I am often asked my biggest challenges on being a mommy with 22q11 ds. I had to take time out to even wrap my head around if I had any challenges at all as everything seemed to come together after having our daughter for me.
My struggles I had with 22q11 ds my depression and anxiety have seemed to just completely go away lately. My biggest challenges now : accepting the fact that I have a "normal " daughter. At f first after Myranda's amnio results I was in major denial. I did not want to accept the fact she was free and clear of 22q11 DS after it was drilled and drilled into my head that if I did CHOOSE to have children, my children would more than likely be affected by 22q and also my Tetralogy.
Everyday I look at her I think... I did it I beat the odds how and why I am not sure, I just know that God was on my side and Myranda being 22q11 DS free was the reason she was giving to us after 5 years of struggling how we were going to have a family of our own and how we were going to figure out how to avoid passing on everything.
Is an amnio worth getting if you have 22q11 ds... YES!! it took a lot of weight off of our shoulders as I wished I was detected as early as children as now. I was not diagnosed with 22q11 Ds until I was 25 years old. I thought if Myranda does have it, I will at least know a head of time and have my ducks in a row when she arrives and know where to turn for the best care of her. I luckily did not have to use those resources I had lined up in case we needed them. Drs were even amazed she was cleared , but did educate me on the fact that if I choose to have a second child ( which Cardiologists of mine weren't allowing because of the current condition my heart has been in ) the second child could be affect and the out come may not be as mild as myself.
Believing that I did this without all the struggles we thought I would have carrying my own child is another challenge of mine. I did it, I conquered it and will now tell others that ask me for advise on pregnancies with CHD..all I can now say is listen to what your doctors tell you . I was told not to do it and to do it all over again I probably shouldn't have went through with the process , but I just wanted the chance to be able to put it behind me. My doctors finally gave in and willingly gave me the chance to become the mommy I am now.
Myranda if anything has giving me the ability to focus, concentrate , and even control my depression and anxiety. IF nothing else ever goes right in my life from here on out, I at least have her to go back on and say look what I did when others thought I would fail. People have in fact told me to my face I would fail as a mother because of my disabilities. I took that on as a challenge and am proving them wrong daily.
I do have my days where I want to break down and cry, but when I look at the sweet little miracle I was blessed with today I learned that everything just falls together for a reason. I may have failed at things in my past , but one thing I will not do missing pieces or not is fail at being a mom. Life is is so much simplar now. I feel more human and more complete.
I know life is full of challenges , but to me life with 22q11 and being a mommy has turned more into an adventure than a challenge. I surpassed one of the biggest challenges on just even becoming a mommy and I would not trade this adventure for the world.
Monday, June 2, 2014
Wednesday, May 28, 2014
Where Have I been and Why Haven't I been blogging?!?!?!
Where in the world have I been lately and what has been my excuse for not blogging?!?! Well , the last year or so has been crazy hectic. on August 26th 2013 Derek ( my husband ) and I found out we were expecting! it was an exciting time, but scary time , since I have tetralogy of fallot and 22q11 DS. We did not know what we were going to do , what road we were going to go down, but we both knew that even tho doctors told me not to have a child of my own because of my TOF, we at least wanted the chance.
It was a chance we did not know the outcome of, however we felt that God has given us this once in a lifetime opportunity in this point in our lives for a reason. I found out in Gulfport , Ms where Derek is stationed. I then finally got the courage up to tell my family as they had always encouraged me to adopt , because of the chances of passing 22q11 DS and TOF. I had a cardiology appointment in October of 2013 and knew right then and there Dr. Book would decide my fate of going on with this pregnancy or if we would have to terminate due to my valve pressures not being the best at the moment.
At this appointment I sat down with Dr. Book my cardiologist, and promised her IF at any given point if i got into trouble I would agree to terminate or we would take the baby early if able too. I also had agreed to a fetal echo and amnio as well. A lot of people may look down on me for this decision but in our best interest we also agreed to terminate if the baby had 22q11 , because of my husband being military and myself having 22q11 plus a complicated case of Tetralogy of fallot, we were unsure if i would be able to care for a child 6 hours away from home that had 22q11ds. I then was told by Dr. book that this was going to be a roller coaster and would not be an easy ride and I would have to come see her monthly and move back to ATL.
So, I picked up for the next 7 months and moved back home to ATL , GA where i am originally from and my husband had to stay behind due to being active duty military.
month after month it was appointment after appointment. I went for a fetal echo and to many answered prayers it came back negative that she did not have Tetralogy of fallot. I then sat and waited for the amnio to come back with the fish test and to our surprise it came back negative she did not have 22q11 DS. Many will ask me why or how this is even possible since I am a carrier of both. All I can say is that the odds played in my favor and that our little girl is a blessing.
at around 33 weeks i started to finally hit the roller coaster. Due to being on lasix's i began to have fluid issues and keeping fluid around the baby. my once a month appointments turned into weekly to monitor fluids. At my 35th week appointment my blood pressure was extremely high and fluids were back down again and I was admitted on March 5. On March 6th Our little blessing Myranda Grace Brown came into this world VIA c section at 2:15pm weighing at 4 lbs 10 ozs extremely healthy just tiny!
While Myranda was healthy and perfect, I on the other hand was struggling with fluids. I ended up staying in the hospital for 5 days due to having to drain fluids off so that it wouldn't add anymore stress and pressure on my heart.
People always ask me if i would do this all over again.. honestly I can say NO. Why? because it was a lot of strain not only b wing away from my husband , but having to worry about going into heart failure or all the other possibilities that could have happened that didn't. Another reason why I won't do this again is that I may not be so lucky the next go around because of all the strain the pregnancy did put on my heart, i may not survive and also may not have a healthy child the second round. I did it right the first time and certainly had God's blessing and hand on me for 8 months he never left me and answered every prayer I had. SO now with great pleasure I want to introduce to you our miracle Myranda Grace Brown .
It was a chance we did not know the outcome of, however we felt that God has given us this once in a lifetime opportunity in this point in our lives for a reason. I found out in Gulfport , Ms where Derek is stationed. I then finally got the courage up to tell my family as they had always encouraged me to adopt , because of the chances of passing 22q11 DS and TOF. I had a cardiology appointment in October of 2013 and knew right then and there Dr. Book would decide my fate of going on with this pregnancy or if we would have to terminate due to my valve pressures not being the best at the moment.
At this appointment I sat down with Dr. Book my cardiologist, and promised her IF at any given point if i got into trouble I would agree to terminate or we would take the baby early if able too. I also had agreed to a fetal echo and amnio as well. A lot of people may look down on me for this decision but in our best interest we also agreed to terminate if the baby had 22q11 , because of my husband being military and myself having 22q11 plus a complicated case of Tetralogy of fallot, we were unsure if i would be able to care for a child 6 hours away from home that had 22q11ds. I then was told by Dr. book that this was going to be a roller coaster and would not be an easy ride and I would have to come see her monthly and move back to ATL.
So, I picked up for the next 7 months and moved back home to ATL , GA where i am originally from and my husband had to stay behind due to being active duty military.
month after month it was appointment after appointment. I went for a fetal echo and to many answered prayers it came back negative that she did not have Tetralogy of fallot. I then sat and waited for the amnio to come back with the fish test and to our surprise it came back negative she did not have 22q11 DS. Many will ask me why or how this is even possible since I am a carrier of both. All I can say is that the odds played in my favor and that our little girl is a blessing.
at around 33 weeks i started to finally hit the roller coaster. Due to being on lasix's i began to have fluid issues and keeping fluid around the baby. my once a month appointments turned into weekly to monitor fluids. At my 35th week appointment my blood pressure was extremely high and fluids were back down again and I was admitted on March 5. On March 6th Our little blessing Myranda Grace Brown came into this world VIA c section at 2:15pm weighing at 4 lbs 10 ozs extremely healthy just tiny!
While Myranda was healthy and perfect, I on the other hand was struggling with fluids. I ended up staying in the hospital for 5 days due to having to drain fluids off so that it wouldn't add anymore stress and pressure on my heart.
People always ask me if i would do this all over again.. honestly I can say NO. Why? because it was a lot of strain not only b wing away from my husband , but having to worry about going into heart failure or all the other possibilities that could have happened that didn't. Another reason why I won't do this again is that I may not be so lucky the next go around because of all the strain the pregnancy did put on my heart, i may not survive and also may not have a healthy child the second round. I did it right the first time and certainly had God's blessing and hand on me for 8 months he never left me and answered every prayer I had. SO now with great pleasure I want to introduce to you our miracle Myranda Grace Brown .
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