Standing on Faith: 7 months

Thursday, March 19, 2009

7 months

Happy 7 month Birthday to my sweet little angel in Heaven. Can you believe that my baby girl would have been 7 months old today. I am consumed with thoughts of all things she might have been doing if she were still here and did not have T18. When I look around at all of the other babies around Allie's age, I get a deep pain in the pit of my stomach. I am reminded of how much I miss her and of all the things that I will never get to see her do. If she were still alive and healthy by now she would probably be sitting up, crawling, cooing, smiling, laughing, and doing all of the other wonderful things that a baby should be doing. I should be snuggling her in my arms and kissing her sweet little head. It hurts so bad not to be able to kiss my sweet baby. The pain is unimaginable, and I would give anything to feel her soft, fuzzy hair nuzzled up against my cheek again. I'm so sorry to lay it all out there, but as I guess you can probably tell, today has been really tough and it helps me to write out my feelings. This time of the month is always so emotional for me because her Angel day is only 5 days away from her birthday. I am filled with grief, and a lot of days I am not sure what to do with it all. Most days I keep my mind away from the memories because I feel that if I am not thinking about it, then I will not hurt as much. Not too sure how well this is working out for me because if I ever sit still and allow my mind to be filled with all of the memories, then I have a complete meltdown (Like today). Oh well, I don't think there can be a perfect way to deal with grief. For the most part, you find a way that you are most comfortable with and you push yourself to just keep going. If it helps you to put on a fake smile and tell everyone that your fine, even though your devastated on the inside, then so be it, you made it through another day. Time will help, and I have slowly began to realize that it is okay to let yourself escape the pain from time to time. I can tell that I am starting to heal little by little, because I have recently found myself getting engrossed in conversation with others and actually truly laughing (I think this is a HUGE step). Mourning for your Child is an extremely difficult journey, and the one thing that I know for sure is that it cannot be made without God.

I will post soon about my Spring Break, because even though it may not seem like it today I have had a good break and shared some wonderful moments with Mason and other family and friends.

On a technical note~ I have had several people either tell me, email me, or post on Allie's Trisomy page that they are not able to leave messages on the blog. I am not sure why this is happening, but the only advice I know to give is to maybe try clicking the bubble next to one of the other choices besides Google account. Had anyone else experienced this, or do you have any advice to share? I would greatly appreciate it.

3 comments:

Robin, March 19, 2009 at 9:22 PM: I am so sorry you are having such a rough day today! Hopefully, they will eventually become fewer and further between!
I am glad that you have been able to have some good laughs and conversations....YOU DESERVE THEM!

{{{{{{HUGS}}}}}}

MUCH LOVE!
Robin
Cathy, March 20, 2009 at 8:31 AM: It breaks my heart to read how you feel, but you were such a sweet mommy who loved her little girl so much.I can only cry when I read your writing and then I look at that sweet picture of Allie. I am praying for a few that ache I know you must feel in your arms. I don't pray that it go away, I just pray that there be some comfort to it that you love her so much in her time here on Earth til you meet again.
Super B's Mom, March 26, 2009 at 11:48 AM: My heart goes out to you during this time of grief...it is obvious that you are an amazing mother.

You will be in my prayers.

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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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Thursday, March 19, 2009

7 months

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