Mila’s Story

Site created on April 22, 2023

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place who care for our babygirl, Mila (Me-la) and our family. 

Mila Lee Benton was born at 24 weeks gestation on 3/5/23 at 8:58pm, Length: 12.75in, Weight: 1lb 7.6oz. 
Due date: 6/23/23
Mara Audrey Benton was born sleeping on 3/5/23 at 8:59pm, Length: 10in, Weight: 354grams. 

Early on in our pregnancy, we found out we were pregnant with monochorionic/monoamniotic (mono/mono) twins --one of the rarest form of identical twins as they share the same sac and placenta. We were referred to the Maternal Fetal Medicine team at Mayo Clinic Rochester and had been following with the "Twins guru" since our first trimester due to being high risk. During our first appointment, we had the "doom and gloom" talk to discuss the plan of care of many appointments, ultrasounds, and risks involved with mono mono twins. We remained hopeful throughout the pregnancy, but felt the daily anxiety knowing that anything could happen at any point and none of it was in our control. Since mono mono twins mean that  the babies share one sac, the biggest complication with these types of twins is cord entanglement which is what took the life of our Mara at 22 weeks in utero. We went for our routine 22 week appointment (2/17/23) in Rochester and were devastated as they could not find a heartbeat of Twin B. We coped with the loss of our Mara while still continuing to hope for the health of Mila and moving forward with additional appointments including two fetal echocardiograms and ultrasounds. Two weeks later at 24 weeks, we had another routine appointment with ultrasound and fetal echo which showed that Mila was doing well and we would follow up in another two weeks. Two days later, during a blizzard, our baby girls came early at Mayo Clinic Health System-Mankato, MN when we were previously planning to deliver in Rochester with Neonatology present. The Neonatology team in Rochester were on video during the emergency C-Section and sent their transport team via ambulance to pick up Mila. Due to the blizzard, it took the ambulance 3 hours to get to Mankato (which should've taken 1.5hours) and of course the ride back to Rochester to admit her to the NICU at St. Marys Hospital. We spent that evening and next day with Mara at our bedside as we had her baptized and transferred to a local mortuary for cremation to always be near us in our home. I transferred to Rochester via ambulance the day after delivery to continue hospitalization due to the C-Section and be closer to Mila. We checked into the Ronald McDonald House in Rochester on 3/8/23 and have been there off and on ever since. This place is truly amazing and am incredibly grateful to have this resource. 

Mila’s biggest struggle is the continued need for ventilation support due to her sick and underdeveloped lungs. She has been on the ventilator since birth and continues to need lots of help.  Lungs are the last thing to develop in babies, so it's very common for 24 week old babies to need ventilation or some sort of oxygen support. Mila also had a brain bleed at birth that they will continue to watch as she gets older. Currently the blood and fluid has been reabsorbed and she is stable from this perspective. She may have some sort of physical or mental disability but we will not know the severity for quite some time. We are lucky that Mila has been able to tolerate her feeds to allow her to grow to get stronger and grow more lung tissue. The doctors are hopeful and pleased with her progress! 

We appreciate all the support from family and friends as well as those whom we have not met that have reached out with similar experiences. We are incredibly grateful for the medical team and nurses at Mayo Clinic Mankato who were there for us during the most difficult time of our lives as well as Mayo Clinic NICU who continue to take excellent care of our baby, Mila. 

Newest Update

Journal entry by Mary Ann Benton

5 months actual— 9lb 15oz
47 weeks—7 weeks corrected

It’s weird having a five month old (8/5/23)  but when someone asks, we answer that she is 7 weeks old. The whole “corrected” age gets confusing, but I’m starting to get used to it. I’ve downloaded an app to help me assess her milestones based on corrected age, just to help me understand it a little bit more. Basically, the amount of weeks past her due date (40 weeks) is her “corrected or adjusted” age. 

Having Mila home has been the greatest blessing and we are truly living the “best case” scenario. She is on a very small amount of oxygen and we will always hope that as she gets older, her chronic lung disease only amounts to a mild case of asthma. We had her 2 week follow up appointments with pulmonology and ophthalmology last Monday (8/7/23) and received good news. During her eye exam, the doctor stated she is at Stage 1, Zone 3 which shows very mild abnormal blood vessel growth and that the blood vessels are almost done growing. Her eyes have gotten better and the doctor says she will not need any sort of treatment! This provider had also seen Mila in the hospital numerous times so he knows her quite well. Since the blood vessels aren’t done growing, he wants to see her in another 2 weeks and the hopefully that’ll be her last eye exam!!! We met with the pulmonologist as well and she wants Mila to continue on the same amount of oxygen until she can see a good trend in her weight gain. Weight gain= lung growth. So we’ll follow up with her again in 6 weeks and hopefully be able to wean down Mila’s oxygen at that time. 

Life at home has been really wonderful. I was able to go on a “real” maternity leave for 2 months and Eric took 2 weeks of PTO to spend time at home with us. It has actually been quite busy due to Mila’s appointments, me seeing a chiropractor, nurse visits, grocery shopping, and still taking care of the two older girls (Elsie 22mo, Eric’s daughter, Cameran 7yo) at night. Elsie still goes to daycare since we’re already paying for it and don’t want to lose her spot. Also really want to have that bonding time with Mila that we missed out on. 

We signed up for two different local programs so they can continue to follow us and provide support. One program is through our county which is a public health nurse who is able to come to the house for weekly visits to check Mila’s weight and to just be a support to us if any questions arise. The other program is called “Help Me Grow” which is through the school system so they can follow her as long as she needs it. The team consists of an occupational and physical therapist that will assess developmental milestones and determine her needs. As Mila will be behind in her development, this will be a big support for her and us as she grows into a toddler, but even as she goes to school, if she needs it. 

Cameran and Elsie are adjusting well, but Elsie definitely wants to be held more, especially when the other parent is holding Mila. But they are both GREAT big sisters and love holding her and helping with her bottle. 

Thank you for those who continue to reach out and thoughts and prayers that Mila continues to grow well. She has certainly surprised all of us and are SO grateful for her strength and everything she has accomplished!!! 💕





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