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...:)

Sunday Quote

"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

Kosair Childrens Hospital Day #2-Happy 4th Anniversary to Us!

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.

Kosair Childrens Hospital-Day 1

Today was our big day! Brian made it back from his overseas trip yesterday and today we are in the hospital. The above picture is of Rosie before she went back for surgery. They had a room full of fun toys that were very entertaining for my little two year old :) They gave her some silly juice and then took her off to the OR. We didn't see her from around 2:30 til around 6 p.m. They had the nurse call us every hour and give us details and let us know that everything was going ok. It was very comforting to have that contact with them! After the surgery her surgeon came in to chat with us about how everything went. She told us that things went well. They took out the left ovary, Tumor, sists and took care of a belly button hernia. She told us that they were able to keep her left tube which will be helpful when Rosie starts her own family. The Dr. showed us a picture of the tumor they took out of her tummy and it was shocking to see how huge it was! It looked to me to be about the size of a baseball. It ended up being 6 cm at its widest point. It was so sad to think that this huge thing has been hanging out in Rosies tummy for so long! The surgeon also told us that they only find children with these type of tumors every 4 to 6 years. I guess we were just the lucky ones! I guess the greatest news of all is that the tumor was not cancerous!!! We have been so worried! I don't know if I could emotionally handle that right now!
They wheeled Rose up to her hospital room where we were able to see her for the first time since surgery. She was so sad looking and kept grabbing her belly and crying and breaking mine and Brian's hearts. I really wish that I could just take all of that pain away and make her be healed!!! She seems to be doing really well though. She has been able to keep down juice, and jello and wanted more to eat so I think that her recovery will be pretty quick! They may send us home tomorrow, but I am kind of hoping that they will keep us until Thursday, only because I think that the first 24 hours are going to be rough and it would be nice to have a nurse around to help us out!!!
I am so tired! It is time for bed now. I will let you all know how tomorrow goes! Thank you so much for your thoughts and prayers for my family. I truly have felt strengthened and encouraged through this highly stressful time!

My Heartbreaking Memoir

Unfortunatly sometimes life throws you a curve ball, one or in our case two of them that are totally unexpected! So, I guess I will start with Rose...as mentioned in an earlier post on here she was diagnosed with precocious puberty earlier this year. We went ahead and had a surgery done on her earlier this month to help prevent any further issues and to regress her already present physical changes. We thought everything was good and great until a week ago when she started bleeding again. I assumed it was normal, but called her endocrynologist just to give him the heads up. He called me a few days later a little concerned that something else was going on and so he scheduled another hospital visit for an ultra sound and lab work. He also set up another visit with a Ped. OB, thinking that perhaps we addressed the wrong issue and that something really is going on with her ovarys. So, yesterday my Mother, Rose and I (Brian is in Russia for a trip for his MBA this week) went back to the hospital for these tests to be done. Rose had a great experience this time and the nurses that worked with her were excellent! We have our appointment on Thurs. with her OB and we will get the results then, except for that her endo called me today with not so great news from the reading on Rose's ultrasound. He said the the ultra sound doc found that where her left ovary should be there is a 4 cm tumor that the ob will be talking with me about on thurs...this also means surgery in the very near future, again, to get it taken out. We are praying that it is not cancerous. Just today Rosie started complaining about her left side hurting...I was going to wait to post anything about this but I figure we need prayers right now for us that Rosie will be able to be healed and that all of her doctors will be able to figure out everything that may be going on that shouldn't be in her body, and that they will know how to fix it! So, I thank you for your prayers for us right now!
As for curve ball #2 last thursday I went to a maternal fetal care office in the hospital because they said I may be having a baby with down syndrome and they wanted to investigate further. It turns out that I have a 1 in 6 % chance. Which after that office visit I am still not sure if the baby is downsyndrome or not because we didn't do an amniocentesis, but the specialist doctor thinks that something may be wrong with the baby's heart development and Iwill be going back in 3 weeks for a check-up. I went to my OB today and she was concerned about what the specialist had told her. Luckily the heart condition is fixable but it will be a long road. I will have to deliver downtown instead of at the hospital I was wanting to deliver at. The hospital down town is connected to the childrens hospital were the baby would be in the NICU and where pedo heart surgeons are readily available. Of course all of this is somewhat of a scientific guess right now because the baby's heart is so tiny the doctor couldn't get a great look at it. We will know for sure by the time I am 22 weeks along, until then I hold my breath! There is the optimistic approach that I am trying to take where I just believe that everything is ok with my baby and that it will be born healthy and strong on the due date...
So, this is my heartbreak right now. I will keep you updated on what is going on with Rose when I know more and also with the baby in my belly. I guess right now I just ask for prayers so we can be strong enough to handle all of this stress and worry that is now on my shoulders and on my husbands!!!

One Step Forward, Two Steps Back...

Yesterday we finally conquered the milestone dealing with Rose's health issues and you would think that we would be able to take a breath of fresh air and relax as one major stress can exit our lives...and then I got the call from my OBGYN giving me the news that I tested as a positive carrier for the Down-syndrome and Tri-somy 21 test. This does not mean that the baby I am currently trying to develop has this issue but that I for some reason have a higher chance of having a baby with this. I am trying not to freak out because a lot of times women are told they had a positive test result and everything was ok. Its just that there is a chance for something to be wrong. So, I set up an appointment today for May 19 to go to get some further ultrasounds done and possibly an amniocentesis, depending on what the doctor see's in the ultrasound. Have any of you ever tested positive for this or had experience with this? Should I be freaking out? I don't know. I do know that today was the first day in months that I actually haven't needed an afternoon nap and I made Oatmeal chocolate chip cookies-which is huge because I haven't cooked in months either. I am even considering making sloppy joes for dinner. So, there is my happy thought, today I have a little more energy to be just a little more me.
(I don't mean to sound like I am complaining or "woe is me" but the name of my blog is "Memoirs of Mothers" and right now my personal "Memoir" includes a lot of stressful medical issues...)

Long Road

Early in January this year my little girl was diagnosed with something called "Precocious Puberty" which is basically an early onset of puberty. In her case a very, very early onset sent she wasn't even two yet when we noticed her issues. Her pediatrician was great at helping us along with her diagnosis by referring us to a Pediatric OBGYN, and a Pediatric Endocrinologist. They were very cautious in the beginning because sometimes, very rarely this can occur because of systs on the ovaries or in extreme cases a tumor in the brain. Luckily we were able to rule both of those issues out early in February which was a huge relief to us and to our family/friends. Along with the various blood tests and ultrasound, and MRI we also got to get her hand x-rayed to see what age her bone structure was. Alot of time girls before puberty will hit a growth spurt and then once their periods hit they stop growing. So another issue we were having to deal with was making sure that she was the size that she should be and luckily that test came out normal also...so what caused or is causing my daughter to have "Precocious Puberty?" We don't know...after talking with the doctor we felt like time was on our side and that we could wait until Summer sometime to do the the small surgery where they insert a little capsule under her skin to help control her hormonal imbalance.
Then, in early April my Husband and I woke up on a Sunday morning to my baby's diaper being filled with blood. Aghhhh, it was terrible, and of course it was Sunday. Luckily we knew what was going on and didn't rush her to the hospital, it was just her first little period at age 2. Monday didn't come quick enough and we called her endo doctor first thing and of course it was the week of spring break so he was out of the office for the week, and the doctors that do the surgery were out of their office for the week. So we put her on a progesterone pill to stop the bleeding and we worked with another doctor in the office, who was very kind and great to work with. The whole week were were trying to get our insurance to allow us to start a shot called "Lupron Depot" which is used with this disorder to help control the issue...at least until we could get the surgery done. Of course insurance was a pain in the behind, which they have been throughout this whole experience for the most part. They denied us the drug and it took me calling and crying to them that my 2 year old is having her period, and getting our Endo doctor back to call the insurance and get them to get us the shot. We finally got that all taken care of and were able to go to the Doctors office and have them give it too her (so that we weren't the bad guys). As we were carrying our screaming child out of that office visit I was so much more set on getting the surgery as soon as possible so that we didn't have to go through that every month.
We were able to set the surgery date for May 17 and things were going along fine until 2 weeks after the shot, on a Sunday once again baby girl had blood in her diaper...erk!!!Luckily we had an appointment with the surgeon the next day and we were able to get him involved with the urgency of getting this surgery done and were able to schedule the surgery a week out from then.
And that brings us to today when we woke up at 6 a.m. and drug the little lady out of her crib around 6:30 and went to the hospital for her surgery. At this point she hates doctors, nurses, and hospital beds, so we were aware that it would be a bit rough, but I was not prepared for 3 of us to hold her down trying to get her to hold still while the nurse tried to get the IV needle in her. Of course the first time failed, so we had to do it twice. I thought baby girl was going to go into shock she was screaming and crying so much! Then they wheeled her out of the room screaming still at the top of her lungs, and then we could hear her screaming in the surgery room...all the while she is screaming I am sobbing buckets of tears and my Mom also because up to date I think that is the most traumatic experience we have been through with her. Finally she stops screaming and literally a few minutes later the surgeon is in our room talking with us telling us that everything went well and good. When the nurse rolled our now sleeping baby back into our room I asked her why she was screaming for so long and the nurse told us that she didn't want the blood pressure cuff on her leg. She told us that our little girl is a fighter...which we already knew:) The wonderful thing is that finally, finally, finally the surgery is behind us. Rose has the medicine she needs and we won't have to do this surgery again for 12 more months. I am so grateful for advanced medicine and that they were able to do this to help my baby girl, I just wish it didn't have to be so traumatic for her and for us!
So, you may be wondering what happens next, well for the next 10ish years we will be doing this surgery on every May 3rd, to hold off my little daughter puberty until it is time for it to really start. And that is why this is still a long road for us.