Read about Mighty Owen, as his Meredith Elder tells their story.
To start, can you tell us about your family and first learning you were
pregnant.
Thank you so much for giving us the opportunity to be able to share our story! You honestly do not know what it is like to go through this experience until you have gone through it yourself. We hope to be able to relate to other families and help them as they go on this journey.
My husband and I had been married about a year when I first learned I was pregnant. We always knew we wanted to have children and thought we would take it slow in trying. I had been taking birth control for about 10 years, so I figured that I would get off of it let my body get use to not taking it and I would be pregnant a few months later in August (it was February). However, in April my body had other plans I was having some symptoms of being pregnant but did not actually think I was at all. Finally, it was the week of one of my best friends wedding and I thought I would just take a test after her wedding to be sure, but my husband said we will not wait and I took one that day and sure enough I was pregnant! I cried from the shock of being pregnant so fast, but we were so grateful! Then at our first ultrasound the nurse had the screen turn towards her and kept very quiet for a long period of time. I assumed something must be wrong, then out of nowhere no warning or anything she said, “Well, there are two babies in there.” My husband and I were so shocked and overwhelmed. He even said to her, “Mam, I think you need to work on your delivery when you give that news, maybe start with a warm up, like well I have good news!”
I kept quiet during the ultrasound to process how our lives were going to change times two and when she left the room I cried. I hugged many strangers and took the rest of the day off work to process what was going to happen next.
For those reading that may have never had an experience with the NICU, can
you explain what it was like learning your child would be or was in the
Neonatal Intensive Care Unit? When did you first learn you would be spending
(a lot of ) time there?
Since we were pregnant with identical twins we were told from the beginning that there
was a high chance we would end up in the NICU at least for a brief amount of time. We never thought we would be there for 140 days and I think it never occurred to us the severity of premature birth and all of the complications that could go wrong with having a baby. We always thought even though they were born at 25 weeks that we would be spending a few weeks maybe a month of two in the NICU and then we would go home with perfectly normal, happy, healthy babies.
After the babies were born and we learned how small they were (1 pound 2.4 ounces and 1 pound 3.4 ounces) and that they were requiring 100% oxygen, I think it was the first time we got very scared about our situation and that we realized we had been very naïve about what our future might hold.
Tell us about your birth experience.
My pregnancy was not an easy one. I felt great the whole pregnancy I never got sick or ever felt ill so I never thought that there was anything wrong with the boys and I never knew that something so big could be happening inside of me, but I was oblivious to the whole thing. At around 20 weeks during a routine check at the fetal medicine doctor I learned that I had twin-to-twin transfusion where twin B (Luke) was donating all of his nutrients to twin A (Owen), causing Luke to be very small with little amniotic fluid around him and Owen to have enlarged organs with excessive fluid. We had to leave for Johns Hopkins hospital that night for an appointment and possible surgery in the morning. I had a laser surgery the next day where they told me I had two goals, not to go into labor that night and to have two heartbeats the next morning. I was able to accomplish both and after 48 hours we were dismissed to go back home to North Carolina.
A week later I started heavily bleeding and went to the hospital there they told me it was more than likely from a hematoma from the surgery and not to worry. Another week past that they noticed the fluid around Owen was significantly lower meaning my bag had busted. I was sent to the hospital for the rest of the pregnancy. We were hoping that I would remain in the hospital for a very long period of time, however I got an infection when the boys were 25 weeks and had to deliver early.
We were so very scared to bring them into the world so early, but since their heart rates
were going up so much we knew they were in distress. I had a c-section and was nervous the entire time. Owen came out very easily but Luke was harder to get to and they had to shake me and maneuver him around to get him to come out. I was able to see the boys after I left recovery and I was shocked at how small they both were. I was sad I was not able to keep them inside longer and that I was not able to touch or hold them, but I was just able to look at them in their little incubators trying to stay alive. I think at first I was still very groggy and it did not hit me the severity of what had just happened or how much our lives would be impacted from everything we still had ahead of us.
Tell us some about your NICU experiences.
The hardest time in the NICU was when our baby, Luke passed away. We had been in the NICU about a month and already been through an infection with Owen, hearing that Luke had a bowel blockage and a grade 4 brain bleed, hearing Owen had a grade 3 brain bleed possible PVL, and PDA. Having had our boys on the oscillator, under the blue lights, almost an emergency surgery on Luke and just countless ups and downs with bradys and desats. So we thought we were NICU pros at this point, we thought man we have had the worst of it, it really should only get better from here.
A day shy of the boys one month birthday we got a call from the doctors before Bradley had left for work that day and they told us Luke’s heart had an arrhythmia to it and we should come in. We were not very panicked at the time and thought "oh man just another hurdle to overcome" but we did not know the seriousness of the situation. That day we cried more tears than we ever thought imaginable and learned how amazing and precious each day with these tiny miracles really are.
Looking back, what helped you through the first few months in the NICU?
I honestly think I survived the first few months by saying to myself “everyday is one day
closer to being home.” I knew that eventually even if it felt like 100 years it would be over, and I would be home and we would all be a family under one roof. It also helped that all of the NICU nurses and doctors are the greatest group of people on this earth and they really welcomed us. We got to really know some of them and know about their personal lives and what they did outside of the NICU. They were not just our nurses; they became our friends we got to celebrate their milestones in their lives just as they celebrated milestones with our family.
We have also leaned on our faith through this whole process. We prayed all of time nonstop it seems and some of the prayers were anger towards our situation, but I do not think we would have been able to survive a day in the NICU without our faith.
What was the hardest part about the day to day in the NICU? How did you and
your husband manage time at home, work and the NICU?
The hardest part about the day to day is not knowing what to expect or how fast things can change. You could have 15 really wonderful awesome days with nothing but good news and then the 16th day everything could be turned upside down and all of the progress that happened could be stopped and you are back 5 steps. Also, on the other side things could be going so slow and it seems like no progress has been made and then one day it seems like your baby just gets it and turns it around!
It was also hard just having our schedules not be ours anymore. I remember saying so many times how I can’t wait to have a day when I did not have to leave the house. I was very lucky that I did not have to work during the NICU stay so my husband would get up and leave for work and I would get up clean around the house or run an errand and spend the day in the NICU, I would go home and make dinner we would eat and then we would both go back up to see the boys.
It was very hard for my husband as he really did not get any down time expect to sleep. He would leave the house around 6-630 AM for work and we would finally get home and settle around 1030 PM, but he would also not want to go a day without seeing our babies.
Do you have any suggestions or coping suggestions for other Moms in your
position?
I would suggest to get primary nurses as they are so amazing and will love your baby just like you do. One of my nurses had shown me her phone and she had so many pictures of our little guy on there just like he was her own (we had asked her to send us pictures of him when we were not there). I would also say to reach out to other families who are in the NICU with you. A lot of them are there for long periods of time just like you are and are going through similar situations; no one can relate to you like they can. I still stay in touch with some of the NICU families one family who we loved has sent us clothes from when their baby had grown out of them since our little guy has been so much smaller. When another family lost their baby after being in the NICU for a while three of the families went to the memorial service. It truly becomes a family in the NICU.
Do you have any advice for other NICU Families just beginning their journey or
those that are newly home?
While you are in the NICU, trust me when I say it will come to an end. When we first got
there we were just hoping for a day or a week without one piece of bad news. We wondered if everyday would be this bad and while there are many hard days in the NICU there are so many firsts and wonderful things that happen. Make sure to lean on the other families in there and the staff. They are going through this journey with you and care about you and your baby they will understand in a way that no one else can and they become as invested as you do. Don’t worry about every beep or sound in the NICU, if you have questions or are concerned definitely ask, but the nurses are so well trained they are paying attention and know if something that requires immediate care is happening.
Appreciate all of the time and the milestones that you have with your baby. After losing
Luke we looked at everything differently. Yes, we were in an awful situation, and going back into the NICU after it happened to see Owen was so incredibly hard, especially seeing other twins, but we were so grateful we had a baby to go back and see and we know he will always have an angel watching over him.
Try and be patient with other people around you. I found a lot of people, family, and
friends trying to relate to our situation and even give advice. At first it really bothered me because they do not know what I am feeling or going through and I am sure a “sort of kind of” situation you had might have made you feel sad, but you don’t know what I am feeling so if you could just mind your business. However, after awhile I knew they were just trying to be there for my family. Most of them were just as scared as we were and just wanted us to know that they are there to talk to.
In the end this is your journey, there is no right or wrong way to go through this as
everyone is different and they process things differently, do what you feel is right. If you
want to stay at the NICU all day if that makes you feel better then you should do that. If you know that this is your last chance to get your house ready and you love the nurse that has your baby that day, then run some errands and do something for you, because once the baby comes home you will not get another chance.
How did you learn about Bee Mighty and what made you apply? What do you
hope to do at Bee Mighty to help others in your footsteps?
I heard about Bee Mighty through the NICU! I was fortune to share the same primary nurse as Candace who started Been Mighty and our nurse told me how wonderful it was! It has help us so much as Owen still requires therapies which are extremely costly every week. Insurance only covers so much so having the help from Bee Mighty is such a gift.
Any final words of encouragement for other families?
Just know that it does eventually get better and there is a light at the end of the tunnel. The NICU is a place that no family ever imagines they will be in and it is very hard, but just know the people there are on your team and want what is best for your baby.
It is okay to be angry and sad that, either your pregnancy did not happen the way you
wanted it to or that your baby has some extra things to overcome but it makes you truly
appreciate every accomplishment with your baby even more. I don’t know how many times I had to turn off my computer or even turn the tv channel when someone was complaining how tired they were from having to get up with their baby. Those people did not know how lucky they were to have their baby at home. I also am so lucky that I have a baby I was able to being home from the hospital and I was able to know a sweet baby boy that will forever be a guardian angel.
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