Friday, June 24, 2011
We finally have moved into our house and just got our internet hooked up, so I am able to get a bit caught up on here, for anyone who is still interested in my highly unpredictable life! I guess first off I should let you all know in case you didn't that "ITS A GIRL" And we are very excited to have another one!!!
2 weeks ago I had my second check up with the Maternal Fetal Medicine Doctor (a.k.a High risk dr's). When Brian and I were walking from the parking garage into the office I told my husband that there is no way in the world I am getting an amniocentesis, I didn't want one...When we were walking back to our car after the visit I had had a change of mind and had done an amniocentesis. What had changed my mind? Well, this doctor visit things were a bit more sure as far as my baby definitely has a heart condition called Hypo-plastic left heart syndrome. Here is a link about this defect if you are wondering what all is involved with this diagnosis and also what exactly it means: http://www.mayoclinic.com/health/hypoplastic-left-heart-syndrome/DS00744
The doctor also was very concerned that our baby had down-syndrome, because of a few things she saw in the ultra sound. She was very adamant that we get an amnio to find out for sure because our window for an abortion was getting very small...we of course informed her that if it was down-syndrome or not we will carry this baby until full term and give her all of our love and guidance through however long her life is. Still, the doctor left for a few minutes to discuss what we wanted to do. I still didn't believe that we would have a down-syndrome baby because I assumed it was genetic and on both my side and my husbands we don't have really anyone with this disorder. As I was sitting on the Doctors examining table and discussing with Brian the pro's and con's of this I felt that for me to prepare myself for a baby that is down syndrome it would be best if I did an amnio. I knew that if I didn't know, then I would probably get lazy and not prepare myself the best way that I can for this new addition to our family. So we went a head and did the amnio. It wasn't as terrible as what I had read on-line. It felt like a really long bee sting, and I got just the tiniest amount of cramping on my left side but other than that the physical pain was fine. When the doctor does the amnio they use ultra sound so you can see the baby and make sure that they don't get poked. Our baby was so cute, when she noticed that something had entered her safe little sak she swam in that direction and was trying to figure out what it was...She was so cute!
As we left the doctors office the weight of everything we knew about her heart and the probablility of downsyndrome weighed heavily on both of us! I was sobbing before I made it out of the parking garage and the rest of the day. Honestly I didn't know how something like this could happen to us, it is just so unexpected and I truly felt that my Healthy Baby Girl had died, and I had no idea what I was going to give birth too in a few short months. Thank heavens for wonderful friends and family who fed us that day, cried with us, and let us know that no matter what they would support us through everything and love our baby girl, even if she did end up being down syndrome.
Thankfully my brother was getting married a week from that experience, so I was able to fly out to Utah with Rose and spend time with my Parents, siblings, and extended family members and as a week passed I had convinced myself that my baby, besides her heart issue was fine. Last Friday I was driving through Logan canyon with my sweet sister-in-law, Andrea to go pick up my Husband from the airport. He was able to come out last minute for my brothers wedding. In the middle of the canyon I received the phone call that I had almost forgotten was coming. "Hi Amber, this is Dr...We got your test results back and your baby has Down-syndrome. Do you have any questions?" Yes, I have a million and one questions and I could not remember a single one of them...So, after a very short conversation with the doctor I hung up and Andrea and I started to cry, and we continued to cry the whole way to the airport. I was so grateful to be with Andrea at the moment because if I was alone I don't know what I would have done. She held my hand the whole way through that canyon and honestly it was one of the nicest things that anyone has done for me in a time of despair and need when words to explain what you are feeling are non-existent. Now my baby truly had died. I have no idea how long a baby with down-syndrome and this particular heart issue will live and I want so badly that she can be born healthy and strong just like my baby Rose.
When we got to the airport Brian was there and I jumped out of the car and hugged him and whispered through my sobs that our baby has downsyndrome, and we just stood there hugging each other, crying, not know really what all of this means, but that this baby will need a lot of attention and help through her entire life. I guess we were both feeling very overwhelmed! That night we told my parents that our baby does have down-syndrome and they both reassured us that no matter what our baby will be loved and accepted into our family and that they were excited to have her join us all.
The next day was my brothers wedding which went very well! There was a great turnout, and a lot of visiting. I cried with multiple Aunts and Uncle's and received the same confirmation that no matter what, our baby will be loved and accepted and prayed for. I feel that there couldn't have been a better place for me to be when I received the call.
Apparently news spreads incredibly quickly because when I got back to Kentucky a lot of my friends already knew that I was now placed in high risk because of the heart issue and down-syndrome. I even had multiple people call me who I have never seen or talked with before who have down-syndrome kids. I was able to find out a lot more about this and I now feel a lot more comfortable with my baby's condition. One lady told me that if the Lord came tomorrow and said he would heal her Son she wouldn't want him to do it. The way that their DS baby has changed her and her family has been such a blessing to them.
So, how do I feel today? I still cry periodically but not because I don't want my baby, I just cry because I am a Mother and that is what Mothers do over their children. I am much more at peace with DS. We found out the Louisville has an awesome program for family's who have kids with DS. I feel like as far as that is concerned we will be taken care of and that someone will be there to answer our questions and calm our fears. I am so nervous about the heart issue, and have no idea how much time we will be spending in the NICU after baby girl is born. I no longer feel like my baby has died. I feel like I did when I was expecting Rose, I am excited to add to our family, and the little girl I am carrying is precious and important to us. I look forward to meeting her and welcoming her into our hearts, home, and family!
Thank you for all of your prayers and thoughts for us this year, it truly has been quite the journey so far, and its only June...:)
Sunday, June 5, 2011
"Stresses in our lives come regardless of our circumstances. we must deal with them the best we can. But we should not let them get in the way of what is most important-and what is most important almost always involves the people around us. Often we assume that they must know how much we love them. But we should never assume; we should let them know. Wrote William Shakespeare, "They do not love that do not show their love." We will never regret the kind words spoken or the affection shown. Rather, our regrets will come if such things are omitted from our relationships with those who mean the most to us."
-Thomas S. Monson, "Finding Joy in the Journey", Liahona, Nov 2008, 84-8
-Thomas S. Monson, "Finding Joy in the Journey", Liahona, Nov 2008, 84-8
Posted by Amber at 2:03 PM
Wednesday, June 1, 2011
Today is not only our second day in the hospital, but is also mine and Brian's 4th Wedding anniversary. We are spending it sleeping in separate beds in the hospital and trying to convince our crazy 2 year old to go to sleep. Brian was sweet and got a dozen red Roses and a balloon, and his Dad bought us dinner from Olive Garden, we also danced to our song while rosie was asleep...so romantic :)
As far as Roses recovery is concerned, if you saw her right now you wouldn't even now that she had surgery yesterday and had a tumor and her ovary taken out. She was woken up at 6 a.m. by a doctor and has basically been an energizer bunny all day. We found a toy room around the corner from our room and have spent several hours there today while she walked the halls pushing all sorts of toys.
She started to get worn out around 2 so I tried to lay her down for a nap and she couldn't fall asleep, so I asked for a wagon, put a pillow in at and we wandered the halls for a long time...finally around 5 she fell asleep in the wagon and slept for a few hours. and now at 10 pm at night she is not showing any signs of stopping and going to sleep, so I think we are in for a long, late night. We will be going home tomorrow morning sometime. I am so glad that Rose is so resilient and recovering so quickly. I am so amazed at how good she is doing.
Posted by Amber at 7:02 PM