Finn’s Story

June 24th, 2011 by Alicia Love

Finn Love 11/01/10
He was born 9 weeks early because BV. HE was 3.8 lbs. Scored 9 Apgar. HE breathed with a cpap for 3 days only. He developed a bloated belly & green bile on 11/4. He was still active. He had not feed yet. They thought it was a mal rotation he was transfered to another hospital. They tested and retested never diagonsed the issue but the belly went down and they feed him. First the nurse feed him formula even though I had tons of breast milk in the fridge. We noticed she was doing it and she just said she didn’t know we had breast milk. Isn’t she suppose ti check??!! He stared doing better & gaining weight and the transferred him back to original hospital. He did well for 3 days before getting really sick. We noticed he looked really bad the day before with dark circles under his eyes but they told us it was nothing.
When he got sick again they told it was a blockage in the intestine or NEC but it would clear up with antibioctics. The transferred him again but it toke 8 hours for them to pick him up. 8 hours!! With no treatment. Both doctors had told each hour counts with NEC. He got no treatment for 8 hours. We called 4 times wondering where they where. No one should wait 8 hours for a transfer let only a baby!
We started to get treatment at the new hospital but nothing worked. It took 5 days for him to die. He got surgery but nothing worked.
We are not pleased with the nurse or the transfer. Or the first non-diagonses. Don’t know if he never drink formula or if he had be treated in those lost 8 hours that he would be here but it really upsets my husband and I. Wish we knew more so maybe he wouldn’t have been feed so soon after have a issue in his belly. They say it leads to NEC if the baby had another issue in his belly. Also maybe it was NEC even though he hadn’t been feed yet. He had many other sign.
Thank you for letting my share and other
Alicia Love

13 responses to “Finn’s Story”

  1. Miranda says:

    Alicia, I feel your pain and anger. I have so many what if scenarios that play in my head. My daughter was 35 weeks and 3 days when she developed NEC. She had a previous tummy issue at 3 days old and it was corrected. I also caught her nurse giving her formula about 4 days before she developed NEC and I was so mad. I had plenty of milk in the NICU freezer and plenty at home. My daughter was also delayed into being transferred to the higher level NICU for surgery. She was diagnosed about 4AM and the transfer was about 8AM and it was still too late. She had no symptoms of NEC until after 2AM and was started on antibiotics by 4AM. She went into surgery about 11. There was nothing they could do. This disease makes me want to scream. I hate it. I also hate that more nurses and parents are not educated enough on it.

  2. Alicia says:

    It is almost the same story. He was around the same age too! I agree people should know more. I know more now. I have read everything there is to know on this. I think the his early tummy issue was a slight case of NEC. They can’t even tell if it was or wasn’t. The doctors don’t know enough about this. They don’t do enough research. I was at one the best hospitals in the country and still they didn’t know enough or take enough care. It so hard to make sense of it all. I wish this didn’t have to happen to anyone. It happen NOV. 2010 and it is still very painful. I don’t like pregnant women or babies right now. It been a wild ride.
    How are you handling it?
    Thanks for saying something to Finns story it means a lot

  3. Miranda says:

    I have good days and I have bad days with dealing with this. I go to therapy once a week and it really helps a lot. I am a firm believer in therapy and 2 weeks after her death I made my first appointment. My therapist has taught me so much about allowing myself to be in the moment. If I am hurting, I allow myself to grieve and cry. I had 2 friends pregnant at the same time as me and it is beyond difficult to talk to them. I can’t even think about it because I am so jealous of their good fortune to have a successful pregnancy and a full term and healthy baby. And I know that my reaction is just one of the ways I am working through it all. If I am angry, I allow that as well. My therapist has advised me to keep a couple dozen eggs in the fridge all times so when I’m angry enough I can go outside and throw them at a tree. Madelynn died on May 12th and I am still very much deep in my grief. But I’m trying everything possible to deal with it as healthy as I can. I find sp much comfort in knowing their are other moms like me that has been through this and we can have this outlet to discuss the pain.

  4. Elaine says:

    Alicia and Miranda,
    Today the communication between you both are helping me too. I created this site for reasons just like this…for parents like us. Lost and in pain. When Caitlyn passed away I had 2 friends pregnant and I have watched their children grow up. It is hard because I see them and know Caitlyn would have been playing with them….should’ve been playing with them. On the 1st Anniversary of her funeral the best man at our wedding had their first son, none of this is easy. Baby showers…pregnant women…and when those around you announce their pregnancy. Both my Sister and Best Friend told me they were pregnant 7 months after Caitlyn passed and it hurt…but some how you get through. Somewhere the strength comes….time does not heal (even though many say that), but time does teach us how to deal with it…it becomes a part of us. Caitlyn would have been 5 years old now and at school. I miss her everyday and wish it was just different and that she was here. I keep her photos beside me at night so that I see her last thing at night and first in the morning. Alicia and Miranda, whenever you want to talk I am here. This site is my life and is my therapy. Today I have Zoe who is 2 years old and Phoenix who is now 5 months old. Pregnancy has been really tough, and a really heart heavy process…but Zoe’s name means life and she has given me that, Phoenix’s name is a bird that never dies…I didn’t ever want to tell anyone I was pregnant until I was 9 months…it is a road too tough to share with so many, and so many that don’t understand….we have this site…because parents that come here…do understand….take care…Elaine

  5. Miranda says:

    Elaine, I have wanted to ask how moms go on to have other babies after experiencing such a devastating event. I have been thinking about trying for another baby but I am so scared. I have also thought that I wouldn’t want to tell anyone about a new pregnancy because I just don’t want to deal with anyone’s reaction or concern. Before I had Madelynn I was such a planner. I mean really … Everything was always planned out. After her birth it took me 6 weeks to even look at my planner. And now I still can’t think past a week. Which I think is remarkable because after her death I didn’t know hoe to make it from one hour to the next. Time does heal and every tiny step adds up. Elaine, thank you for developing this site.

    Alicia, Finn’s story says that he was born early from BV. I don’t think I know what that stands for. I went by Madelynn’s grave site earlier to visit. We have her picture on her headstone. I miss her terribly. I was told to keep things of hers close by. So under my pillow are 2 of her little preemie outfits she wore in the NICU. I have also started her baby book which is a scrap book format. We had over 300 pictures of her from her 5 weeks and 6 days she was in our lives.

    Every time I think of the medical staff telling me over and over that week that I needed to be getting prepared and trying to get extra rest because Madelynn was days from being released to come home. She was 4 lbs and 3 oz and gaining. She was coming home. I was so excited and so ready but I still stayed to make sure I got in at least 3 breastfeeding sessions with her every day. And then out of no where just an unbelievable heart crushing disaster…..

  6. Alicia says:

    Bv is bacterial vagionos. A bacteria infection of the vagina. Very normal. I have since found out from a high risk doctor that they don’t really know if that is why he came early. Lots of pregnant women get it and don’t have premature birth.
    I went to therapy right away also. Still in it. It helps. 2 members of my family had babies near mine and now I think for the rest of my life I will look at there kids and think Finn would be that age. What would he like, whats would have been his favorite color, favorite food etc. At the time it was winter & there was lots of snow. So I snowshoed, sometimes in the stroms, I would yell his name as loud as I could. I felt like I was looking for him. We also had gotten a puppy before the birth. I thank god for that. She made me smile every day. I had to getup and care for her. I am still glad we have her for that
    Peoples reaction where the worst. My family didn’t know what to do at all.
    Right after a pregnant friend invited my to help them move because she couldn’t lift boxes!! I was upset
    Some people did amazing things for us I barley knew. This kind of death brings out the best and worst in people.
    We are afraid of having other children too. I have a job where the whole town I live in knows me. Finns death was very public, I wish I could hide for 9 months. But I can’t.
    I just don’t know how to be happy. how will this be better. I know I won’t get over it but you to really adjust? I keep reading the new normal, It scares me. Is the new normal crying a few times week for the rest of my life? Each day that all I try to face I guess

  7. Miranda says:

    Alicia, I live in a small town as well. I’m not one to normally care what others think but with me predisposed to preeclampsia, I have to be able to keep myself calm which I also want to lose some weight and just do everything I can think to do to be at less risk for preeclampsia. The first month after Madelynn’s death I blamed it all on myself. If she just wouldn’t have been premature then she wouldn’t have had NEC. If my body had not tuned on me then Madelynn would not of had to fight as hard as she did to survive. I know I keep saying devastation but that is how I feel. This huge cloud of devastation is just looming over me and sometimes it is just so hard to even breath. Alicia, I am so shocked at how my family dealt with this. It is so sad when you realize how few people you can really depend on. I think that is also something that I’m dealing with. I’m grieving for losing my sweet baby, but also grieving that I have to face who are the wrong people in my life. Have also have 2 sweet dachshunds that are 4 and 6 years old. Their love is so unconditional and it is nice to know that I can still love them and take care of them. I also have a wonderful husband that has been so extremely supportive and just my rock. I worry sometimes that he is not grieving enough but we are just grieving differently.

  8. Miranda says:

    And yes, the new normal… The dreaded new normal. Mine is still developing but the old normal is totally out of existence. My priorities in life are so very different and my goals in life are changing because of this. The new normal… I hope that I’m not crying as often as I do now. I cry a lot. And I also hope this lump in my throat and kick in the stomach feeling will not be as bad as now. That is a interesting thought … What does anyone’s new normal look like?

  9. Alicia says:

    I blamed my body also. I still do sometimes. I just to reach out to see how other people feel. So I know we are not alone

  10. Elaine says:

    Alicia and Miranda,
    Dreaded new normal…true, just that we wish it was all different. When Caitlyn died it was hard to open the blinds in the morning, I never wanted to get out of bed. I blamed my body too, I had Preclampsia coupled with HELLP Syndrome and if I didn’t have that Caitlyn would have be born in June not April….nor so weak at 1lb 13oz at birth. I went to therapy once, but felt it regressed me…and found creating this site and maintaining it has really been my therapy and my outlet for my pain. Nothing can change what has happened, and this helps me keep Caitlyn alive in me. Talking about her…I can’t do that with anyone else…even now. Its too hard…it hurts too much. You do learn a lot about people through this and I did change. My perceptive is not to stress over many things at all, I found work less stressful…I find when friends or family can’t do something you wish for…it doesn’t really matter the same. I feel better about life that way, because that stress would break me down. My Husband did deal with this differently and still does…he helps with the site but never reads the stories…it is too hard for him. He went back to work about 3 weeks after Caitlyn passed away. We had our first miscarriage about 8 months after and he went into Post Traumatic Stress and became very depressed. It stresses marriage because the pain is so raw and if one is having an okay hour…the other can change that quickly…so sometimes that is why therapy is better. We got a puppy and moved houses, I think that all helped. Also went on a vacation 3 months after Caitlyn passed and then again 3 months after that.
    Alicia and Miranda, not many know how we feel, nor would we want them too, at least we have each other..and this site. It has been a rough road and six pregnancies, but Zoe and Phoenix today are my life and when I look into their eyes…I know they know…they know…..

  11. Miranda says:

    We have been in the progree of moving for about a week. Last night was our first night in our new house. I put Madelynn’s picture on the refrigerator on Saturday. The first photo up in the house. I had it in the other house on the frige also… as I go by I give her picture a kiss. It is a funny picture of her smiling… she almost looks like she wants to laugh in the picture. She was just a happy baby. I have never known just a tiny, young baby to smile so much.

    We went on vacation a month after Madelynn’s death. That is where I started writing letters to her to try to get some of the guilt out of me. I still write letters to her. Writing is a very good therapeutic tool for me.

    And I agree… work is very much less stressful for me. The bigger picture is not about work.

    I also felt like I had Post Traumatic Stress after my c-section. Madelynn was about 2 weeks old and I first thought maybe I was having Postpartum but the images in my mind were of my baby being ripped from my body. The whole event of her birth was scary and stressful. My blood pressure medications just suddenly stopped working and my BP went up so fast. I had a terrible headache and my doctor really thought I was about to have seizures. So I was rushed to surgery and Madelynn was born. She was 29 weeks and 4 days, weighing 2 lbs 10 oz. She would have been a big girl at full term.

  12. Ruthy says:

    My Baby Lydia just passed away a week ago. reading all your stories is comforting. i will write her story soon. thank you very much all you strong parent.

  13. Alicia says:

    I hope in the following months you can find some peace. These story make me feel not alone. NEC is a awful thing. I am sure you are a strong parent too.
    Have a Peaceful New Year

Leave a Reply

Your email address will not be published. Required fields are marked *