Standing on Faith: 5 Month Angel Day

Sunday, June 14, 2009

5 Month Angel Day

Today marks five months since my precious Little Angel spread her wings and entered Heaven. She has now been an angel longer than she was with us here on Earth. Something about that thought disturbs me. I'm hurting and missing her terribly today. My fear, of course, is forgetting the details. All I have left is her memories, and oh how grateful I am that God gave us enough time to create those wonderful memories. I miss snuggling with her at night, I miss rubbing her soft hair against my cheek, I miss seeing her smile, I miss holding her, I miss feeding her in her unique way of eating, I miss seeing the look on her daddy's face when he held her in his arms, I miss seeing her big brother smother her with hugs and kisses, and along with many other things I miss constantly kissing her sweet little head. Having the memories still doesn't take away the pain of missing her, but we are thankful for them because they were all memories that we were never supposed to have. We miss you baby girl, and we are thinking of you today and always. We love you.

3 comments:

Robin, June 14, 2009 at 12:07 PM: I've been thinking and saying many extra prayers for you this weekend! Call me if you need anything!!!

{{{HUGS}}}

Robin
Aimee, June 14, 2009 at 4:31 PM: I am thinking of you. Allie is not forgotten. What a special little girl she was...and is!
Jed, June 15, 2009 at 1:04 PM: I am thinking about you and praying for you. May the memories of her time with you give you strength and help you get through this most difficult time. She will never be forgotten.

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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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Sunday, June 14, 2009

5 Month Angel Day

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