Paige’s Survival Story, her twin sister is Lacey

October 15th, 2011 by Lisa

My story starts on may 11th 2011, I had gone in for a csection as I was pregnant with identical twin girls. Twin 1 Lacey was 4lb 1 and twin 2 Paige was 3lb 3. I had to have them at 32+5 as there was an absent edf with Paige al tho she was fine once delivered and Lacey didn’t breathe for 20 mins. They were both whisked off to Nicu and I only got to see them briefly for a couple of mins that night. As the week went on Lacey was the one who we thought we may lose,she had seizures, she had jaundice, was on a ventilator and was pricked everywhere trying to find out what the infection she had was. Whilst this was going on Paige was getting stronger and stronger, she moved from itu to hdu then finally 7 days later she was at the nursery end but still in an incubator. We got to feed her her first bottle that day and we were so happy we would soon have her home. We felt like celebrating, which now I wish we never. We went for food, came back and she literally looked like death. She was grey, all mottled and her belly was so bloated and extended. The doctor told us to go home and rest, which we went to but as soon as we got in at midnight we were called and told to get back to the hospital. We got there and we were told she has nec and the doctor explained everything to us and I kind of zoned out. At that moment I couldn’t talk, I really thought we were going to lose her and I broke down, she was so tiny and I couldn’t see how a baby so tiny could survive such a surgery that she may have needed. she was transferred to another hospital on the Wednesday that delt with gastro problems and by Sunday she hadn’t got better or deteriorated so she had to have surgery. They found a perforation at the end if her large intestine and beginning of her small intestine, luckily the stuff the leaked out contained itself in a little pocket, if it had leaked into her body it would have poisoned and killed her. They only had to remove a small amount of her intestine and she had a stoma. Once she was off her tpn and was on full feeds we took her home for 3 weeks ( Lacey had got better and wad home too! ) we actually felt like they were finally ‘ours’. We took her back for her closure surgery, which felt like it took forever! The consultant told us she would be off feeds for atleast 7 days but for some reason after 2 days they fed her. They kept aspirating alot of green fluid and she couldn’t get up to full feeds. After 2 weeks she was rushed for surgery again. They found gas bubbles in her small intestine and part of it died again, it was pink instead of red and the part that was joined up had got swollen. She now has another stoma, she is still in hospital and is on the list to have her closure on the 19th October 2011. She is still really tiny weighing 8lb 9 at 5 months where as her sister is a lot bigger. She’s still on tpn and cannot establish full feed. I’m hoping that she will have this closure and be ok again and not end up wit nec for a third time. I’m not sure why but I feel as tho there is no light at the end of the tunnel and she will never get any better.

7 responses to “Paige’s Survival Story, her twin sister is Lacey”

  1. Shannon says:

    I understand the long road you are facing..my son’s story is Benjamin’s story. We had a long difficult journey. My son has had 5 surgeries and never managed full feeds until his stoma was repaired. It is an incredibly hard road but your little one has survived so much already. I pray tomorrow will be the beginning of the end for you. Hang in there..

  2. Lisa says:

    Thank you for your comment. At what age did your son have his final surgery? Paiges surgery was moved forward to Monday but Sunday night she spiked a temperature so she wasn’t allowed surgery as she has some sort of infection. The gastro team have said after she’s had 3-4 days of antibiotics they will do more tests and hopefully do her surgery next week.
    I was hoping to have her finally on the right road but there’s so many set backs. I really do not know how to feel right now, we just really want her home for Christmas but it’s not looking very likely

  3. Shannon says:

    My son’s final surgery was a massive abdominal hernia repair in May. He did have some bowel manipulation and an ileus after the surgery. He had his small bowel reattached Sept. 17. 2010. Fortunately he had no digestive issues after. He went on straight breastmilk without an issue. I’m sorry surgery was put off again, but you don’t want her having surgery until she is 100%. My son got sick just before his first reattachment and we thought he was ok..but the whole thing tore apart inside his belly.. I wish we would have waited. Christmas would be amazing, you just never know. After all our issues Benjamin came home on full feeds Oct 20th, 2010. We went from surgery and only tolerating 5mls continuous/hour to full feeds via bottle in a little over a month. You just don’t know. You have to take it one day at a time….I’ll say a prayer for you baby girl. Keep me posted.

  4. Lisa says:

    Thank you. She ended up not having surgery again as her blood cultures grew something so fingers crossed for the Monday coming

  5. Elaine says:

    Crossing our fingers for Paige and wishing up to those stars for these dreams of health for her!!!!

  6. Lisa says:

    Thank you. They are hoping to do it Monday as long as there are no emergencies but I’m not holding my breath, the hospital she is at is so disorganized

  7. Elaine says:

    Wishing up at those stars!

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