u/KillerUni39

Lately I find myself having memories from my pregnancy and they are so bittersweet and catch me off guard. My mind wanders so the simple happy moments when I would be at my weekly scans and he would roll away from the US tech❤️‍🩹 I would always feel it coming and we would laugh because he did this from the very beginning and was always such a active little boy. But during those happy memories I’m hit with deep sadness and my heart breaks all over again. My son has been gone 3 months this week. I’m still struggling with this reality that I removed my tubes and now I know I will never get a chance to have another baby💔. How do we accept this? Why do I feel like I’m never going to accept a choice I made with so much confidence that my son wasn’t going to die.

My son has been gone for 3 months on Thursday and yesterday was unbelievably hard. I took my older kids to Costco and it was packed but that wasn’t the issue… it was a sea of mom’s carrying their little babies all under 6 months, I told my kids I reached my limit and we had to leave so we finished and got out of there, Walmart was no different and I was numb at this point on auto pilot it felt like😢. When we got home I cried for a hour straight. I hate this. I’m angry at my life and what it’s become.. I miss Dominic every single day and I hate this version of myself. I honestly don’t know if I’ll ever be happy seeing another baby again.

When my son passed away we looked into having him transported back to our city because I wasn’t leaving him at BC woman’s and return back to Okanagan… we looked into our funeral home for this service but the cost was a lot and I didn’t want to spend that so I asked if we could bring him home with us which we could with some paper work and we did just that all thanks to our local director who got this started and finished by lunch time. I wasn’t apart of this step but my husband and his dad had to go and buy a cooler…
From there we started the process and made our way home with my son only truck driven by my father in law. I will always be thankful for him doing this for our family knowing it’s what we needed to do. Fast forward 2 months and he came to me and “just throwing it out there” and asked if I had Dominic’s things in a box and suggested I use the cooler to store his belongings, I know this didn’t come from a bad place but I feel gutted because a few days prior I went into his house and the room where his things are now and I was sitting between his car seat and this coolers and I was immediately filled with anger and tears that I couldn’t stop… this is what you were supposed to come home in but this was what you came home in instead.. I don’t know if he understands that emotional feeling. I told him no and I feel his searching for a way to make it meaningful since I’ve said it’s not to be used and it just stays as is
Am I wrong?

Has anyone in BC Canada applied to have an independent review done of care after NICU loss.
I’m wondering if anyone else has done this and if it helped with answers, closure and accountability. My goal isn’t to sue or anything along those lines just to get answers and accountability. Long story short I believe there was a lack of communication in my sons care as he was a very complex baby with Noonan syndrome with HCM LV and kidney problems so his care team was carefully balancing input/output around the clock. His RT team who was on that night were very familiar with his baselines but a cardio dr on this particular evening decided to put him on Albumin which makes sense for babies just not my son. We were fighting for Lasixs and they were trying to get him on a Jet Vent which ended up happening the next day when the normal teams were back on shift. My problem is we were fighting to by time to get him on a new treatment and we lost our window and my gut from that night on had been on this Albumin! I just want to be a voice for my son and for future babies like him. Any advice would be greatly appreciated

Long post.

5 weeks ago today we said Goodbye to our sweet boy Dominic.. he was born March 19th after a very difficult pregnancy both emotionally and physically. We learned he had Noonans syndrome de novo mutation PTPn11 T468m at around 20 weeks and I was going to go through with TFMR because of how uncertain his life looked, we arrive in Vancouver and were supposed to be at our appointment shortly after 9am but I sat in our hotel room staring out into the harbour in silence leaving my husband to sleep while I silently decided I couldn’t go through with it. He woke up and said PJ’s for the drive home? We packed our things and left. That was when we decided we were going to give our Dominic the fighting chance. From there on things were progressing in my pregnancy from to much fluid to my whole body retaining excess fluid but normal for my pregnancies just earlier and a lot more. Around 27 weeks baby was measuring over the 97th percentile and my stomach was measuring 10 weeks ahead and that stayed steady until I reached 31 weeks and I was measuring still quite far ahead but it slowed down but that same week we learned Dominic Hypertrophic cardiomyopathy (HCM) which I was very scared of even before we learned about it but they said it was mild/borderline which gave me some hope and that day they told me I would need to relocate in a couple weeks for delivery will anticipation we would would be expecting early c section if his condition showed any signs we needed to. I was hesitant to leave my town that early but I continued with my weekly scans in my city for 2 more weeks when they said I needed to relocate that week which I did without question and continued my scans in Vancouver BC woman’s hospital, at 36w4d his condition changed and we had to get him out 2 days later. March 19th was both a very exciting day but it also scary… Dominic was having breathing complications which is common with Noonans syndrome and we weren’t to concerned until Cardio did the fetal echo 3 ish days later and we learned his HCM had progressed again and we were given 50% chance he would make it… they started him on beta blockers and continued to monitor and treat him accordingly, there is a drug that has been used on babies like him and it’s still in the early phase but his variant it’s only been tested on mice and based off his lymphatic system and heart he was a good candidate to move forward to get him started in this medication… but his body was getting worse and time was not on our side 💔 they were trying there hardest to fast track this through compassion care and ethics board but again time was not on our side and he continued to get worse to the point where even if the next day we got approval(we would have) his body wouldn’t have been able to absorb it in order for it to do its job and his path forward wasn’t one or recovery or life without severe complications due to what his body was going through. My husband and I had to make a choice no parent should ever make on April 6th to take our sweet boy Dominic off life support💔💔. Immediate family made the travel to say their goodbyes and some stayed for support. I can’t stop thinking what if they were wrong? What if we just said keep fighting… would he have made it? Were they wrong thinking he wouldn’t have quality of life? What if I just said keep fighting… I know they knew because it was a multi system complications they were fighting and because of his Noonans syndrome and how their bodies are so unique in how they function they felt they gave us the most likely outcomes with what his body was going through. I just miss him so much and my heart is so heavy everyday and some days I can’t even cry it’s just a lump in the back of my throat while feeling sick to my stomach. I just wish we had a different story 💔😭

I’m sure asking this alone should probably give me my answer but I don’t know.

When did you feel you needed to talk to someone? I felt ok until recently and now I’m starting to feel like I’m drowning in grief … or is this normal part of the “process”? I find I can sleep fine but eating can be hard most times I have to eat right at a certain time or I feel guilty and sick to my stomach eating. Crying is becoming constantly throughout my days and I’m trying to hold it together for my older daughters who 10 & 15 who have been so kind and loving trying to navigate this as well and always checking in on me🥺

My husband he process’s his emotions way differently then I do and yesterday we got into a small argument about how I should reach out to the numerous numbers and services that I’ve been given because he can’t help me (but I tell him it’s all I’m craving is my kids and him to get me through the other side of this) and he something that triggered me even more and now today I’m even worse then before. I know I’m spiralling and I know my answer but I guess I’m just trying to see if I’m wrong for not wanting help. We said goodbye to our son only 18 days old April 6th🦋🩵