Wednesday, March 15, 2017

Hayden Update

God Helps the Helpless    



God gives grace (favor and blessing) to the humble.


-1 Peter 5:5


 



Last Wednesday was a tough day to say the least. Not only did Hayden get three shots at her two month checkup but she also went to visit her Pediatric Surgeon. So to say it was a long exhausting day is an understatement. Most babies tend to cry and get fussy at night and into the evening hours or when they are tired, hungry, or need to be changed.  Hayden is not "most babies." She tends to cry in pain at all hours, sometimes every hour and a half  and it is very difficult at times to figure out why. Not only is she not getting any sleep at 10 weeks but we aren't either. It seems like sleep is so far in the distant future and it is heartbreaking to see your child in pain and not able to figure out how to ease her pain, and make it all better.


Not only have we consulted numerous Specialists but we recently consulted her Gastrointestinal Doctor to figure out the problem. We have switched her supplemented formula, switched mom to a dairy-free and soy-free diet (which by the way is absolutely miserable), increased her feeds, and increased her antibiotics and medicines. Now we are just trying to figure out the process of elimination and take it day by day.
Last week we also took Hayden to see her Pediatric Surgeon and after consulting with him and her Gastrointestinal Doctor they both recommended scheduling Hayden for surgery to insert a Gastrostomy Tube or G-Tube. Right now Hayden has an NG tube and is fed on a pump over the course of an hour every three hours. She is constantly pulling her NG tube out during feeds, coughing, choking, and it seems to always irritate her throat (and Mom and Dad are both tired of putting it back in). With the G-tube surgery a tube would be inserted directly through her abdomen into her stomach. Although she will have to be readmitted to the hospital,we are hoping this will help her receive proper nutrition and ease her pain.


Tim and I have gone back and forth in our decision regarding Hayden's surgery as she will be put under anesthesia and admitted back to Levine Children's Hospital for at least two days.  She will be monitored one day prior to the surgery and at least one day following depending on her stats and how she does coming off anesthesia.  Most of this time will be spent learning how to care for Hayden with cleaning the area so that it does not get infected or clogged and learning how to insert the tube if it falls out of place. We are still waiting for her abdominal and pelvic ultrasound and to hear if she has been cleared by her Cardiologist for surgery, but have officially scheduled her surgery for March 30th. At this same time we plan on having her omphalocele removed as well.

We truly hope this will make a difference and continue to ask for prayers and guidance for our daughter.   I believe it takes faith to get through anything in life especially the low days when you think I am never going to get through this. If it were not for our faith and the love and support we have received, Tim and I would not be able to get through this last week or these past few months. God does not help those who help themselves but rather helps those who cannot help themselves. He helps the helpless, those who believe, and those who are dependent upon him and his word. All we can do now is believe that he will help our precious daughter and pray that Tim and I  are making the right decision for Hayden.

Wednesday, March 1, 2017

Trisomy Awareness Month

Trisomy 13-Defying the Odds at 8 Weeks    



So God created mankind in his own image, in the image of God he created them; male and female he created them.

-Genesis 1:27

 


Today our daughter Hayden is 8 weeks old.  Although that may not be a huge feat in everyone's eyes, to those that know our story it is a true miracle. Hayden still continues to defy the unfair odds of Trisomy 13 that have been stacked against her since before birth but we are blessed each and everyday to be on this amazing journey with her.

This month is Trisomy Awareness Month and because there is no proven cause or genetic predisposition for both trisomy 18 and 13, awareness ensures that all families can provide support and sympathy to those who are affected.  Trisomy refers to an extra set of chromosomes present in every cell of the body. It is a disorder of the chromosomes and genetic makeup in which infants have 47 instead of the usual 46 chromosomes. Trisomy can occur in any chromosome and the most common type is Trisomy 21 (Down Syndrome), Trisomy 18 (Edwards Syndrome) and  what Hayden has, which is Trisomy 13 (Patau Syndrome).

Infants born with Trisomy 13 are born with different developmental "abnormalities" or "malformations" and physical anomalies. 80% of infants with Trisomy 13 have a congenital heart defect with many having breathing difficulties, apnea and hearing problems, 60% have a cleft palate or lip and Holoprosencephaly or failure of the brain to divide properly, 30% have kidney defects, and 10% an omphalocele. These are just a few predispositions infants with Trisomy face and all of which Hayden has and continues to battle each and everyday.

Phrases like she is abnormal,  incompatible with life, or has a 10% chance of survival to reach one year of age have lost their sting.  Words that should describe Trisomy children should be unique, perfectly imperfect, special, resilient, and compatible with life. Individually. although we all have our obstacles, having an extra copy of a chromosome  makes each and every Trisomy child unique and that much more special.

I believe that we were all created in his own image and that we all have a unique footprint.  I am constantly aware of all of the negativity that surrounds us and some days it does get to me. Although, it is A LOT harder than I ever thought to be a Trisomy Parent, I can never ask the questions why me? why her? why us? Because our journey and Hayden's is not for me to understand but for me to accept and trust.  Everyone has a unique journey but it is the path that God has created for you.

All I ever wanted to do with this blog was to share our journey and spread awareness.  I never knew about Trisomy until Hayden was diagnosed.  Now as a mother and fellow Trisomy Parent it is my priority to spread awareness.   We need to open our eyes and get comfortable with difference. So this month open your eyes to those in need, to those that are unique, and be thankful for what you are and grateful for what you have been blessed with on your own personal journey.