25w or 5 months: Tub of Love

As I approach my 38th birthday in a few hours, I realized that I want update my blog, but then again I'm torn. I started a shutterfly site too and I hate updating more than one thing - is there any consolidation for all these websites? Obviously, I'm terrible at updating anything, consolidation or not. Whatevs. So here I am approaching 38 and feeling sad and lonely. I honestly don't like MY birthdays. It's not the age that bothers me. I feel the loneliest when my birthday comes around. Most of the time I'm planning everyone else's birthday. Then when it's my birthday, I'm home alone. Go figure. At this moment, I wish I had siblings to celebrate with. I have cousins and friends, but everyone does their own thing. It's not like me to beg for some attention. People tend to think I'm strong, but the reality I'm probably the weakest of the group. I tend to hide the real feelings of emptiness behind the fake smile. After what happened this year, I told myself I will enjoy every birthday because it is the celebration of life. But I have talked myself out of being happy for a birthday - my birthday. I am bummed because I am supposed to celebrate my birthday surrounded by the people I love - my 3 kids and my husband. I had an emergency c-section for the twins at 34w1d on June 7, 2012. The boy was not doing well in utero. The girl survived, but the boy died a couple hours after birth. Baby girl had to stay in the NICU for 1 month before coming home. Long story short, baby boy has Noonan Syndrome which caused the cystic hygroma and heart defect and eventually hydrops fetalis which took his life. Our lives were turned upside down. My husband was rushed home from Afghanistan, but returned to the war grounds a week after baby girl got to come home. Before she came home, we had daily hospital visits, planned a funeral for her twin brother, and tried to keep big sister on her regular preschool routine. I didn't know if we were coming or going. I'm still in a fog. We ended up having the funeral on Father's Day. It's such a mix of emotions. I love my 3 kids. I am sad that baby boy is no longer with us. I am happy baby girl is growing. She's actually a chunky monkey at 5 minths old. She doesn't sit up or roll over like her friends, but she's trying. Big sister is now a kindergartener - she is truly testing me daily. I can't wait til daddy comes home for her and my sanity. Daddy is finally coming home soon. We hope Santa will bring us an early Christmas present. Instead of 3 kids and husband to celebrate with me, I have 2 live children and blessed with the spirit of one while my husband fights for our country. I just can't help but think, I sacrificed to carry twins and yet I now can only hold one. I feel blessed most of the time, but I am in one of those dark moments. I know God is there and time will heal, but this is painful. Not only am I overwhelmed with these emotions, I cannot even see the floor in my room. My mind is as chaotic as my actual surroundings. Happy birthday to me. Hopefully, it will be a better day tomorrow.

23w2d: Contractions

I have been having wierd sensations in my belly since last Saturday. It wasn't until yesterday did I realize that I was having daily contractions - Braxton Hicks/false labor. It seems if I walk or stand for even a short amount of time I get the tightening in my belly. All this time, I thought it was the babies in wierd positions. Bedrest might not be far away.

23w1d: Congenital Heart Defect

I had the fetal ultrasound for the twins yesterday. The girl is still in perfect health. The boy is another story. He has something called Tetralogy of Fallot. Simply put, he has 3 chambers instead of 4. By 45 days of conception, his heart should have full developed. Instead, his genes decided that his aortas will be ok, but the ventricles will not separated into separate chambers. Optimistically with modern medicine, the outlook is pretty good. He can live a long lifespan and I can have a normal pregnancy. Unfortunately, since the heart had formed, the ventricular muscle will not grow anymore. He will have obstacles along the way where he will have heart surgery to separate the ventricular chambers at 4-6 months. Up until recently, they were performing this surgery at the teenage stage. We won't know more until he is born, but I will have more fetal echos in the meantime. They need to see him once he has entered this world to do an official echo on him. Due to the plumpness of arteries, the doctor seems optimistic.

It's definitely a lot to take in and I was exhausted yesterday to look up more information on tetralogy of fallot. I'm sure I'll read a see saw of stories. I'll try not to let those stories discourage me. I just want to feel prepared. This disease will be apart of our lives, so I will embrace it. Speaking of discouragement, I have told several people about his disease. I really don't understand some comments that come out of people's mouths. In my mind, survivability, love, and health are the most important things when having a child. Instead, I have family members worried about abnormalities and deformities. Is that really what matters? Why do people bring you down? Aren't I under enough stress? Can't you just be happy or worried about the diagnosis and prognosis? His disease isn't my big stressor, it's the unsupportive comments that stress me out.

I continue to feel blessed to incubate the 2 littles ones. They are our miracle gifts from above. We will do everything in our power to give them all the love and happiness they deserve.

21w3d: An Inspirational Story

I am in love with this family.
http://www.dailymail.co.uk/femail/article-469650/The-twins-million.html

21w1d: Reflection

I keep reflecting about what happened in the last 24 hours. So much information has been given to me that I'm trying to process it all. I believe that the hospital is now preparing themselves rather than preparing us. They need the right specialists on hand in case he needs heart or kidney surgery when he comes out. They didn't even push the amnio because they can't do anything to change if he has Down's Syndrome. I think the amnio is more for the parents rather than the medical staff.

I am trying my hardest to take everything as it is. I am ok one minute and I am sad another minute. We are given things we can handle and we are blessed with whatever we get. I was so sure that we were having twin girls and we got one of each. After reading success stories, I was so sure that the boy was ok with just that one marker of the fluid in the neck. But since more markers have appeared, I am not so sure he is ok now. Too bad nothing can change the situation ~ if there is something that I can eat or if I have to exercise 3 hours a day I would. I just hope and pray he comes out happy and healthy with or without Down’s Syndrome. We will love him just the same if not more.

21w0d: Markers

I went in for a fetal assessment today. It turns out the boy has 3 down syndrome markers - kidneys are dialated, short femur bones, and cystic hygroma. This means the twin boy will have a 50% chance of having down syndrome. The biggest concern is the cystic hygroma because it can block the passage to the heart and cause heart problems. That is probably one of my fears that the his heart will have too work too hard. So far his heartbeat is awesome ranging from 154-163 bpm.

So the next set of appointments will involve an echo cardiogram to make sure there are no holes in the heart and a nephrology consult to make sure we know what to do with the kidneys. We will also go back to get the cystic hygroma and femur follow up. We need the cystic hygroma to go away and the femurs to grow.

The office is so much nicer and the staff is much nicer at the fetal assessment department.

Stats:
Boy: 13oz, heartbeat 154 bpm, measures at 21w6d
Girl: 1lb, heartbeat 124 bpm, measures at 22w0d

20w6d: Speculation

I got a call from my OB yesterday. The boy has an added marker/symptom for down's syndrome to make them concerned. Besides the extra fluid or fold or whatever on his neck, he now has a short femur compared to his head and stomach. I am concerned, but not. I mean he could just be short. Shortness is fine and down's syndrome is fine. As long as everything is ok with his heart, then I won't be concerned.

I am on this see saw of concern and trying to find peace in this whole medical experience. I am a strong believer in you are given what you can handle. He and she are our miracles from the man upstairs - if they are ready to come into this world we are ready for you little angels. Thank you for wanting to share your lives with us. Truly blessed.