Peyton Rose as a newbornMy friend Tricia is an amazing mom. She is a mom who had twins and had to face things some people never have to face in their lifetime. And through it all, she continues to be selfless and strong. I admire her so much. She is as much of a fighter as her daughter Peyton, who along with older (by one minute) brother Andrew, are reminders of how precious life is, and how love and faith can get us through even the toughest of times.
Tricia and her husband Stephen were trying to start a family. She had a miscarriage in 2007, and of course that adds an element of fear when trying again. Late in 2010, Tricia learned she was pregnant again ... with twins. But her cervix was thinning and opening at 18 weeks. This is her story of hope, loss, and love.
In Tricia's own words:
The morning of March 14, 2011 I had a weird brown spot. I was about 18 weeks. I went to the doctor’s and found out that my cervix was starting to thin and open. We also found out that one of the twins was a boy! I had to see a high risk pregnancy specialist and they admitted me that day. I was having very small contractions. They wanted to perform a cerclage, a stitch in your cervix to hold it closed and prevent premature delivery. They told us of the risks. They could break my water during the procedure and lose my babies or I would be on bed rest hoping and praying I would make it without the stitch. We went with the cerclage. They performed it the next day. They have to bring you in a delivery room and give you an epidural. The surgery went okay. My cervix couldn’t hold the stitch as much as the doctor would have liked. I was told I needed to stay in the hospital for the rest of the week. But that changed. I had to go to the high risk unit and was admitted until I was 28 weeks.
We learned we were having a boy and a girl. What we wanted! Things are going to be okay, I thought. My husband slept at the hospital with me just about every night. But then I was put on strict bed rest, only allowed to use the bedside commode and Steve gave me sponge baths. I was willing to do whatever it took. If I keep this up things will be okay, I thought. Won’t they?
The NICU doctors told us our options. If I give birth at 23 weeks they don’t do anything to save the babies unless we tell them to. At 24 weeks they do whatever they can. They gave us scary books to read and scarier statistics. They told us when the babies were viable and also started me on steroids.
During the time I was in the hospital on bed rest. I learned that close friends of ours had lost their son early. She had the same cervix issues as me. It hit close to home. I cried so hard when I found out. I thought to to myself that life is not fair. They caught mine in time and had my babies still inside of me. I was so upset that I couldn’t be there for them. I didn’t know what they were going to think of our babies because our children were suppose to grow up together. Like their fathers did. She was due a week after me. They are such great and kind people why them? Why anyone?
On April 26, 2011, I woke up at 2 a.m. to use the bedside commode and my water broke. I was 24 weeks and 6 days. Just one day shy of 25 weeks and that is a big one day for development per the statics. I called the nurses to tell them. At least 10 people came rushing in. I started to have contractions. They moved me to labor and delivery to monitor me and the babies closer. They gave me medicine to try to stop the contractions. Finally the doctor came in about 4:30 a.m. to tell me that every contraction I was having made my daughter’s heartbeat drop dramatically. They told us I need an emergency c-section.
At 5:31 a.m. I had my son, Andrew Donald 1 lb 4 oz and 11 ¾ inches long. At 5:32 a.m. I had my daughter, Peyton Rose 1 lb 1.1 oz and 11 inches long. They took my babies from me. That is how I felt and still feel to this day.
It wasn’t your normal c-section. They didn’t put the babies on my chest. They rushed them to the NICU so they can save them and give them all the support they need. I felt gypped. Hours later, I got to see my babies. They were so tiny and fragile. They were miracles. I was so happy to see them but I was not able to hold them. The next day we were told that our son had a massive brain bleed that saturated his brain with blood. We were told the outlook was grim and that brain surgery on a 1 lb preemie is very risky. After much thought, we made the hardest decision we ever had to make and decided not to do the surgery. The doctors told us we did the right thing, that we are great parents for it, and we are the most unselfish people.
On April 28, 2011 we had to take him off his support. If we left him on and didn’t do anything still not knowing if he was in pain we were just prolonging his death -- that's what we were told. Do the doctors know what they are doing? I thought. Have they seen this before? I question myself. I question them. I didn’t want to do it. I wanted to be selfish keep him here but did I? We had him blessed before they took him off support. We stood with our family around his isolate holding hands, crying, praying, talking about if we are making the right decision. It's hard to share that. Maybe someone would have done something different and judge me for it, like I judge myself. I feel at times I am the one that killed my son. I have lots of guilt and second guess myself every day. I also feel guilty because it was my body that couldn’t hold them in. I am crying as I am typing this. Reliving it all again.
After Andrew was off his support, we were about to hold him for the first and last time. We all held him tight knowing we will never be able to do it again. He lived for a couple hours off his support. At 12:50 p.m. on April 28, 2011, God took Andrew to be with him. It was the worst day of our lives. He had a strong name -- because he was named after our fathers. My father in-law, Andrew, and my dad, Donald. He had a strong heart. My father never got to meet him. I question myself everyday. Did I do the right thing? Did I do everything? Should I have believed the doctors? Should I have done more? Should I have left him on the support and try the surgery? Should we just have left him on support just to have him? I have my demons in my mind about it every day. You really never understand unless you are in that situation.
While this is all going on my daughter was fighting for her life. I have another child to worry about. I was hoping they wouldn’t give us news on her like that. We went to her isolate right after and just held her tiny little hand. We prayed to God that he would not to take her, too. I questioned if there was a God. If so, then why he took my son and not me. Why us? Why anyone?
On May 2, 2011, we had services for Andrew Donald at the cemetery next to my parents' house. Family and friends came -- I'm not sure they know how much it meant to us. Words can’t describe it. That day had a great moment. I did get to hold my daughter for the first time before we went to the services. It was incredible.
Weeks went by with Peyton in the NICU. They told us one day when we went in that she has a small brain bleed. I want into panic mode before they could tell me anything. I was thinking and preparing for the worst. I was thinking OH MY GOD not again! They said they were monitoring it. They watched her head size. Then they had to transfer her to Yale’s NICU because Bridgeport didn’t have children’s Neurosurgery. We were scared. My daughter has hydrocephalus caused by her brain bleed. Hydrocephalus is when the ventricles in her brain accumulate the spinal fluid that is supposed to go through out her body and make them enlarge. It has side effects (like everything does these days). The side effects can be a small learning disability, mental retardation, complete care for the rest of her life all the way to death. Twenty percent of babies who have this come out normal. There are ways to treat this. We had to wait until Peyton was at least 750 grams to get a reservoir put in. They had to do “blind taps” as they call it and go through her soft spot in her head, go through the brain and remove some of the fluid buildup until she could get the reservoir put in. The reservoir is placed in the silent part of her brain. "Silent" means they have no idea what it does, even today. The reservoir is used to remove the fluid more frequently and safer then the “blind taps.” She had that put in when she reached around 750 grams. They had her on high calorie powders in addition to my breast milk.
After the reservoir placement, they did the taps more frequently and they weren’t blind anymore. They went right through the reservoir. They continued to monitor her head size daily. She was on all sorts of wires and breathing tools for a long time. She had to reach at least 2,000 grams to get a shunt placed. They continued her on high calorie formula because my milk supply was too low. I felt like the worst mother -- I couldn’t make food for my child. But I soon realized that it is not the worst thing in the world.
As Peyton was getting bigger and reaching her goal we started to realize that she is a fighter and a miracle! She finally reached her weight of 2,000 grams. She finally got the shunt placed on July 27th (her second brain surgery). We sat in the waiting room for a couple of hours (it felt like a lifetime). The neurosurgeon himself came up to tell us it went well and she did wonderful! Without a doubt we knew she would. He handed us a card with hair taped to it and “Peyton Rose” written on it. We were like what is this? He said “it’s her first hair cut”. Those doctors are amazing and wonderful. They helped her! They saved our little Monkey toes, We had faith again.
A couple weeks after the shunt placement, they finally took Peyton off her breathing tubes and her feeding tubes. She learned to do all of that on her own. Preemies have to learn that. It is not just something they know due to being born so early. Peyton was able to come home on August 12, 2011 (her Poppy’s birthday). It was all so exciting and nerve-racking thinking we don’t have all the stuff she was hooked up to at home to tell us if her pulse drops or her breath slows. Very scary when you kind of were depending on them. The next day, my baby girl choked on her spit up. My husband jumped right into baby saving mode and performed CPR on her, which they gave a class for in the hospital. I recommend all parents take it. I went into panic mode looking at my daughter who was BLUE! I have seen that before in the hospital when she stopped breathing once but we were at the hospital and the nurses and doctors were there to help her. I called 911. The ambulance, fire, and police came. They took her back to Yale to check her out. They admitted her for observation. We went home the next day with a clean bill of health and our baby girl was back home again.
We think of our son Andrew every day. We miss him and love him. I have my moments every day. I have a new “normal,” though I still feel guilty. Peyton has appointments all the time and people come to the house to work with her. We still don’t know the brain development and won’t for a while. So far everything is looking good. She is doing everything she is suppose to be doing for her “corrected age.” The corrected age is what should would be if she was born full term. It has been a rough road. Life after the loss and NICU is a struggle. People don’t seem to understand that sometimes. They think oh she’s home everything is okay. That is not how it works. Now we have to learn a routine, which is pretty much down now. We have to pay all the medical bills on top of our normal bills (yes we have insurance but still a yearly out of pocket).
I am hoping that by telling our story someone else can relate. I want others to know they are not alone, there are others who understand. I created a Facebook group called Angels and Preemies to connect with other parents, so we can support each other. I also want people to be aware of what other people go through. If I can make a difference in at least one person’s life, I will feel I am telling this for a good reason. I am not telling this for a pity party either (that is not my way of doing things). I want to help people become more aware. This has changed me in so many ways, good and bad, but mostly good. I didn’t come this far on my own. I had help. From my husband, my family, my friends, my doctor for putting me on medicine, my therapist. I have seen what this can do to people. It can make them go into a dark hole that they can’t or don’t want to get out of. It makes some people live and move on or makes them want to help people and make a difference. That is where I am now! I want to be that person you read about in the paper, a magazine, a website somewhere on what I difference I made or am making. Thank you for taking the time to read my story and learning about me and this difficult situation. Please remember not to judge people because you might not know what they are going through. So smile, live, laugh, and have faith. Things do happen for a reason even if we don’t know what they are for.
Peyton is now 9 months old and thriving.
Peyton Rose today
Thank you for sharing your story, Tricia. It has affected me more than I can explain. I love Peyton's smile, and I know Andrew is looking down smiling at all of you, too.
Did you have a preemie or experienced loss?