Sunday Scripture

I can honestly say that I am not always a "joyful mother of children," But I try to be. The definition of Barren really helps me relate to this more:

"He maketh the barren woman to keep house,
and to be a joyful mother of children.
Praise ye the Lord."
Prov. 113:9

Consider these definitions for BARREN; deficient, depleted, bleak, drained, empty, exhausted, harsh, hopeless, impoverished, ineffectual, lacking, lonely, simple, unproductive, vain, without, wanting.

Down Syndrome Story from the Ensign

So many people have been telling me about this Ensign Article from this months edition. It is titled "Though Hard to You." It was very sweet, and is interesting to me to find that many of the emotions I have felt and sometimes still feel, the author has felt also. Here is the link if you want to read it: http://lds.org/ensign/2011/08/though-hard-to-you?lang=eng

Onsie Embelishment-Too Cute!!!

Today's Project: Onesie Embellishment
(I know the pic isn't the greatest, but you still get the idea i'm sure. Of course it is even cuter in person:)
I originally got this idea while I was perusing my way through pinterest, and of course had to pin this one to my account. Here is the address with the pictures that inspired me:
http://icandyhandmade.blogspot.com/2011/04/tutorial-onesie-fun.html#more

Of course she didn't have the bow making directions so I had to find another blog with them and found this on:
http://www.prudentbaby.com/2010/04/how-to-make-bow-tie.html
The instructions are for a boy's bow tie, but I used girl material and just did the bow. Then I hand stitched it to the onesie. I am so excited to try the flower embellishment, but need to borrow my Mom's Surger to make it easier...So, if you are looking for a cute baby shower gift or just want a craft to do this one is super fun and super easy.
Happy Sewing:)

Lessons from my 2 year old

1-You don't need music to dance. Just make your own and have a party...it's so fun.
2-Sing the "Happy Day" song everyday of your life. (If you don't know the "Happy Day" song that's ok, just make it up, that's what Rose has done)
3-Always be quick to forgive and forget and move on with your life.
4-Its OK to stop in the middle of the day and take a nap...it will make you happier as the night goes on.
5-It doesn't matter what you are wearing as long as you feel beautiful in it, it doesn't matter what the World thinks.
6-Its always nice when Daddy comes home:)

My Hard Road

I walked a mile with Pleasure.
She chattered all the way,
But left me none the wiser
For all she had to say.
I walked a mile with Sorrow,
And ne’er a word said she;
But oh, the things I learned from her
When Sorrow walked with me!
Robert Browning Hamilton, “Along the Road”

To say that this year has been joyous, exciting and filled with fun experiences for me would be totally inaccurate to how I truly feel. Since I hope that perhaps someday someone who is experiencing what I am currently experiencing will read this post, I will just tell the truth, its hard, really hard emotionally and physically right.
Let me back up to our new year celebration bringing in 2011 the people I love! I was soooooo excited for this year! We had so many fun trips planned, including going to "Harry Potter World" with my Mom and Sister, visiting Russia and Estonia with my husband, going to Florida with the in-laws, hopefully getting pregnant and having a healthy baby sometime around the holiday's...I had the year planned out and it was going to be great. And then life happened. My Daughter was diagnosed with precocious puberty and was seeing multiple doctors quite frequently, later she was diagnosed with a tumor that had to be taken out in late May. I got pregnant and had terrible morning sickness for months, the trips I had wanted to go on didn't happen, My husband still hates his job and it seems that no matter how much applying for new employment always gets denied. Then my pregnancy gets put into the "High Risk" category because the baby is diagnosed with Down syndrome and an unknown heart condition. I have months now to worry about the delivery, the NICU and how to balance my life between being a Wife and Mother, and not just living in the hospital until my new baby is released.
It seems heavier and heavier on my soul to be carrying this DS baby and I honestly don't know why I am pregnant, or wish I could go back and undue what was done and just have an only child. Somehow I suppose that would make everything better. My daughter see's me crying as I still am throwing up over the toilet or just break down in tears when I am driving or talking with someone. She is so sweet and asks in the cutest, littlest voice "Ok mommy? Ok?" And I just give her a hug and a kiss and say I'm ok because I'm not sure if these emotions are because I am pregnant and my hormones are out of control or if life really truly is just so hard to carry right now.
I guess I couldn't just expect a life in the lap of luxury, as much as I wanted it to be that way, and for some reason this year was determined to be the year that truly knocks off a few of my hard edges and makes me a bit more compassionate, soft and understanding to others with the trials they go through. I have come to the realization that the Lord truly knew where to hit my heart the most. He knew that if I was sick, I wouldn't grow as much, so he gave medical issues to my daughters, and knew that this would be the hardest thing for me to handle right now.
So what keeps me going, why do I wake up in the morning and trudge through another day. I guess I know that someday the stresses that I currently carry will lighten and this will just become life for me. I know that trials come to all, and I have been hand picked for these ones. Most importantly I trust in God, and put my Faith in his plan. I read the scriptures and conference talks like crazy right now because I find peace when I turn to Him.
"Come unto me all ye that labor and are heavy laden and I will give rest unto your soul. For my yoke is easy and my burden is light." Mathew
So, yes my road is hard and heavy to carry right, but I am trying, trying so hard to remember the blessings of this year outweigh the sorrows and heartache. For example, we are having another baby girl in a few months, My husband went to Russia, My Daughter doesn't have cancer...

Geneticists Appointment

Today Brian and I went to meet our local Geneticists. (I didn't even know they existed until I needed one) We were just wondering what our future holds as far as having more children with Down syndrome. We found out that our baby has the most common cause of down syndrome which the geneticists explained as a "Fluke with the DNA." At least something is common or normal about our baby. It was an intriguing meeting and I actually felt like that job could be a fun job, if you really like science and dissecting DNA...
Rosie has started to pray for the baby in Mommy's belly. It is so cute! I think she is going to be a very proud big sister!

Doctors, Doctors, and more Doctors...

Our last two Doctor appointments we have been able to get 4D pics of our baby girl. It has been so great to be able to see her and feel a connection with her. It was also very helpful for me to see that she is a beautiful baby, just like her big sister Rose, and we are soooooo very excited to welcome her into our lives!!!
Here is a letter we wrote to our family to update them on my pregnancy. I thought I would share it with you all:)
Hey Family,
Brian and I had what seemed like a million doctor appointments this past week and wanted you to be updated on whats going on. So, our baby girl is doing exceptionally well while I am pregnant with her. The heart Surgeon we met this week said that she is in the best incubator right now. Its better than any medical intervention could do. Brian and I believe that is because she is in a God made incubator, which He never makes mistakes:) That is why I need you all to pray that I will just be pregnant for the rest of my life...ok so that's not going to happen but I kind of wish it could. Our OB visit went well this week. So, if you didn't know whats going on, she has been diagnosed with Down syndrome and possibly 1 of 4 undetermined heart issues, which one of them will eventually be the correct diagnosis, it just might take until she is born and they can actually do the ultra sound on her instead of through me to be sure. Nothing new at our OB visit was found(for once) for us to stress about. We love our new High Risk OB. He is very kind and has a special needs child himself, so we feel like we have something in common with him. He also takes a special interest in fetal hearts and therefore is an absolutely perfect fit for us and our needs.

After the OB visit we went to the hospital, Norton Suburban where she will be born and met with one of the Neonatal doctors there. There are quit a few of them. She was absolutely amazing and I truly feel that our baby girl will be in good hands. We were able to speak with her for about an hour and a half and she pretty much just let us know for the most part how everything should go, so that we can prepare ourselves. She said that the delivery room is going to be packed full of nurses and doctors for both me and the baby, during delivery. She said that as long as if she is doing ok we will get to hold her for about 20ish minutes before they whisk her away to the NICU to do a ton of testing. After that 20 min. there is a really good possibility that we won't be able to hold her again for a few days, possibly til after her heart surgery. This is because of all of the wires that will be attatched through her umbilical cord. I guess they fall out pretty easily...So, She suggested that anyone who we wanted to see her need to be outside the door so that they can enter the room as soon as possible after her birth. We will need someone to be at the hospital with Rose because it is sooooo important to Brian and I that she can see her sister at that moment, because she won't get another opportunity to hold her or see her until she is out of the NICU which could be anywhere from 10 days to 2 months. I am not sure what everyone's plans are in October, but there is a REALLY good chance that this will be the birth month, any time that month and we would love to have our immediate family members there to be able to see her before she is taken away. We would like it to just be the adult members of the family and Rose for this visit. The doctors want me to carry the baby as long as possible but if she tries to come from 36 weeks on they won't try to stop it. So, that is why we are saying anytime in October. Quite a few DS babies come a month early, but of course we are still rooting for the 11/1/11 birth date. The next morning after she is born the dr. said that they have a meeting and talk about the baby and whats going on and how they are going to approach the issues. She highly recommends that Brian is there, and me if at all possible, so that we can know all that is going on. The initial diagnosis with baby's heart -Hypo-plastic Left Heart Syndrome, is one that we really, really don't want her to have. Luckily the doctors seem to think it will not be this, but we won't know for sure until then. This diagnosis requires 3 open heart surgeries and the first surgery has a %70 success rate with kids who don't have any other issues. The Neonatal doctor said that the success rate is cut in half with babies with a disability, so that puts us at not the greatest of odds. The other 3 heart diagnosis that we have been given are not as risky. 2 of the 3 would require immediate surgery.

After that visit she took us over to Kosair to the NICU where our baby will be and let us have a little tour. There are so many sweet babies there with so many wires and machines hooked up to them. It was hard to imagine that our little baby will be in the same place. But once again we have really liked all of the Doctors we have met and feel like we are in good hands. We met with our Pediatric Heart Surgeon on Friday and wish that we had a specific diagnosis instead of 4 to talk about. But he seemed very knowledgeable and capable of what he will need to do.

That's pretty much it for right now. This has been a very emotional thing for us to deal with and we so appreciate all of your prayers for us! We truly have been strengthened. Brian and I are very excited to get to be involved with the DS group here in town! We are so excited for our little baby girl to join our family. We believe that the first year will probably be pretty rough on us all, but we will make it through. Our social network will definitely be growing and we are looking forward to all the new friends we will be making in our future.

We Love you!!!

Amber, Brian and Rose

Potty Training, Day 6

Yes, I know I have skipped day's 2-5 but I just haven't had the chance to do a post til know. I'm sure you understand! So the greatest news ever is that ROSE IS POTTY TRAINED!!! Yay! On Tuesday she had a few accidents and wouldn't tell me that she needed to go potty, probably because she was still learning what it felt like. Then her Daddy came home from work and would do toilet time with her, and when she went to the bathroom he would do a potty dance and both of them would dance through the house...very cute. Rose loves to dance and I think he flipped the switch. Wednesday was crazy for me I had a bunch of people in and out of the house all day so Rosie was in her diaper most of the day, or course I did put her in panties at one point and she pooped in them so I put her right straight back in a diaper. Then, on Thursday Friday and so far Saturday she hasn't had any accidents in her panties! Woohoo! She actually will say "Potty Mommy" and we run to the bathroom. She even did this at Wal Mart yesterday when she had a diaper on, and today when we were in the car going to Kohls. I'm so proud of my little button!
Of course there is still training to do. I am not 100% confident that she will tell me she needs to potty when we are going to the store or if we have people over, so next week we will work on being in panites more often and a few less diapers. And she has not figured out how to poop in the potty yet. Its kind of my fault because I haven't stayed home all week and when it hits her is usually when we are out somewhere, so next week we will also be working on the pooping. I am still very happy with how far we have come. It seems like she will be potty trained by the time baby #2 comes around! Woohoo, we will only have 1 kiddo in diapers!
p.s. The snack and penny for the piggy bank tricks really worked well, and a sticker for trying. I think it made it a positive thing to include these things, and of course the celebration potty dance did wonders too.

Potty Training, Attempt #2: Day 1

I woke up this morning with the crazy desire to attempt to potty train my 2 1/2 year old. This is the second attempt. I tried a few weeks ago, for about 1 1/2 days and then called it quits. This has to be up there on my list of "Things I don't want to deal with as a Mother but eventually the day will come when I can no longer avoid the issue."
For success this time around my goals are:
#1-I will not give up...diapers are a thing of the past!
#2-Positive reinforcement:
-Cheering when she actually uses the potty. Stickers when she tries, a M&M if she pee's and
also a penny to put in her piggy bank to use later on the Penny Pony Ride at Meijer (thank-you
Meijer for having a cheep fun ride!) If she poop's then she gets double the reward.
#3-She gets to wear Minnie Mouse panties that she picked out from Wal-Marts great pantie
selection.
#4-We are borrowing Sesame Streets Potty Movie with Elmo. I'm hoping it will inspire her.
#5-We are using a timer and every 10 min. she sits on the potty.
#6-Never let her sippy cup run dry. Juice, Juice Juice. Keep the girl very well hydrated so we will have success on the toilet.

Today's Potty Training Milestones:
1-She went potty twice in the toilet. Hooray!
2-She then went potty twice in her panties. One happened while I was making lunch, it was slightly my fault for not paying full attention. Of course after that accident I put her in a diaper so that I could get lunch made without any more interruptions.
3-Diaper malfunction-yes, I put her IN a diaper but did it work?... No, it did not. 5 minutes after cleaning up her previous potty mess she runs to me saying "Potty" and sure enough she had pottied even more than the first one, and her diaper for some reason just let it all seep out on the floor again. What did I do? I had to laugh, it was that or pull all of my hair out and scream "I Quit."

Good Advice I received:
-If you truly need a break or if you are going out somewhere and just don't want to deal with an accident, putting on a diaper is OK. When you get your cool back and are ready to take on the potty training task again then put the panties back on and get back to it.

Why Potty Training is Driving me Bonkers:
-I like to think of myself and my home as a clean, germ free place. And the very, very, very most frustrating thing is that there is pee suddenly on all of my clean places, which means time and energy that I have to muster up from somewhere to get it all cleaned again. Rose's surgeon told me that urine is clean and even though I don't fully agree with that I have to keep reminding myself about that comment as I run Rose to the bathroom, Both of us covered in her Urine ...Erk, I hate potty training :) I have to sing the Elmo potty song "Accidents Happen" just to make it through the moment.

"I will not give up, I will not give up, I will not give up..." I would love any advice of course because I obviously have no idea what a can of worms I am opening up with my potty training goal!

Good Things

I have been so blessed this week! Rose has discovered that she is truly a princess and actually asked to wear her Princess hat. She has also discovered a little comb and brush I have by her doll set. She thinks that it is to brush my hair out with, which actually is pretty nice! She does a great job at it and I think she has a future as a Cosmetologist...maybe at least as a side job while she is going through college...:)
My Husband spent a long couple of hour's last night installing a newish toilet (we inherited my parents old one, which is still much, much nicer than the one we currently had). So now we don't have to turn the water off and on to the toilet every time we use it. I had almost forgot what a blessing a working toilet and indoor plumbing is!
We met with our Pediatric Cardiologist this week and he did a fetal echo on our baby girl. I guess he found good things even though the left side of her heart is smaller than the right, the valves that go into and out of her heart are working and so he said it may be too early to correctly diagnose her issue as being Hypo-plastic left heart syndrome. There is a good chance she will still need heart surgery right after birth but it will only be one instead of three....
Then I went to meet my new High Risk Doctor, whom I also liked and he unfortunately (or fortunately) came across a hole in baby girls heart, which is common for Down syndrome children to have. So now we have 2 heart issues that we will be dealing with. At this point I just expect to hear more bad news at any doctors visit and it isn't such a shock to deal with.
This Doctor has been great though. His secretary has already set us up with an appointment to go through a tour of the NICU and to meet the Neo-natologist that will be working with our daughter. We also will be meeting the Pediatric Heart Surgeons a few days after that. I am so grateful that we will be able to meet with these people before hand and now and hopefully trust everyone that will be working with our little Angel.
One more good thing about having all of these High Risk issues is that I have multiple doctors cell phone numbers, who have told me to call any time. I can honestly say that this is a first for me. I have never had so many doctors private cell phone numbers. Luckily I haven't had to use them, and hopefully won't have to use them, but its nice to have on hand.

The Hardest Request

"Mom, would you be willing to crochet my baby a blessing dress? I need it done by the time she's born, just in case something goes wrong I want to be able to bury her in it..." Tears...
Never thought I would ever have this conversation with my Mom, not while both of us were alive at least.

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.

Priorities

My poor, exhausted husband has taken on a lot the last few months between working full time, school part time, taking care of Rose and I, and renovating our new house. Needless to say the house has been put on a bit more of a back burner unfortunately. What have I learned from this experience? If life is good, and you are functioning day to day just take on one thing at a time. For example: wait to move until your husband finishes his MBA program. Or wait to move until after the baby comes. Wait to move until...well I'm sure you get the point, just don't move ever, ever, ever, unless it is the only thing on your plate. My new life motto is "Simplify." I hope you all are better at it then I am!!!

9 Weeks and Counting

I'll just get straight to the point- I am 9 weeks and 1 day pregnant. I have been debating on using this blog as a journal for my pregnancy, and finally decided that it will just have to do, since we are in-between homes right now and I can't find my journal.
So far I believe the little thing is growing well. How do I know this? I am exhausted, sick, and would love to just lay in bed all day and have my husband and 2 year old daughter wait on me...but since my hubby works and my kiddo causes ultimate chaos and disasters if left alone for 2 min. I have to force myself out of bed each morning, figure out what to eat for breakfast, take my medicine, that doesn't really work so great right now anyways, and then try to convince myself the rest of the day to just keep myself together.
I was talking with my Sister earlier today and I informed her that this is the last pregnancy I am going to go through. She reminded me that sometimes it is best to not make a big decision like that when you are in the middle of it...which is very good wisdom on her part. But as of today this will be my last pregnancy :)
So, that is my life right now. The wonderful thing is that I bought me some Dr. Teals Epsom Bath Salts from Wal Mart and took a bath tonight and it was wonderful! I really need to get a soaking tub!!!

out-of network or in-network?

My baby girl was diagnosed with a hormone imbalance early last January which ended up in a flurry of Dr. appointments and multiple hospital visits for blood tests and x-rays, and to add to the already extremely stressful times of our lives our insurance a few months earlier had dropped basically all of the doctors that we needed to get into see...so, after many hours of loosing sleep over whether or not insurance will help with the Doctor bills or if we get to spend the rest of our lives paying for them we found out today that they will count the Doctors as if they were in-network. BLESSINGS!!! Ok, so huge, huge amounts of pressure and stress were lifted off of my shoulders by hearing those two little words!!! Thank heaven for good people in Insurance who answered our plea for financial help on this matter! Have you ever had to deal with your insurance company for networking issues? I hope that it all worked itself out!

I'm Back...

After listening to my Husband and sister in-law complain last night about how I haven't written on here forever and that they aren't sure if I have overcome my Insomnia issues yet I thought it was time to get back to the blogging. :) So Michelle and Brian this post is dedicated to you! (I think insomnia is something I will deal with off and on for the rest of my life unfortunately)
So, what has been going on in my life the last few months...Halloween, putting our house up for Sale, Thanksgiving, Christmas, New Years, surviving yet another cold depressing January, selling our home, and putting an offer on another cute home a few blocks away.
Today we are celebrating Valentines Day. Happy Valentines Day everyone. I hope you are feeling loved!!! We are celebrating today by signing our life away on a future home mortgage...we did get excited when we found out that our credit score is excellent! YAY! And we don't have to start paying on a mortgage again until May...another wonderful thing to celebrate!
You would think after having my house for sell for 4 months I would be over joyed and excited to pull out the boxes and fill them up with our stuff for our move out day in early March...but the energy and excitement is non-existent. Its such a lonely thing, and actually kind of sad. Even though we have only lived here for 2 1/2 years this has been our home and holds many memories. Sweetest of all of course is that this is where we brought our baby girl home too from the hospital...and have watched all of her sweet little milestones over the last 2 years. I guess there will always be new memories to be made no matter where we live...but I am needing some suggestions on how to gear up for packing. I'm am considering throwing a "Packing Party" where I provide, pizza, pop, boxes and closets and rooms full of stuff to fill the boxes up with. I'm just not sure how many friends would be excited about this kind of party...what do you think?

p.s. the above home is the home we put an offer in on...yes the shrubbery is totally out of control, but get rid of that and it has adorable country charm and is about double the size of our current home...and it actually has a decent sized back yard for us to have all sorts of fun in. YAY!