Another Normal Appointment

     We had another doctor's appointment today (just the OBGYN, not the specialist stuff), and he seems to be growing well (based on the Doc measuring her belly). According to some info we read, many Trisomy's stop growing on their seventh month, so this news is hopeful.

It's Different

     I feel guilty sometimes because this issue isn't always on my mind. There are days that go by when I hardly think about Trisomy 18--I think about our baby, but not the concerns that my wife feels every hour of every day. For her, every kick from the baby is precious, since we don't know if he'll be active for very long once he's born, if at all. This right now, could be his life, the best part of his life. She's able to share that with him (although I know pregnancy isn't just a walk in the park either), while I get a few reminders, mainly when I happen to be feeling her belly and he happens to kick at that time. Is it different for men and women?      (Well, duh!) Of course. We have our different roles and strengths and feelings. This isn't something that is constantly on my mind, and when I do think about the baby, I force myself to think of all the good times we'll share. I love him already, I really do. I'm grateful that my Heavenly Father has given him to us. I hope to live worthy of the blessing.
     So, yes it's different. But different is good too.

Forward With Faith

     We've decided we're going to go forward with faith. We're going to do all we can to prepare for this baby in our home and have faith that all will work out in the Lord's way.
      So we finished two dressers and fixed another, so that we'll have an extra for the newbie. And we put together a changing table we got from a friend. Soon we'll go get diapers and the like so we show we are exercising our faith. It's all we can do, and it's right to do so.

A Man's View

     I'm a man. I'm a creature of few feelings, and those I do have are too hard to get to and usually not worth the effort. But sometimes, even a man feels something. In this case, I feel a lot of things. First of all I feel grateful for the knowledge of Eternal Families, and for a wife with faith enough to make up for my shortcomings. We're praying for all the miracles we can to have a healthy baby, yet we accept God's will. His ways aren't always our ways, but we believe we can gain an understanding of His ways through study, prayer and living with faith and optimism.
     I also feel grateful for supportive friends and family who care enough to ask how we are. If I were in their shoes, I would probably try to avoid the topic, uncomfortable with how to talk about it.  But they show their faith and charity by bringing up the hard topics and offering their optimism and encouragement. Thanks, we love you all. -- the dad

Hard Day, Better Now

    So, last Monday I had a really bad day. I was given a priesthood blessing the day before telling me that I would be able to "meet and know" my baby. Well, I immediately heard the work "meet", and my heart sank. I understand the word "meet" to mean a short encounter.  I figured the Lord was telling me that my baby was going to die soon after birth.  I started thinking about where I would bury my baby.  I am a planner, which leads me to be pessimistic sometimes.  I didn't know whether to start getting the baby stuff ready (clothes, crib, etc.) or to start looking into funerals. Well, my optimistic husband said to me "don't you understand, you should be relieved - you were just promised that your baby would be alive when you deliver him."  He said " weren't you just mentioning that you were worried that he hasn't been moving very much lately."  He also said "you don't know whether it's going to be a short encounter, or if he will live a long life, but at least you get to meet him."  True, but I still felt hopeless.  I had let Satan put fear and hopelessness into my heart.
    Luckily, I had some family members and friends looking out for me and following the prompting they were given by Heavenly Father.  I am so grateful that they followed those prompting to talk to me, and were guided in what to tell me.  They told me it is good to be prepared in all things, but keep your hope and faith alive.  My brother in law told me that I better get my baby things out and ready - I need to show faith and hope that things will be okay.  He also shared a few stories with me about his life.  I also realized that if my baby came tomorrow, I wouldn't be all ready or prepared, whether he was normal or if he has problems.  I would have to figured things out as I went.
    So, today I am optimistic.  I again have hope and peace, and I know that whatever happens is what the Lord wants to happen and he knows I and my husband can handle it.  I am going to prepare as best as I can, gain knowledge about all aspects of what can happen, but also keep the hope alive that everything will be okay.  At least at this point I know that I will get to meet my baby and know him, and that now is a huge comfort to me.  -- the mom

Second Ultrasound

     We went in for a second ultrasound last week. The Perinatologist explained Trisomy 18 to us.  He told us the typical "Trisomy 18 markers" he would be looking for and started checking over the various body parts and organs. Trisomy 18 markers include: a defective heart, clenched fists, rocker bottom feet, delayed growth, and kidney abnormalities.
     The good news we received is that his heart looks good and the brain cysts are gone.  He also didn't notice any external abnormalities.
     The bad news is there is still fluid in his kidneys. On a positive note, there is also fluid in the bladder, which means the kidney's are draining something.  We are scheduled to have another ultrasound in 7 weeks.  The doctor offered to us an amniocentesis, a procedure where they put a needle into the womb, draw out some of the amniotic fluid, and test the babies DNA for Trisomy 18.
     The bottom line is that without an amniocentesis we really don't know much. The ultrasound isn't precise enough to tell us much.  At this point, as far as we understand, there isn't anything that can be done if they find the extra chromosome-except that they could have specialized doctors on hand at the birth just in case. So we decided to hold off on the amniocentesis until our next ultrasound in March.  The risks of the amniocentesis on the baby decrease the farther along they are.

Not Sure Yet

     About two months ago we had our first ultrasound and saw that: 1. We were having a boy, and 2. He had all his limbs and things looked well except for some fluid in his kidneys and some Choroid plexus brain cysts (our third child also had the brain cysts, but he is fine and well, alot of babies and adults have them and they don't know why). The ultrasound Dr. told us we should have another ultrasound in 6 weeks to check up on the kidney and cysts.  But then the next day we got a call from my wife's OB telling us about her AFP blood test. It alarmed us because he doesn't usually call, most matters are handled by his nurse.  He found that the baby could possibly have Trisomy 18.  He sounded concerned and asked what the baby's original due date was, and said that since it was different than what he had written down he would recalculate the risk factor, check out the notes from the doctor who performed the ultrasound and then call back.
      He called an hour later (2nd alarm), and told us the risk was the same and that we could have another ultrasound the next day (3rd alarm).  My wife asked what Trisomy 18 was.  He downplayed it, to not freak her out, and told her the baby could possibly have external defects.  She asked if anything could be done about it.   He said no, and so we decided that we would wait until the next ultrasound in 6 weeks.  The OB suggested that it be done by a Perinatologist.
     Well, of course, we were a little stunned by the news.  What would we do if our baby had defects, how would other people treat him.  Well a few days later my wife decided to look up Trisomy 18 on her own, because she likes to be prepared.  Trisomy 18 basically means he might have an extra 18th Chromosome (3 #18 chromosomes instead of the usual 2). (i.e. Downs Syndrome is Trisomy 21). But what the doctor didn't say is that the babies typically have a wide range of defects, both internal and external, and the damage is bad enough that most of them don't survive to their due date, and those that do, pass away within the first couple of days or weeks.  A few have lived up to a year, and there is 1 documented case of a 30 year old with Trisomy 18.
        Wow, talk about being in shock!  We decided to say a prayer.  A sense of peace quickly came over us.  We are members of the Church of Jesus Christ of Latter Day Saints and we believe in life after death.  We also believe that children that pass away before the age of accountability (around 8 yrs. old), are automatically allowed to live with our Heavenly Father.  We are sent here to this earth as a test.  We believe that those who die before the age of accountability are so righteous that they don't require an earthlife test.  All they need is a body so that they can return to live with Heavenly Father.  We also believe that once we die we continue to do our Heavenly Father's work.
        This knowledge gave us comfort.  Even though we feel a sense of loss that we might lose our baby, we know that if he does happen to pass away that he must be one of our Lord's most valiant and righteous servants.  We know that we need to try and be the best that we can so that we can be worthy to live with our child again.
        So, in the meantime, we pray for this peace daily, and wait until the next ultrasound.