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There are plenty of twin birth stories, but mono-mono twin birth stories are quite the extreme.
Today I have reader Stephanie here to share with us her unique experience that I hope can help many of you in the same boat.
Her mono-mono twin girls are now almost one and thriving. This is a story with a beautiful ending.
Here we go!
In December of 2018, my husband and I found out we were expecting.
We had the typical appointment and ultrasound showing our beautiful little baby. We decided that my husband would change careers and do something that paid better but with less stressful hours. Due to this shift in careers we had a lapse in insurance and were unable to get a second ultrasound done until I was 24 weeks pregnant.
At 24 weeks I went to the hospital with pain in my side. After checking me out and telling me I was good to go, the dr came back in with a sonogram machine and said “I just want to make sure there’s just one in there”.
What?!? I laughed at him but in that moment I knew he was going to find more than one. How often does a Dr come rolling in a sonogram saying that.
Sure enough, “there’s one……..and there’s two”. All I could was laugh. No use in panicking. I don’t think this is like a restaurant where I can say ‘sorry you must be mistaking, I only ordered one’. I keep watching this doctor; he keeps searching for something. He assures me that there’s only two and they’re both ok. He says ‘I don’t see a membrane but that’s ok’. I had absolutely no idea what that meant but I was about to find out.
The next day I had an appointment with a high risk Dr or MFM at the clinic. She too tells me that she doesn’t see a membrane but sends me over to the perinatal imaging center where ‘they will surely find it. If they don’t find it than your twins are mono mono and that’s incredibly rare’.
I head over to the perinatal center and have another ultrasound. This time an MFM comes in and says “there is no membrane separating them. They share a placenta and a sac. They are incredibly high risk and rare mono mono twins. They happen in less than 1% of all twins and most don’t make it to viability. So do you want to go upstairs now or do you want to go home and get your stuff?”
So yesterday I was having one perfectly healthy baby and today I’m having rare twins that may not even get here and even if they do, they’ll be born very premature?!?!?
I’ll spare you all of the details of the long and drawn out portion of this story but that weekend I went inpatient at 25 weeks. I was on monitoring all the time. We were just waiting: waiting until they started deceling and we were rushed into the OR. That’s basically the routine with monos. Monitor them until it becomes a life or death situation or until they no longer have a heartbeat.
At 30 weeks and 3 days our girls started deceling frequently and they weren’t always rebounding like they should. At 6:30am they moved me to L&D. At 7:30am the dr came in and told us they were safer out than they were in and we had the OR at 8:30am.
At 8:45 am our little Juliana was born.
At 8:46 am our little Carlie was born.
I got to see them as they were being whisked away to the NICU and finally got to visit them about 2 hours later after recovery.
I spent the next 4 days at the hospital and then it was discharge day. I had to leave the hospital without my twins?!? Cruelty. Absolute parental cruelty. Or so I thought.
The worst was yet to come.
Our girls were doing great: in the NICU as feeders and growers essentially. Until day 11 came. Our sweet little Juliana had been in some obvious pain for a day or two now and it was obvious something was terribly wrong.
My child was screaming in pain but unable to get medicine. My child was yellow but nobody could tell us why. My child had a heart rate over 200bpm and it wasn’t going down. My sweet baby cried and cried until she cried herself to sleep. She would sleep for 5-20 minutes and wake up again in excruciating pain. All I could do was cry right along with her.
At 7pm on Fathers Day, they told us they had called in a surgeon. The surgeon took a look at her and said she needs surgery NOW. They loaded our baby up and told us we could follow-we ran down the hall chasing the isolette. At the surgery doors we said goodbye to our sweet girl and went to hit our knees in the waiting room and pray that she was going to be ok.
Surgery was over. She was alive but she was not ok. She had stage 3 necrotizing enterocolitis or NEC. She had 2/3’s of her small intestine taken out, she had three different infections and was becoming septic. She had only a 30% chance of making it.
She struggled for a few days and was in grave condition for a while but she had a will to live and she had some amazing guardian angels fighting alongside her.
Six weeks later she was healthy enough to have a reconnection surgery and have her ostomy reversed! She had a gbutton placed and she come out of surgery without even needing to stay on her vent.
She is a fighter and she was determined to go home with us! And she did! On September 5th, we walked out of that hospital, entire family together, for the first time since April!
At 11 months old, Juliana is just like our little Carlie. She has already had her gbutton removed, and according to her doctors “she’s just like any other 11 month old just with some battle scars and one heck of a miraculous story”
I’m writing this to you on Mothers Day. My first Mother’s Day with my twins! My twins that were a rare 1% of all twins, with only a 50% shot at survival, and my miracle Juliana, that defied all of those odds and won a battle with stage 3 NEC that was expected to take her from us.
I could not be more blessed or proud to be their momma. I would tell their story to every person I met if I could. I struggled with odds that were against us, NICU life, postpartum depression, and being a medical momma but for double the kisses, double the hugs, and double the love, I’d do it all again in a heartbeat.