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.
Adriana’s Survival Story
My twins girls came at 26 weeks and 5 days. When my smallest daughter’s water broke, I ended up developing chorioamnionitis, and they had to take them. Adriana was born 2lbs. 1oz. and was the healthier baby the first week of life and suddenly on day 8 she became the sicker of the two. We were told that she might have a bowel infection and she went from a CPAP machine to the ventilator. We had no idea how bad it was until we received a phone call that she needed surgery. The surgeon wasn’t sure how much bowel was dead and all we could do was pray that it wasn’t all dead. Four hours later we found out that she only lost less than a fifth of her bowel including her ileocecal valve, but the rest of her small intestine looked sick. Part of her bowel was also perforated. She had a stoma. Her surgery caused her PDA to open and two days later she had to have PDA surgery. The day after that they had to go back in and clean up her stomach. This time her small intestine looked pink and we felt relieved. She had so much swelling that they had to put her on the oscillator. She held my finger after all three of her surgeries the took place in four days. She looked at me as I told her how much I loved her and how important it was for her to fight. They couldn’t close her wound the second time due to all the swelling and they had to keep pumping her full of platelets, plasma and paxils. Every day my husband and I watched as she slowly got better and her swelling slowly went down. Since her wound didn’t close on her own, they had to help close the wound with a wound vac. She had several stomas and a mucus fistula. They had the worst time keeping the stoma bag on, and it was getting changed anywhere from 3-6 times a day. It was extremely difficult to watch her cry through every stoma bag but I always made sure to put my hand on her head and hold her hand while the nurse would change each stoma bag. That always seemed to calm her down. They started feeding her on continuous feeds, but she only made it to 5ml per hour before she started dumping. After seven weeks she was reconnected and did very well with surgery. We were so hopeful that we were finally in the right direction. She almost made it to full feeds before she got sick and they had to stop feeds again. Her belly swelled up and they had to put a suction tube down her nose to suck out the air and contents in her belly. They kept a close eye on her to make sure she didn’t get NEC back again. After a week off they thought she might have a stricture or an obstruction and she got an upper GI. It came back showing that everything went right through which was good news. They started her again but this time ever three hours with a bottle. She did great with the bottle, but it was too much for her and she started throwing up. When they started fortifying my breast milk she started having blood in her stool and would cry as if she were in pain. Everyone suspected she might have a lactose intolerance. This time around she made it five days before she got really sick again. They had to back off on her feeds and switched her to pregestimil. That week she lost 7oz. At this point she was finally a full term baby, weighing under 5 lbs. and her sister was 2 lbs. bigger. They had to yet again go off of feeds for a week and give her belly a break. This time she had a barium enema which showed a slight narrowing in one of the places she was reconnected. They started her back on continuous feeds but this time with pregestimil. After several days of pregestimil she was dumping so they decided to add pectin to help slow down the dumping because she started losing weight again. The pectin seems to be helping. They also decided to give her breast milk for 24 hours to see how her body would react. It was not good. Her stool became like a faucet and we now know that she can’t handle milk at all. They are now giving her only pregestimil and have slowly been getting her to full feeds. She has been in the NICU for 113 days and is 43 weeks gestation. Right now she only weighs 5 lbs. 1oz. Her growth chart is horrible. Every time she takes 3 steps forward, she takes 4 steps back. Adriana is such a fighter and it’s amazing to me her resilience. I hope that we can soon get her gaining weight without being on TPN and lipids. She has been on and off TPN for so long that it’s starting to elevate her liver levels and she is jaundice due to it. Her pic line has been in her little hand since her first day of life. I’m looking forward to the day that she will no longer have a pic line and will be able to take from a bottle again. I can’t wait for her and her sister to get healthy enough to come home but I know that they are in a good place. I do my best to visit the NICU frequently with a positive attitude and I participate in everything that I can with their care. I’ve learned that the more that I’m there holding and interacting with my children, the better and stronger they become. I know that Adriana will most likely always have some difficulty with her digestive track. I’m prepared to do whatever it takes to help her to grow and tolerate feeds.
About NEC
What is NEC?
Necrotizing Enterocolitis (NEC) is a gastrointestial disease which typically affects...
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