A newbie here who is grieving for her little boy

[dylansmommy2816]

Warning- Living Child Mentioned


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I'm not sure how to even go about this, but I'm seeking support from those who have lost a child. My baby boy was born sleeping at 24 weeks and I am devastated. I don't really know if I can intro properly because I can barely even formulate words. I will share my story with anyone who wants to hear it, if you tell me this is the place to do so. Today is the one week anniversary of his death. I used to be a member of the bump years ago with my first healthy boy who is now 18 months old. If anyone can give me some guidance about how this forum works, I would appreciate it. My goal is not to offend anyone if there is protocol. My heart goes out to all of you who are grieving as well. 

I just miss my little boy. 

[rslh10]

dylansmommy2816 I am so very sorry for the loss of your sweet son. The pain is probably very very overwhelming to you currently. So many ((hugs)) to you, sweet friend.

Today is the 7 week anniversary of when we lost my sweet Kenley at 38+4 to a hyper coiled cord/blood clot accident. The days are just as long but the pain hurts in a different way. We all know the pain and confusion you are feeling. You are not alone in your suffering.

This is the place to share his story. Please feel free to share as much or as little as you need/want, whenever you want. The board isn't very active but these women are here when you need them. I check this board every day, and you are more than welcome to PM me if you would like to talk about anything.

I look forward to hearing about your sweet sons journey. More (((hugs))) and strength.

[dylansmommy2816]

Warning: this is long but I feel like I want someone to read this story I wrote about baby Dylan, the boy I never knew. Even if no one reads this, its out there in the abyss, and that's enough. If anyone is offended by my story, again I deeply apologize. It is disturbing for me to even write about.

Rslh10 (i dont know how to tag you, sorry), thank you so much for your kind words. I am so deeply sorry for the loss of your beautiful daughter. She's an angel too beautiful for this earth.

My son was discovered at 24 weeks to have Hypoplastic Left Heart Syndrome. This is a very rare heart defect with a terrible prognosis and it angers me so much how many doctors and sonographers assured me that I was carrying a healthy pregnancy.

It wasn't until I was sent to MFM for a very detailed anatomy scan due to something totally unrelated and benign (a uterine synechia, fibrous bands that sometimes just randomly occur). She said it was no rush and they may not have an opening for a week or 2 because they are super busy. I was freaked out, but figured it would be fine. They said the earliest they could get me in was February 3rd. I would be 23 weeks and 3 days pregnant. I said fine, and left it at that. Again, more blissful ignorance. By this time my husband and I had picked out a name for our son, Dylan Alexander. We were so psyched about the name and I even bought him a tiny newborn onesie that said “greatest little brother ever”. It was the only thing I ever bought for baby Dylan. We had lots of hand me downs, but I wanted one thing for him to wear from his mama bought just for him.

February 3rd came, and I was nervous. I can’t explain why. I went in for my ultrasound alone. I didn’t bring my husband or my mother, because I thought there was no reason to. Totally routine. The first tech did a very detailed scan, pointing out his fingers, toes, little face, nose. But then she stopped at the heart and got very quiet. “Can’t pick up a good measurement! Sorry! Could you maybe turn over?” Then she took more and more pictures. So many more pictures. Something changed inside me and I began to get very scared. She said no more words. She said that a doctor would come back and I wiped the warm jelly off my belly. A doctor came in, stone faced, and shook my hand, introducing herself. I immediately hated this woman even though she did nothing wrong. I said “should I be worried?” She did not answer the question. “We just need a few more pictures.” That was it. She then took more and more pictures. I was in there for several hours. She then left the room again. “I’m scared”, I begged her.

She smiled gently and sadly. She took my hand and began to speak. “What we are finding right now is that your baby’s left and right side of the heart are not measuring evenly. At this gestation, they should be equal. I am so sorry – I tried everything I could to make them measure the same. I even measured the axis to see if he may be laying wrong. But they are just not equal. I am so sorry.” “What does this mean? I asked?” She said we may be looking at a heart anomaly that will require surgery after birth. Surgery after birth. Surgery after birth. Those words echoed in my head. “It may be something called hypoplastic left heart syndrome.” I nearly fainted. “But he’ll survive, right?” She didn’t answer my question, but looked at me kindly and handed me tissues as I began to weep. She then said “I’m sending you to Johns Hopkins Hospital to have a fetal echocardiogram to confirm these findings. They have much more advanced technology than we do.” There it was, a glimmer of hope. Maybe it was all a mistake!! “Is there any way this could be wrong?” I asked. She shook her head and said “I’m so sorry but I highly doubt it.”

The next few days were a blur. I sat silently holding my mom’s hand while the fetal echo was performed. We told them we did not want to look at our baby on the screen. We chatted about other things and I tried to be strong. The tech performed an hour long exam, left, and brought back a male pediatric cardiologist. He took even more pictures. He said “ok, let’s go talk”. I barely heard a word he said but he confirmed the findings. Our baby had coarctation of the aorta, and unfortunately had a hypoplastic left ventricle which would never be able to pump blood correctly. The only thing he could guarantee was that our baby would indeed suffer. He would be whisked away after birth for immediate open heart surgery, that he had a small chance of surviving. He would not breastfeed. He would need a feeding tube. HLHS is almost incompatible with life completely. He would need 3 stages of surgeries all before he turned 4 years old. He had a 70% chance of living to adulthood. I would outlive this child. It would also only be palliative care, never curative. His life would be fraught with pain, fear, doctors prodding him and dragging him screaming away from his mother. I had already made up my mind that this was never good enough for any child of mine. He was a doctor and was trying to be compassionate and open our choices up for us and sell the only thing he had to peddle, his expertise with his profession. I said “what about termination? Do I have time?” He looked at me sadly and said “yes that is an option. You will need to ask your OB. I’m guessing they want to get you in ASAP for it. Your state allows a few more days before their cut off time.” I just wanted to let my dear son go without ever having to cry or suffer.

The day at my OB is something I can’t write about. All I can say is I sat in a chair wailing. My procedure was done Monday. It will forever traumatize me, but I begged God earlier that day to give me all the pain so Dylan wouldn't feel it. I think I got more than my share.I held my husband and my mom’s hand and cried and cried. I told everyone who would listen that I wanted to die. Just kill me. I delivered Dylan sleeping Tuesday evening. He felt so small coming out, like a little baby doll too beautiful for this world. That part didn’t hurt and I pushed for maybe 30 seconds. They took him away because I’m too cowardly to look at him. I didn’t want to know what he looked like. If he looked like me with dark hair? If he looked like my husband with blonde? After it was over I waited 8 hours for the epidural to wear off before I was sent home.

I'm currently lactating for a child I longed to nurse, but knew I never could. Please pray for me that I can survive this pain.

Again, I'm sorry for everyone's loss and apologize if any of this offends someone. That is the last thing I ever want, but I just had to get this out there.

[snowbigdeal]

Thank you for sharing your story, and I'm so sorry for the loss of your sweet Dylan.

My son was stillborn at 33 weeks, almost two years ago now. Allow yourself to grieve as long as you need to and however you need to. It is also okay to allow yourself to feel happy sometimes, if you have some happy memories from your time with Dylan. The love you carried (and still carry) is apparent in your text, and is a beautiful thing. And please feel free to come share anything you would like here, you are absolutely not offending anyone.

[murrt]

I'm so sorry dylansmommy2816,

I terminated for medical reasons at 17 weeks. I can relate to so much of your story. My baby had great scans and ultrasounds and then the NIPT test came back indicating trisomy. An amnio a few days later confirmed and a few days later, we terminated the pregnancy. It was by far the worst thing my husband and I have ever had to go through and we will never be the same. DH and I told our OB and MFM that we did not want to know the baby's sex, name it, or keep it's remains. At the time, I thought it would be easier. But now I know that it's not easier and it's not harder, because either way, it was my baby, whether I named it or saw it or not, and I had to make the choice to let it go.

Two things someone said to me helped me during this time: "Don't ever question your decision. You wanted that baby more than anyone else in the world." and, "You chose to take your baby's pain so he didn't have to feel it." Both of those things rung true to me and have kept me somewhat sane.

I also found comfort from the women on aheartbreakingchoice dot com.

I found it helpful to write it all out, and talk about it in a safe place. I knew some people wouldn't understand my decision, so I found the places where I could talk and sought out support from those people.

Finally, therapy. Therapy has been a god-send. I've done a special kind of therapy called the Emotional Freedom Technique (EFT). It involves tapping specific pressure points in the body while you talk about your experience. It sounds crazy, but it does work. It's used most for people with trauma and PTSD and I thank God every day I found my way to a therapist that specializes in it. She didn't make the pain go away, but she made the days bearable again.

There's another friend from this board who had a TFMR who I'm going to send a PM to and see if she can come over and lend some support as well. I hesitate to page her incase she's having a bad day.

Like rslh10, said, this isn't a hugely active board, but everyone is there for each other whenever you need something.

GIANT HUGS!

[dylansmommy2816]

I can't even express the healing that your words have, murrt. I'll learn to tag someday.

Thank you so much for sharing. I'll hold you in my heart.

[rslh10]

dylansmommy2816- to tag, just type the @ symbol then type the username you wanna tag.

I'm so sorry you were in that situation. You chose what was right for you and so that your son didn't suffer. I'm so sorry for your loss. Your little boy knew nothing but love from you and your husband.

Re: your milk coming in-- I used cabbage leaves. It really really took the swelling and discomfort down. It was such a hard time when my milk came in because all I wanted to do was feed my sweet Girl. I was unable in my previous pregnancy so I just wanted this pregnancy to be different.

Sending you more ((hugs)).

[peaseblossom55]

dylansmommy2816, I am so so sorry to hear your story. It breaks my heart thinking about your story and Dylan.

I too TFMR at the end of August. Our scans went well and our dna test came back low risk for everything and we found out we were having a girl. Our 21 week scan told us a different story. We discovered she had some brain abnormalities and ones in her heart. There were also some other issues they could not be sure of. We did an amnio and it told us she had triploidy. This was not compatible with life and we made the heart breaking decision not to let her suffer one moment and to take on that suffering and heart ache. We did a full labor and delivery, got to see her and hold her. We were so lucky to be supported by wonderful doctors, family and staff.

I've also found a few good websites as well including endingawantedpregnancy.com/ . I am so so sorry about your loss. Sending you continued hugs and love.

[happyin14]

Sending love... My story is quite different but I wanted to send love. Please be easy on yourself. My son also died without pain and sickness and I am eternally grateful. It does help a tiny bit, eventually.

I'm so sorry you had to make that choice. Dylan knows how much you love him. I am certain.

[dylansmommy2816]

@rshl10 and peaseblossom55, thank you again for sharing your kind and wise advise as well as your heartbreaking stories. I've actually just visited those two websites and had a good cry. Peace be with you.

[dylansmommy2816]

happyin14, also thank you for your warmth and kindness. I am so sorry you had to go through this as well.

[iheartbroccoli]

dylansmommy2816, I'm so, so sorry for your loss. Thank you for sharing your story with us, I cried while reading.

I'm so sorry for the decision you had to make, but you made the best choice for you and your son. We took our son off life support shortly after birth. I've said that it's been both the hardest and easiest decision I ever had to make ( or will make).

Please take care of yourself. You're always welcome to post here, these women have been able to offer me some great advice and comfort. And if you would prefer, you can always PM me too.

Big hugs.

[dylansmommy2816]

snowbigdeal, I'm sorry I missed thanking you for your words. They were so unbelievably sweet. I'm also so sorry for your horrible loss. Peace be with you as well.

[dylansmommy2816]

iheartbroccoli, thank you for your kind words. I am SO sorry you had to release a sweet living son you bore. I'm sure your pain is unimaginable. Please accept all my prayers.

[flutterfly88]

dylansmommy2816, I am so sorry for having to say this but welcome. Thank-you for sharing your story with us. I am so sorry for your loss. I do not envy the hard choices you had to make.

I lost my son after he was born at 23 weeks, he had just not developed enough for the doctors to save him. Like rslh10, I used cabbage leaves to help dry up my milk.

Don't ever apologize for your story. It is real and you made the best choice for your sweet boy and yourself. You are not a coward for not wanting to see him, you are brave for making what I believe is probably one of the most difficult decisions ever.
The grief will come in waves. It may not feel like it now, but one day it won't be quite so intense and then it will hit again. Allow yourself to feel all the emotions that come your way. ((((Hugs))))


stillstandingmag.com/2013/06/why-you-didnt-fail-as-a-mother/ this was shared with me after I lost my boy and it is a tough read, but so very true. I hope it can help you too.

[dylansmommy2816]

Thank you flutterfly88... I just read that article and it brought me to tears. I'm so sorry for your loss as well.

[littleowl913]

dylansmommy2816 , I'm so sorry for the loss of your sweet Dylan. It's heartbreaking to welcome you to this board but I know I absolutely needed this place when I loss my son Ronin and I hope you find the same help here.

For the milk - Cabbage leaves, super tight bra and ice packs. I cried when my milk came in and cried when it dried up.

Be kind to yourself and post whenever you need to. I definitely considered this place as part of my therapy. All the ((hugs)).

[angelsnight]

dylansmommy2816, I'm so sorry for the loss of your precious son. I hate to welcome you here, but I am glad you found us. Please don't feel the need to apologize for anything, it's safe here to talk about what you need to, and we all understand even if each of our stories are a bit different.

I went into pre-term labor and delivered my sleeping girl at 22 weeks 2 days. Next month would have been her third birthday. I have since been blessed with another daughter, who will turn two just 5 days before her sister's angelversary. My daughter is my world, but there is not one single day in which I don't think of my Kayla. I miss her and love her so much.

The pain is still so raw and fresh for you. It will never go away, but I hope you can find comfort in knowing that we have all been there, and we're all still standing. I cried for a long long time, I think I cried every single day for at least six months after we lost Kayla. I still feel a lot of anger over it, and I will never get over the fact that her life was over before she even got to start living it. Some days, the pain is still just as fresh and real as the day we lost her. But in time, it does become easier to breathe. Most of the time I can talk about her now with a smile, and picture her in heaven, safe in my familys' arms. Remember that it is ok to not be ok. Take things slow, and come post here whenever you feel the need. Big hugs mama.