Standing on Faith: January 2013

Sunday, January 13, 2013

Just a Date

January 14th...Just another ordinary day to most, but it is a date that sends daggers straight to my heart. It is amazing how just a date on the calendar can bring you to your knees, but that is exactly what this date does to me. It just holds too many painful memories for me, and every year when it rolls around it just reminds me of how hard it was to say goodbye to that precious little angel. Allie's final days were tough to witness, and it is not how I like to remember her. But, for some reason on this date, my mind takes me right back to those last moments in that hospital room. It is like I can block them out all year long, but when January hits my barrier crumbles. Everything about this time of year causes those memories to flood my mind.

Losing Allie was the most difficult task I've ever had to face, and it completely changed me. It left me feeling depressed and hopeless, and I still struggle to find that spark that I once had. As tough as it is to deal with, I have to find a way to keep going. So, how do you do it? How do you keep the strength to hold onto life? Well, I have two blessings on Earth that need me and one more on the way, so that is a big part of what keeps me going. Many, many, many prayers is another. Holding on to the happy memories that we shared with Allie is a huge help as well. I love thinking about her in Heaven and imagining what she might be doing at this age and stage of her life. Is it similar to what she would like to do on Earth at her age? I like to think that she plays a big part in our lives still. I wonder if she had anything to do with our new little, surprise, blessing on the way? She's probably laughing about that one. :) She would have been starting Kindergarten in the Fall, so I like to think she sent me a bundle of joy to keep my mind occupied. Who knows?

So, this is the battle in my everyday life...Let this horrible depression take me down and keep me in bed all day long, or dig deep to find happiness that I can hold onto to get me through one more day. Even though dates like this are tough, and they bring up a lot of bad memories that I don't like to think about, I can still find happiness in her story. It's just a date, and you can't appreciate the good without the bad, right? That depression still kicks my tail some days, but I like to think that I'm doing well.

Thinking of you today and always, Allie! Sending some extra butterfly kisses your way. I love you and miss you.

What is Trisomy 18?

I would say that this is probably one of the most difficult disorders to try to explain simply because every case is different, but I would like to try my best to explain T18 in my own terms from my personal experiences and research I have read. For the most part, unless the child has major physical disorders or you know the markers to look for, T18 babies look perfectly healthy. Most people would probably pick up on their small size and possibly their low set ears, but some could easily go undiagnosed if it was not caught before birth.

T18 is a chromosomal disorder, also known as Edward's Syndrome. There are three different forms: Partial, Mosaic, and Full. In the partial and mosaic forms of T18 only a portion of the cells are affected, therefore having a greater chance to thrive. Allie had the most severe and most common form of T18, the full version, which means that every cell in her body was affected. When the baby is forming, somehow the 18th chromosome picks up an extra copy. Instead of only having two copies of the 18th chromosome, there are three copies. It was nothing that the parents did or didn't do to cause it to happen. This extra matter in the cells causes major complications during development. There is no way of knowing exactly which areas were affected the most or to what extent, so there is no way of knowing what complications each individual may have until further testing is done.

Even though each case is unique, there are many similarities that most full T18 babies have. Most have some type of heart condition (Fortunately Allie's heart condition was not serious, and she was able to live without heart surgeory~ others are not as fortunate). Some of the physical features they may have are small weight, low set ears, small mouth, tiny nasal passages, tiny ear canals, clinched fist, index finger overlapping middle finger & pinky overlapping ring finger, deformed chest, prominant nose, short big toe, and a small head due to their brain not developing to its full size; of course, since their brain does not develop to its full size this causes many other issues. Since every cell is affected in full T18 babies, they could possibly have major malformations with their internal organs. I know it is common for them to have kidney problems. There have been some reports of inverted colons, malformed intestines, esophogus problems, underdeveloped lungs, etc. We did not go exploring with Allie to see exactly what other internal complications she could possibly have. We figured if everything seemed to be working fine that it was not necessary to put her through any further testing.

The reason most parents are faced with difficult decisions is because these babies are not just a baby with a heart problem. You cannot just do heart surgeory and fix them. I would say the biggest complication is the brain. Your brain tells you to breathe, swallow, move, etc. Since T18 babies' brains do not fully develop, that means the automatic sensors that control the body did not fully develop either. Only God knows when this sensor will not be mature enough for the baby to keep thriving. Just like in Allie's case, it did not matter how well she was doing, when her brain was no longer able to send out the proper signals to the rest of her body, she was no longer able to thrive.

There is no way of knowing how long each T18 baby will live. The life expectancy varies for each individual case. Some are not even able to make it to birth, and the ones that make it to birth usually don't live to see their 2 month birthday, but there are a few who are able to thrive for years. Most of their lives are counted in days. These children are such a blessing to know and love, and I feel very strong that each one deserves the chance to prove how long they can thrive in this world. I hope that this information gives some help in further understanding Trisomy 18.

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Sunday, January 13, 2013

Just a Date

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