Mono/di twins: Kaelyn and Dani’s Story

Mono/di Twins

When I found out I was pregnant with twins, I had no idea what to expect. I didn’t know there were so many different types of twin pregnancies, and that each kind carried its own risks. Carrying Mono/di twins automatically makes you a “high risk” pregnancy, and there are many things you should be aware of.

So, what does Mono/di twins mean? It means that your twins are in their own sacs, but are sharing one placenta. This shared placenta puts them at risk for TTTS (Twin to Twin Transfusion Syndrome) and SIUGR (Selective Intrauterine Growth Restriction.) While both of these are rare conditions, it is so very important that you are aware of the symptoms and indicators in your pregnancy. In this instance, it is better to be overly cautious because these conditions of the placenta can be very serious, and even fatal.

My twins were Mono/di twins, and they suffered from both of these conditions. In fact, that is what led to their premature birth at 25 weeks, 5 days. That is the exact same gestation as the twins featured in today’s Micro Preemie Monday.

While these sweet girls did not suffer from TTTS, one did suffer from SIUGR, which is just as serious.

This story is filled with both heartbreak and hope. I’m so honored to introduce you to Kaelyn and Dani, as told by their mom, Ashley.

Kaelyn and Dani

1.Please tell us about your babies.

My mono di twin girls were born at 25+5 on march 17th, 2017. Baby A, Kaelyn, and baby B, Dani. Kaelyn was born weighing 1 lb 2 oz, and Dani was born at 1 lb 9 oz.

2. Do you know what caused your premature birth?

I found out at week 18 of pregnancy that my Baby A, Kaelyn, was growth restricted. The dopplers at the time were showing AEDF(absent end diastolic flow.) At week 23, my MFM, Maternal Fetal Medicine doctor, suggested that I go inpatient to have the heartbeats monitored 3 times daily.

On march 17th, Baby A’s heart rate had slowed down to around 80 bpm. When repositioning didn’t work to bring her heart rate back up, they decided to do an emergency c-section.

By week 25, dopplers were showing absent and reversed flow, and at 9:17 am my beautiful girls came into the world.

3. How long was your NICU stay? What was the hardest part?

Our NICU stay continues, and we have just past 2 months.

Dani is now weighing 4 lbs exactly, and unfortunately, my little troublemaker Kaelyn passed away after 49 days, weighing 2 lbs 7 oz.

The hardest part of being a NICU parent is the constant guilt you feel when you need to leave your baby there and not be able to bring her home with you. Not being able to pick up your baby whenever you feel like it, watching her get poked for labs, and having her feel pain no living person no matter how big or small should ever have to feel. Having to watch her grow knowing if it weren’t for all the equipment, she wouldn’t be here.

I couldn’t pinpoint any hardest part about the NICU. To me, it feels like the entire experience is the hardest part.

4. How are you and your babies doing now?

After just over 2 months, Dani is thriving. She’s gained lots of weight, she’s on full feeds, just got weaned off cpap and moved to high flow nasal cannula. She’s learning the “suck, swallow, breathe,” so we’ve been working on nuzzling and she’s doing pretty great.

Kaelyn (iugr baby) passed away at 49 days. The cause was all the trouble with her lungs. It started off as chronic lung disease, then she got pneumonia. Her lungs were very sick, and towards the end, her left lung was over inflating and taking away from her right lung.

The doctors tried to place her breathing tube down into her right lung, and position her on her left side to try to collapse her lung. It did eventually collapse, but her right lung started to have the over inflating problem so they put it back to its original place. After a few days, her body started to shut down. She hadn’t peed all day, her heart rate was dropping, and her body would no longer stay oxygenated.

Her father and I made the most difficult decision we’ve ever had to make and turned her machines off to stop her pain. The doctors all agreed, either way she wasn’t going to make it, and letting it happen in my arms surrounded by so many people who loved her was the best thing for her.

5. What advice would you give to new preemie parents?

If I had to give anyone any advice about a nicu stay, it would be to be patient, never give up hope, and love your babies with absolutely every single ounce of love you can. They will feel it, and they will thrive on it.

You’ll hear any parent say that premature babies are fighters, but they really are. I’ve never met another stronger human being then my little ones.

It does end, and though we’re not there yet, we’re looking at just over one more month.

Don’t ever blame yourself, because there is absolutely nothing you could have done to change it, or make it better. Try not to stay down on what has already happened and let yourself enjoy the milestones your tiny ones will meet.

Remember that not everyone gets to meet their babies as early as you. Just think of it as you get even MORE baby time than most people!

Thank you so much to Ashley for sharing her sweet girls with her. Please leave any supportive comments below. If you or anyone you know are pregnant with twins, please make sure you know what type of twins you are having, and get the appropriate monitoring. Mono/di twins are such a blessing, but also high-risk, and you need to be informed.