I wasn’t depressed and asked why I was on meds.
I couldn’t cope or process because I was so numb. I drank so I could get the courage to go into his nursery. I drank to cancel out the medication and decided to get off of them all together because clearly they weren’t working for me.
The panic attacks continued at night. The yearning to have my baby waking me up at all hours to cluster feed continued. I deleted everyone on social media who had a new baby or was pregnant.
Did I mention our friend, nicks coworker’s wife, had a baby the same day, the same hospital AND brought her home. I felt awful but I couldn’t get myself to talk to her, let alone see her and her baby for a long time.
I began working out and trying to get myself in a better place. Lily 100% helped me through this. She talks to Weston every night during our prayers and looks to the sky for the moon. She talks about him and constantly wishes he was in our home so she could snuggle him.
Just the other night the moon was so bright, lily, no matter who is around screams to me that the moon is out or just plain yells HI BROTHER WESTON. Well, she said mommy I wish he was here in our house. I wish he could come down here with us.
It breaks my heart that an almost four year old has to deal with this grief but she does it with such grace and I admire her more than she will ever know.
A month after Weston passed we got all the results back. Weston had a genetic disorder, KCNT1. Rare. Nick was the carrier and had no idea. Nothing would have changed if we knew sooner. There is nothing we could have done differently.
We were told lily could have it like nick with no symptoms but a carrier. We could test her and maybe eventually we will when she decides if she wants babies of her own but for now I don’t want to stress about it since it wouldnt change anything in our day to day lives.
We were told if we wanted more babies we could try on our own, knowing this could happen again. Or we could go through IVF to specifically test for the gene.
Thinking about having another baby a month after our son died!? Seems crazy, right? Going through IVF, don’t people usually end up with multiples!?