Standing on Faith: Rest in Peace

Wednesday, April 29, 2009

Rest in Peace

Today was filled with mixed emotions because Allie's marker was put into place. What do you guys think? Isn't it just precious? I don't think it could have turned out any more perfect. I am not sure if you can tell in the pictures or not, but the butterflies and flowers are different shades of purple. Her sweet little angel foot marker puts a smile on my face, and that is exactly what I was looking for. Miller's Monuments was absolutely fabulous! They were so sweet and thoughtful. We know that alot of TLC went into her marker. We love that we have this for her now, and the only thing left is to put down the sod and get some flowers for her vase. At the same time I am filled with sadness because it makes everything so final. It is at times like this when my life feels so surreal, and I think to myself, "Is this really my life? Did I really lose my baby?, etc.." She was one special little girl, and I think her headstone fits the part.

Isn't her Little Foot Marker Just Too Cute!

11 comments:

Jfrank, April 29, 2009 at 9:36 PM: Wow! You both did an awesome job picking out the perfect marker for Allie. Seeing it for the first time immediately brought tears to my eyes but it also made me smile. It's so precious! Thank you for sharing this. You are both wonderful people and parents. From both of us, J&S
Robin, April 29, 2009 at 10:28 PM: Oh Susan, it couldn't be MORE perfect! The footstone is just the perfect little touch! You can tell that every detail was lovingly chosen, planned, and created. Such a perfect marker for such a perfect little girl!
Thank you for sharing.

{{{HUGS}}}

Robin :o)
Gramma, April 30, 2009 at 7:00 AM: It's perfect... Our angel.
Gramma
Jed, April 30, 2009 at 8:50 AM: What a beautiful headstone. It could not be more perfect. The footstone just makes it complete. What a beautiful tribute to your precious angel. It shows all the thought and love that went into selecting it.
Love,
Lynne
Susan and Michael, April 30, 2009 at 4:17 PM: You all are just too sweet!!!

Love you guys :)
Susan
Tracie, May 1, 2009 at 9:28 AM: What more can I add (through tears and a smile)? It's just beautiful and perfect....just like our Allie angel. Though we don't talk as often as we should, just know that We love you and you are in our constant prayers!! (PS. Advice from his sister...Don't give Michael too big of a head...talking about how sweet, good and handsome he is - his grin cannot get any bigger! ha, ha.). Love, Tracie
Mrs., May 1, 2009 at 11:15 PM: I love the text about the fleeting beauty of a butterfly - absolutely perfect!
Susan and Michael, May 2, 2009 at 9:59 AM: Thanks,
We thought that poem was the perfect representation of her time on Earth with us.

Susan Brewer
Gail The Reading Lady, May 2, 2009 at 10:36 PM: A beautiful tribute to a beautiful little girl. Thank you for sharing with us.
Love ya,
Gail
jengallahar, May 3, 2009 at 6:18 AM: This is so beautiful, Susan. Thinking of you often!
Anonymous, May 7, 2009 at 5:54 PM: I have to say this is the most beautiful marker I have ever seen!! The poem fits her so perfectly:) You have and will always be apart of my thoughts and prayers:) You have really made an impact on my son Devan and he is truly never gonna forget you and your beautiful angel Allie. May God Bless you and your sweet family:)
Love y'all,
Jennifer and Devan Miller

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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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Wednesday, April 29, 2009

Rest in Peace

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