Standing on Faith: Just feeling blue.

Friday, February 13, 2009

Just feeling blue.

There are no other words, besides just feeling blue, to describe how we feel. Michael and I both have been struggling with our grief, and we are full of such sorrow. I have so much anxiety built up about this upcoming Saturday, because it will mark one month that I have not had my precious baby to hold in my arms and it will be the first Holiday that she has missed. Oh, I miss her so much, and it is so hard to explain how I even make it through each day. It is almost like my body is an empty shell, and my mind is someplace far away so I do not have to deal with the pain. I think God only allows the pain to come a little at a time, because I really don't believe we could survive if we felt it all at once. We are actually going to try get away this weekend. We think it will do us all some good to just get away from it all. Mason is excited, so I hope that it will be a good trip. Thank you for all of your uplifting messages and emails, and please continue to pray for our family.

3 comments:

Robin, February 13, 2009 at 8:00 PM: Oh Susan (and Michael), I am so sorry that you are having such a difficult time. If we could just take your burden away from you, we would. Just know that we are praying for you every single day!

We love you!
Marty and Robin
Anonymous, February 14, 2009 at 6:35 PM: Susan,
My heart aches for all of you. I wish there was something to say or do to make this easier. You are on my mind. You are still a shining tower of strength. I look forward to getting to see you each day when you come back to work. I hope you all have a great weekend.
Love you,
Kim O'Connor
Anonymous, February 14, 2009 at 11:08 PM: I just want you to know and you already do that that the insight that children have is so much more keener than ours. I am so glad that Mason "gets it" and he is able to have loving parents like you to explain things and to understand that there was nothing you could do except love Allie and that you did! You all did and now she is in Heaven healthy and happy. No more sickness.

I think of you all everyday. I am in contact with Linda so please give Sue a hug from me. I wish I could give you all one. So I will just send well wishes to you and let you know that I pray and think of you daily.

Love you,
Amy Reaves

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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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Friday, February 13, 2009

Just feeling blue.

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