*Birth story* Looking for reassurance

hayyleeleehayyleelee member
edited January 2016 in Preemies
Back in October my doctor questioned why my belly was so small. I was scheduled in for an ultrasound where i found out my baby had IUGR and I was immediately rushed to the hospital for another ultrasound and heart rate monitoring. We noticed that the babys heart rate would sometimes drop for 30 seconds to a minute. The doctor decided I needed to get steroid injections to help her lungs develop and I have her heart rate monitored twice a week until the the due date and the goal was to keep her cooking until 37 weeks. In November I went to my weekly monitoring appointment where her heart rate dropped for what seemed like 5 minutes, they had me moving around in all positions, i was on my hands and knees, one leg and arm in the air until it went back up. I was rushed to the hospital again. I was in the triage all day from 11:30-12:00 until 8 at night. I was sent to the labor room, I had another steroid injection so at this point the goal was to keep her in there another 24 hours. Right after the doctor said this and left the room her heart rate dropped again, suddenly 3 nurses came in and I was sent to the OR for an emergency c-section. When I'm nervous I tend to make stupid jokes so the doctors and nurses were laughing and helping me relax. November 16th my daughter was born, she weighed 2 pounds 6 ounces and was a 33 week and one day preemie.She's almost 2 months old and she's still in the NICU. In the beginning her heart rate would still drop when she was eating, but its happening less and less now and she's slowly becoming more stable. The only thing keeping her there now is her anemia. She's had a blood transfusion which helped improve it, so then they decided to give her epogen shots for 3-4 weeks. When she had her blood work done on Friday, the doctors said there was no improvement and her hematocrit was at 19. I was so heartbroken. This was said during rounds so I was doing everything I could to not cry in front of 10 different people. She had another blood transfusion yesterday so I'm hoping they'll find out what's causing her anemia and shell be able to come home in the next few weeks. I'm so frustrated. I'm not getting these 2 months back, even though I've gone every day I feel like I've missed out on so much. I just need someone who has been through something similar to tell me their story and tell me that everything is gonna be okay.

Re: *Birth story* Looking for reassurance

  • mvhydemvhyde member
    edited January 2016
    I am sorry you have to go through this. My LO is anemic has had one blood transfusion and epogen for the last week. Fortunately we think we can tie the low hematocrit to her allergy issues. She develops bloody stools most likely due to milk or some other allergy. This damages her intestines and causes her to bleed causing a) blood loss and b) poor absorption of nutrients. She is on an amino only formula and it seems to have reduced her bloody stool. But she still has it occasionally, so her gut is not completely healed, but her blood work looks better.

    My LO was born 33 weeks 5 days and is still in the NICU (almost 6 weeks now). I hope you have a lot of support, I don't know what I would do without family in town. Sorry I can't give you any more encouragement. Just know that anemia is a common condition for preemies.

    If you have any doubt about the treatment get the neonatologist to sit with you and answer your questions. It's not wrong to ask about risks and benefits of treatments, even if you plan to follow the doctors recommendations. I always ask questions even though I know I want to follow the doctors recommendations. I want to know the risks of the treatments and want to know what kind of pain, discomfort or dangers will face my child.

    *Edited word choice*
  • I'm so sorry you're going through all this! My son was born at 2 lbs and 13 ozs at 34 weeks exactly. He had some issues with anemia but nothing as serious your baby. The NP in our NICU said it just happens and babies grow out of it! So hopefully your little one gets better quickly. I know how you feel about missing out. Now that he's getting older (5 mos) I really feel like I missed out on that newborn experience!
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  • Hi there! Stay strong mama ! At my 20 week anatomy scan my lo was measurinh small and continued to drop in the charts ultimately being diagnosed with iugr I was monitered weekly until 31weeks when I develped pre-e i had the steroids shots and delivered him 31weeks 3days 2lb 10oz. Althought he did very well in the nicu he still spent 9 weeks there to grow. Its a very tryingtime its exhausting and feels like it will never end. It will soon be a distant memory just and you will have your little one home. Having a preemie is a whole different experience extra dr appointment and extra paranoia but it gets better with time. We discovered my lo had anemia when he was 12mo 10adjusted and had to have an iron infusion and will be monitored for the next year although not as bad as your lo his is more iron related very common in a preemie. Just know you are not alone! Take advantage of your time in the nicu ask lots of questions use there knowledge and just be by your babies side (as I'm sure you are). I do wish you lots of luck that they figure out nore with your lo's anemia. In my experience a nicu team are a group of very special people and will do everything to make sure your baby goes home healthy. She is exactly where she needs to be right now:) I do hope you get to bring her home soon though I understand how hard it is. My ds is 16 months now and doing great its distant memory it feels like but I will never forget it. Goodluck pm me if ya need!
  • adryt86adryt86 member
    edited January 2016
    Were they giving iron orally with the Epo shots? The new red blood cells formed need the iron to mature properly. Also, Epo takes some time with preemies, longer than adults. It could be another few weeks before it helps. Also, I forget which b vitamin that studies have shown helps with anemia of prematurity, but I would ask about that. The positive thing is that her hematocrit is staying the same, not going lower. I would make sure they are minimizing every single lab draw and not taking blood just to take it. Microsampling is what they should be doing. I never knew (and I'm a nurse! ) until our daughter was in the nicu in October that baby's kidneys and bone marrow don't start working towards making new red blood cells until about 2 to 3 months after birth. Knowing that fact, it is ridiculous the number of unnecessary blood draws some doctors want from those babies and then turn around and want to transfuse them which can cause such a huge risk.
    Also, how often is she getting epo? Chloe got shots monday, Wednesday, Friday for 7 weeks.
    Edited for spelling
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