Standing on Faith: July 2009

Tuesday, July 14, 2009

6 month Angel Day

Wow, 6 months. Our precious baby has been in the arms of Jesus for half of a year. I know I'm not supposed to, but it is really difficult most days to suppress my feelings of jealousy that she is not in my arms. Well, I guess it is more of a longing to hold her again rather than being jealous. I really miss her. Some days are still harder than others, and I cannot always pinpoint why, but I have realized that time has allowed us to have more good days than bad days. We are getting ready to make another beach trip and I am hoping that this will do us some good. I'm trying to focus on the positive instead of the negative things that depress me, like: How much I would have loved for Allie to be going with us, thinking of the things she might have been doing at the beach at almost a year old, thinking that family beach photos will never be the same, etc... My heart just hurts and I wish that things didn't have to be this way. We will be away for her 11 month birthday and I will not be able to post, so I am going to go ahead and send some more birthday butterfly kisses her way. Happy 11 months baby girl in advance, and I wish you were here with us to celebrate it at the beach! Thank you again for all of her Birthday Butterflies. They are absolutely spectacular! You have all been so sweet helping us through. We have one month left for anyone that still wants to send Allie a butterfly wish for her birthday. Just click on her button to the right to connect you to the post with all of the details. Thanks again.

Great Fourth

Well, I have been keeping myself so busy lately that I haven't even had a chance to post about our 4th of July Holiday weekend. Honestly, prior to the holiday I had built up a lot of anxiety, but like I have stated so many times before, "God is Wonderful!" He knows our every need and exactly what to do to take care of us. Throughout our entire grief process with Allie, He has allowed our emotional struggles to see-saw back and forth so that one of us could be strong while the other was falling apart. Of course, I have done most of the falling apart while Michael has been the strong one, but lately God has been with me and allowed my emotional breakdowns to take a back seat so that I could be strong for Michael and help him.

The week before the fourth did cause my emotional see-saw to fall down again, because as I stated before I had some anxiety built up about this past weekend. For those of you that do not know, I had several baby cousins that were born around the same time as Allie, and this was going to be the first time I had seen them since Allie passed away. Please let me remind everyone that I do not get upset because there are other babies. Babies, especially the ones that are Allie's age, just remind me how much I am missing her and how much I wish she was still with me. Anyway, I had this horrible fear that I would not be able to contain my sorrow and wind up ruining every one's holiday. God knew better. He was with Michael and me every step of the way, and we had a fabulous 4th of July. Michael and I talked about how much fun we had, and how emotionally beneficial it was for both us. It has been an extremely long time since we have felt happiness, and it felt so good to be filled with laughter and surrounded by family and friends that love us. It was an awesome day, and we didn't take a single picture. Guess you will just have to take my word for it :) I hope your fourth was as great as mine!

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.

Allie's Slideshow

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Tuesday, July 14, 2009

6 month Angel Day

Thursday, July 9, 2009

Great Fourth

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