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