The Unofficial Harry Potter Cookbook and Cooking through My Grief

Taking it one recipe at a time. 2013 will be mainly focused on "The Unofficial Harry Potter Cookbook," by Dinah Bucholz, and how doing what I love, cooking, being with my family and reading Harry Potter will help me process my grief associated with loosing my 3 week old daughter, Ruby, on November 18th, 2011.
Join me for a "culinary magical masterpiece" throughout 2013!

Friday, June 24, 2011

My Newly "High Risk" Pregnancy Diagnosis




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...:)

8 comments:

  1. Amber,
    I know it's been a long time, so sorry for your news. Just so you know heart conditions are very common for DS, not that it makes it feel any better for you to deal with. My son has a lot of severe special needs, and I find that knowing what is common sometimes help, but what I really need is support and people to talk to about it. Check here: http://kidzorg.blogspot.com/p/new-diagnosis.html and do some research on DS, so you know what to expect. These children are more precious than most can understand until we are entrusted to their care!

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  2. I love you so much!!! I know your sweet baby girl is going to change everyone's lives for the better. We keep praying for all of you. I know it will be difficult- and you've already faced some big challenges, but I am amazed at your strength and faith and really feel this sweet spirit couldn't come to a better family. I'm still looking for that perfect gift to give you along with the brown sugar (ha, ha). And like I told you before-- there will be more love for your sweet baby girl than you know what to do with... DS kids are always the favorite! :) I just want to give you another big long hug--I've cried several times since too, but am already so excited to meet and hold my PERFECT little niece. Love you always! We miss you already, and are so glad for the time we got to have with you when you were here.

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  3. I have to say ditto to Andrea's comment... I'm afraid Rosie will have to compete for favorite status... I think Baby Girl Gossie will be favorite!! I'm so excited, I love DS kids, they are the sweetest most perfect kids ever!! I think this baby will have no problem fitting into this family, she will have way more love than she will know what to do with!! I love you guys and can't wait to come home to visit for a while!! I'm looking forward to many Rosie and Shell dates... I have lots of plans :)

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  4. Every time I read your blog, I just feel so much love for you! I wish we lived closer so that I could share these experiences with you in person! You are such an amazing person and I'm so glad these hatton men have such good taste in who they add to an already incredible family! -bethany

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  5. Amber, I cried as I read this post...because I know this baby girl could not come to a more amazing mother and father. She is so lucky to have you and I know she will bless your lives in more ways than you know. I love you so much!

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  6. When we were having complications with one of our pregnancies we were told she possibly had DS and I hoped she was (versus the other possibilities they gave) because Downs Syndrome babies are the happiest, most forgiving, kind, and loving children I've ever met. We are praying for you during this faith-building experience. The time we were dealing with the complications of our pregnancy was the closest I have ever felt to the Spirit and the time when I truly felt like the Atonement was for me and my pain. I hope you similarly find strength through the Savior.

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  7. Oh Amber... I love you! This baby girl is going to be beautiful.. and you are going to love her so much. I have no doubt that she is going to be such a blessing in your life. We will keep you in our prayers - PLEASE keep us updated.

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  8. Amber, one thing I have always admired about you is your ability to love and the trust you place in our Heavenly Father. Growing up, you were always a positive example to me and I love spending time with you. I am excited for the journey you will be taking with your new daughter. I know that she will feel so much love in your home that her life will be a beautiful masterpiece. When I was in High School, we had a boy in our class with Downs Syndrome. He was completely trusting of all. Everyone knew him, he had more friends than anyone I know. His favorite activity was Friday night football games and he was called the Fremont High SUPA-FAN! At an assembly at the end of the football season, the football captains gave this unathleticly inclined boy his own letterman jacket. He was so excited that he began to cry, right there on the stage. The ENTIRE audience was so touched by this that there could not be found a dry eye amongst an auditorium full of teenagers. It was a blessing to be a part of that day. You're daughters life will touch so many, as does your life. She will be a bright light in all our lives and I am excited to meet her. I love you Am!

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