I can’t promise that this surgery will be your last, as a matter of fact I know it won’t be. You will need to have another one on your heart sometime when you are a young woman, that is if your heart doesn’t tell us that it needs to be intervened sooner. Until then we will be focused on staying on top of every doctor/specialist appointments. Yes my love, other girls that have turners syndrome have no signs or symptoms of it, but don’t forget that some girls won’t be able to take their first breath and you did, but it came with a price. Some girls fight to have a better body, you fight to keep yours. Some girls fight to not have their hearts broken, you fight to keep yours beating. You have had to fight harder than most to live so don’t ever take that for granted. After this surgery you will have another battle scar so wear it with pride because some girls care more about not having an imperfection but your “imperfections” perfect you.
Don’t loose that fire in your spirit that drives your mommy, daddy and brother crazy. We know that same fire is the reason we have you today. Don’t loose that funny laugh that forces you to tuck your chin in because we know you deserve to laugh after everything you have gone through. Don’t loose that sweet smile because you light up our days knowing you are with us and you didn’t have to be. God put us all together because He knew we needed each other, and we go through all these hardships because He knows we need Him, we always will. You are never alone my love.
My sweet love, you were born with turners syndrome, but that is not who you are. You are not a syndrome, you are not fragile, you are not a sad story. What you are my sweet love, is a Devereux. You are a warrior. You are unbreakable. You are solid and you are made with the unyielding love of our Father Lord Jesus.
As I get older I start to understand that my parents weren’t perfect, aren’t perfect nor will they ever be perfect. I have accepted that they weren’t perfect already, my childhood and attitude could have told you that. But I wasn’t prepared to realize that they still aren’t perfect and the mistakes they made when I was a child are still mistakes they continue because this is who they are. So that leaves me with the question, will they ever be perfect or will they ever try to make right all of their wrongs? Is it too late? Probably, but now that I have my own family I want to learn from their wrongdoings and give my children much more than I ever had.
All of these thoughts have come to me now that I am 32 trying to play catch up with school and trying to give my children an example of how important it is to have an education. I left school in the 10th grade because I had no direction or desire to complete it. I had no idea that I was able to make only A’s (and one damn B) in college, but this is because the D’s and F’s would follow me through high school because you have to be in class, and study to make anything more. My kids have to know that if they don’t go to college after high school, life will grab hold of them and make it that much harder to go back. I will remind them that going to school now as a wife, and a mother is no luxury. They will know I studied while they napped, and slept at night. I will let them know that I never studied while they were awake because I enjoyed every single waking second with them.
What do I do now? Nursing school was my dream but now I feel like my body is falling apart and I question if this is still the path for me? Now that I have finally found my calling I am having back issues, wrist issues and anxiety. Who knows what God will put in my life but I do know one thing. I will not stay stagnate and conform to a life that does not sit well with me. I will live up to my potential… Yes, I am a decade behind, but better late than never right?
The babies are 18 months old and I can’t help to feel like I have already let them down, despite my effort to never do so. This week Eva had to go by ambulance to the ER because of a high fever and because she was so inconsolable her lips were turning blue. While we were waiting for the ambulance I had both babies in my arms and I started to cry exactly like them. Eva was in pain, Eidan was scared and I am their mom and it is my job to help them and I couldn’t.
Through an X-ray a hiatal hernia was officially confirmed and now she needs another surgery to correct that as well as to fix the fundoplication that she already has. The same fundoplication that and has given us problems since day one. Even though its been rough we have finally found a system that works for us and were going to back to square one right after this next surgery. We don’t know if this time things will be better, or worse. I can’t help but feel right back in that dark room I was in months following the birth of the babies.
I am tired of seeing her through pain, I am tired of being away from my son, and I am tired of only seeing my husband when we switch out from the hospital. I don’t want my daughter to have yet another battle scar, I don’t want to miss out on my nightly rituals with my son, I don’t want to have to update my husband or get updates of our daughter, depending on who’s with her that day/night at the hospital when she has to go in again.
I don’t know how I am going to tell her how incredibly strong and how fucking unbelievable she is despite every one of her imperfections when she becomes a teenager and she starts to notice. I don’t know how I will tell her that God made her heart the way he made it in perfect timing and for perfect reasons. That she was born at a time that it could be repaired because he knew the love in her heart was too much a regular heart could handle. I will tell her that scar on her side from that procedure is beautiful. The g-tube and fundoplication scar was put there because she had to learn to eat by mouth later in life, because during the crucial period that babies learn to drink out of the bottle, she was too weak and needed to focus on healing and growing to get out of the hospital to be back with her brother. I will tell her as soon as the g-tube is taken out and after a scar forms that it is beautiful and I couldn’t wait until I saw that one created. The cystic hygroma was the first thing the doctors saw when they realized there was an issue when she was still in my belly, and it was a reminder of the long hard road for all of us. When it was removed that reminder that every doctor said she was not going to survive was gone with it. That scar is my favorite and I will tell her its beautiful.
I will always tell my son that he is just as special as his sister. I will tell him she is no more important than him because I know he will feel like that. I will tell him I recognized at a very early age that he is very perceptive and extraordinary. I will let him know I tried very hard to give him extra time after Eva goes to bed so he knows he’s important too. I know he will feel like she gets more attention sometimes because of her health but I will remind him that she is alive because of him and he is alive because of her and that is a bond that is more precious than any person can describe. I will remind him that he is always her protector and God planned this perfectly for His purpose. I will forever thank him for his patience, love and sensitivity that reminds me so much of his father, and is reason why I fell in love with his father in the first place.
Thank you God for every day and every battle. Don’t let me forget any of it.
I forgot to mention in my previous posts that everything we went through from July 2014 (two months before I gave birth) until May 2015 (when the twins were 8 months old) we lived at my husbands grandmothers home (his grandmother was awesome to us, she helped us out when we were at our lowest and we are truly indebted to her). We lived in a small room where I did everything in, and I mean everything in there. I made it my own home. If I left the room, I literally ran to the kitchen when the twins were taking a nap. The first time I actually decided to leave them for more than two minutes, I went for a walk around the neighborhood while Josh watched them, and that is when Eva decided to do her first roll over. I think at that moment I realized she was totally daddy’s girl, and still is.
By the time we left to our own home we were able to stretch our legs and Eidan finally got to perfect his crawling. Eventually Eva figured it out too and this is when things began to get REAL! They were tag teaming me every chance they had, and they still do. After a few months of living in our own home Eva’s most amazing nurse moved away. She was with us for a few months and I trusted her with all my heart. We tried another nurse but it didn’t work out and something told me I could do it on my own and I have never looked back since. I get to watch them grow before my very eyes and see them process and learn something new everyday. Eva does however still have physical therapy and occupational therapy that comes twice a week, and thank God for their help. I think the gap between Eidan and Eva’s physical achievements would be much bigger if we didn’t have therapists for her. You need to know the edema she has on her feet is substantial and she’s figuring out how to walk on rounded, instead of flat feet. It will get better as she grows but until then she has her own way and it is absolutely impressive to watch. She is unbelievable. Eidan also it truly something to watch as well. His strength is remarkable, like a little ant. Im pretty sure by next year he will be able to lift me up with no problem at all.
Honestly, I always worried about the babies loosing their twin bond because of how long they were separated but after Eva returning home after her second heart surgery, the look they gave each other eased my worries. Since then their twin bond has grown exponentially. For example they both move at the same time, multiple times throughout the night… and they sleep in separate rooms with their own sound machine. They also have developed their own language that is still growing everyday, leaving me out of the loop. I sometimes wonder if I had had them separately would they have been better off because I would have been able to give them more one on one attention. After months of really reflecting on it, I know their bond is more important. I think Eidan pushes Eva more than I ever could so I set time apart when one is asleep and the other is up to give them the special love and attention I think they need on an individual level. Thank God for His wonderful plan and intricate tests for us all. Not only am I thankful for our twins, I also know I could not have gone through this experience with my sanity intact with anyone other than my husband.
January 22, 2015 Eva was discharged from the NICU, but not without a fight. I didn’t think I was ready to take care of her at that time considering everything that had happened back to back with her health. I remembered watching her expressions as we left the only place she knew, the hospital, and it was incredible. She was always a very observant baby there so as soon as we were outside her curiosity was set on super mode. In the car she looked out the window as we drove and watched the trees and at every stop she would look at me as if I gave her comfort because I was a familiar face but soon after that comfort faded and I became a stranger.
The moment I had been waiting for was right there. My babies were finally reunited 142 days after their birth and it was such a let down… they ignored each other despite all of our efforts. Soon after getting her situated I started getting adjusted to the g-tube equipment, medications, preparing her milk for the next 24 hours (which was very complicated), still pumping and the biggest adjustment of all… meeting the needs of two babies at once. Soon after starting her feeds through her g-tube her crying started. She was inconsolable multiple times a day from then on. Because she had been connected to machines in the hospital always, trying to walk around with her to try to calm her would result in fear because she wasn’t familiar with that feeling of being held and walking. I was sad, overwhelmed and wanted to die. I was not suicidal but at this point I was running on empty with little to no sleep. I had to stop pumping soon after she got home but the every few hours of pumping were replaced with adding more milk to her g-tube bag every four hours. She was being fed 22 hours a day at this point and still connected to a machine but at least it wasn’t 4.
Then, February 8, 2015, happened. 17 days after being home I had the fright of my life. This night I got up 30 min before the next time I had to fill up her g-tube bag of milk and I was tempted to hit snooze but something told me to stay up and watch her, so I did. Probably a minute away from thinking I was crazy I noticed milk started coming out of her mouth… then her nose and she was white and unresponsive. I knew there was a problem. I stopped her food and started suctioning her milk from her mouth and nose and had my husband call 911. Ultimately she ended up aspirating and ended up in the PICU for a few days and she remained in the hospital right up until the night before her next heart surgery. Unfortunately as soon as we go to the hospital she was herself again. I hadn’t seen that happy girl ever since we got her home and I knew at this point she thought the hospital was home and I realized there would be a lot of work to do.
Her 2nd heart surgery was on February 17, 2015. This time they did an aortic coarctation repair with a patch aortoplasty. She was in the PICU for another few days but she did really well overall. Following this surgery her heart has been doing good as well, praise God. She has been able to come off 1 of 2 of of her medications that she was originally discharged with and we now are able to see her cardiologist every 6 months instead of every month. They are still monitoring that area along with other valves that are smaller than normal. We know as she gets older they will have to intervene with surgery again but until then we thank the Lord she was born at a time where medical knowledge is where it is.
October 16, 2015 was THE surgery we knew she would need inevitably from the time she was born. It was to remove a large cystic hygroma located on the back of her neck. This anomaly is sometimes part of turners syndrome but in this case it was larger than they had ever seen. Ironically this was the one surgery I had the most anxiety about because I knew it was going to take the longest but it ended up being the best. This is because she healed so nicely and her pain was very minimal. Tylenol did the job when they usually had to use narcotics in all of her previous surgeries. Since removing it you can tell her neck is very strong and she is fast, ninja fast. She is a lot happier and we are so blessed. After all of her obstacles she consistently proves doctors wrong and its such a beautiful feeling. She now loves being home with her brother and I am now the person she goes to when she is hurt or sad. In the beginning I questioned if we would ever have that bond because of our very rough start but we do. Our bond is unbreakable.
When we got pregnant with the babies I knew the day after that I was pregnant. I have not a clue how but I did, and I told my husband immediately. Then when it was time for me to take the test we were snowed in. So after two days of being stuck inside our house, and after the commissary was FINALLY opened, I scrapped the snow off of my car and rushed to buy the tests before I had to go to work. When I got back I took a test and it was negative… I took the second test and it was negative and then I took a third test and it was POSITIVE! I was excited/scared and in shock. This was January of 2014 and the first pregnancy after my corrective surgery on my uterus. I knew this could be the one… or in this case the two.
After finding out about the pregnancy I ended up putting my two weeks at MAC on February 20. I knew this pregnancy I had to take it easy this time. Despite how much I tried to be relaxed I had some scares so I became that paranoid patient that called the doctor for every unusual thing. And then March came along and we went for our ultrasound and as I looked at the monitor I saw two somethings, but I didn’t have the training to know exactly what I was looking at. Then the doctor said it….. “Looks like were making up for lost time.” I looked at my husband and his eyes looked full of fear and excitement. The doctor confirmed, TWINS! I gathered up my words and the only thing that could come out of my mouth was, a lot of eff words. I mean a lot of EFF words. I cried, I laughed so hard I sounded like a maniac.
The news came as a shock because neither one of us have twins in the family. You can imagine as we called our family members to inform them of the unusual news, we had very interesting reactions. We also celebrated with my first craving… Popeyes. It took us a while to accept that we were pregnant with twins, I even found out that women over 30 and that are taller than average have higher chances of having twins. Well in my case I fit that profile and God had big plans for us. We even took advantage that on April 1st (April Fools Day) was our last day of our first trimester so we shared only the above picture on Facebook and the reactions were priceless.
I had an abortion. That never gets easier to say and it never will. I had an abortion long before finding out that I had a uterus that would not allow me to carry any child over the first trimester. I found out this somber news in North Carolina after having a total of 3 miscarriages. I made a choice to terminate a pregnancy that would have ultimately terminated itself. That is a hard pill to swallow.
Was God angry at me? Was this punishment for my abortion? Those were the thoughts I had after every miscarriage. Every time we told people we were pregnant, we soon after had to tell them that we had a miscarriage. Holy crap, the look of pity from the army wives that heard from the grapevine was just terrible. It was almost embarrassing for me sometimes because I felt like I am a woman, I should be able to do this but I couldn’t do the one thing women are supposed to do.
I still don’t think I am completely over it. The last miscarriage I had was right before Josh deployed and I suffered in silence. I was so far away from my family and friends, but because of the distance I felt like they didn’t know me anymore, hell I didn’t know myself. The one person I wanted or could talk to was on a dangerous deployment and I was so scared that I prepared myself (as much as I could) for him not coming home. I was in a miserable place that a piece of me still lives in.
The surgery (uterine septum removal) that was September 2013 (one year exactly before the babies were born) allowed me to get pregnant after all of these heart breaking miscarriages. It basically removed a large septum in my uterus that did not allow the babies to grow and receive the nutrients they needed to survive. The doctor mentioned that it was one of the largest he had ever seen (of course it was). When I got out of anesthesia I told the doctor he was my best friend and when he told me my husband was there and that my husband was my best friend, I cried. I also woke up in the middle of the procedure and told the nurse that I would do her makeup. Anesthesia is such a strange medication.
It is still very hard to accept that blood on my hands but it is there no matter how many times I wash it. After having my babies I make it a point to inform women that it is a decision that will more than likely follow you for the rest of your life. It is something that can’t be taken back and that child cannot be replaced. I realized after having my babies that my babies were my babies from time of conception until the day I die.