Wednesday, August 4, 2010

Heart Update

First off I just want to say thank you for all the comments that I have received. I am so overwhelmed by how many mothers are out there going through the same thing as me and it brings such great comfort. I know that I have people that I can turn to now for so much help and support.
Today we went and visited with the pediatric cardiologist to check out Sienna's heart. They lady took an hour doing the ultrasound and took 150 pictures of her heart. After that the doctor came in and told us that she has an AV Canal Defect which is very common in kids with down syndrome. He said that the success rate of these heart surgery's have been great and Sienna would have a normal delivery and we would come back when she is 6 months for her to have open heart surgery to fix that. After he gave us the good news he then proceeded to the bad news.
As I said in my previous posts that her growth has been decreasing. Well the doctor told us that it isn't because of the heart defect cause that shouldn't cause her to slow down her growth. He said there is something wrong with the placenta and the umbilical chord and our baby isn't getting the nutrients she needs. He said that is a great concern and there isn't much he can tell us about that area because he just works on the heart. He sent out letters to both my doctors and said they should be calling me within the next couple of days.
I have no clue what my doctor is going to tell me or if they are going to put me on bed rest but it is scary cause once we find out one thing is fine it seems like there is something else that is wrong. I am so scared and I hope there is a way that they can get nutrients to her or she could die cause she isn't growing. I feel so numb from all the news right now and I am sure it is going to hit me tomorrow after my doctor calls and I will have another break down. I hate waiting to find things out I just want to know everything now so that I can sleep easy and get through this.
On the positive side my cute little 2 year old has been hilarious today and has really kept our spirits up. I swear an angel told him to lift up his parents through these hard times cause he really knows how to cheer us up when we are sad. I don't know what I would do without him. I know he was sent her to get us through these hard times.
Now I just have to wait and I will update when I found out what the next step is to keep Sienna strong.

16 comments:

Stacy said...

We continue to have you and your little girl in our prayers. I am inspired by how strong you are during this difficult time. So glad you have that sweet little boy to keep you smiling :)

deanie said...

I learned of your Angel Sienna today. As a mother of 5 sons with Ds. I feel so very blessed to learn from them everyday. We have been through 5 heart surgeries; it is frightening at the time. Father is holding her and you. Your sweet boy will also lift his sister. We will keep you all in our prayers.
Blessings,
deanie and the boyz
http://lifeonthe21stchromosome.blogspot.com

Adrienne said...

Praying for your little one. I know this is so hard right now. My little girls kept me smiling through rough times during my pregnancy as well. Hope your doctors can find the right treatment for you and your girl.

Adrienne
http://wwwourunexpectedjourney.blogspot.com

Looking Up said...

Teresa, I am a mom to an adorable 20 month old who has DS & had open heart surgery last year for a complete AV Canal Defect as well. Learning about my son's diagnosis during my pregnancy & then getting through his surgery when he was only 3 months old....Well, those were some of the most stressful times in my life. Through much prayer & support we all made it through, & I'm so happy to tell you that my son is doing so great today!!! He is so bright & energetic, you would never know that he had open heart surgery! I know that you have some concerns about your baby's growth as well. Praying that everything is well & that your fears will be calmed soon. Know that you now have an extended "special" family here to offer up prayers & support. Take care, Kim

Stephanie @ Ralphcrew said...

I didn't find out about my son's DS until after he was born. He was so sick that the DS was the least of our worries. I pray that your docs can help you with Sienna's growth and that you can be at ease. What a lovely bunch of supportive commenters you have here! A real blessing.

Rochelle said...

We didn't find out that Alayna has ds until she was born. But, I too had placental issues (they finally ruled out the umbilical cord) and she was born on time at 4 pounds 14 oz. She was perfectly healthy and is a whopping 21 pounds now at 21 months. I was put on bedrest for the last month of pg.
Praying for your peace, it is going to be alright.
I love how your son is helping you guys get through this. The DS blogging community is a wonderful family.

Rochelle
http://lifeandtimesofalayna.blogspot.com/

abecky529 said...

Thank you for your update. I will pray for you and your baby at this time. I am so thankful that you love Sienna so much that you will do all you can to help her. I can't help but think of the parents who don't want their child when they find out he/she is not "perfect". Take one day at a time. Becky

Jenny said...

Praying for you and little Sienna.

Owen and Krae said...

First, I have to say you have a LOT of people praying for you and Sienna! It's great to know that so many people care about you!:)

and second, that's great news about the heart! You can (somewhat) cross that off the "worry list". One overwelming step at a time. We love you and keep us updated!

Holly Wolly said...

Brooke had the complete av canal too, so I know how scary it is, but she had surgery in May when she was just over 4 mths old and is now doing great, you would honestly never know (except for her scar). The babies really do bounce back super quickly!
Your fam is in our thoughts and I hope the drs figure out how to get little Sienna the nutrients she needs so she can grow!
There are pics of Brooke on my blog from after surgery if you want to see, they are kind of intense, just a warning...
Holly

Angela said...

Thank you for writing this blog. It's so helpful to know what the doctors are saying, but more importantly it's so helpful to know what YOU--our beloved sister--is going through! One correction though, Sienna is going to be ADORED by her cousins! Sienna is coming to this earth with two best friends built right in! She automatically will have two girlfriends who will NEVER make fun of or be afraid of her! In fact, I bet they all know each other right now! Sienna will always have these two cousins who will always be her pal. They're hanging out/hugging/playing/laughing as we speak!

j*e*n said...

My prayers will be with you & Sienna as the doctors figure out how to keep both of you safe & healthy. Our daugher Ainsley also had a complete AV Canal defect that was repaired a 3 months.The scar is the only indication that there was ever anything amiss. She is 3 and getting ready to start Pre-K in 2 weeks. Lots of prayers for you from central IL. :)

Poot and Boogie said...

I found your blog tonight, and although I don't know what it is like to go through the heart part of DS I do know what it is like to have a baby with DS. My daughter is 16 weeks old, and was born to our surprise with Ds. It is a hard struggle, but there is light at the end of the tunnel. It is hard to imagine what your daughter will be like now, but when she lands in your arms everything falls into place. There is so much help and so many wonderful parents to help guide you on your journey, just be comforted by knowing that even when you feel like you are absolutely alone, there are so many of us here for you.
Take care, I will be thinking of you
Leanna
www.pootandboogie.blogspot.com

Lisa S. said...

We are praying for you. We have two sons with Ds and one little girl in Heaven that has Ds. We are in the process of adopting a angel from Eastern Europe with Ds. We also have two typical children and one who is Autistic. Feel free to email me at lsmith69@columbus.rr.com We can swap stories and I can lend some support!! Our blog is www.savinganangel.blogspot.com

Michelle and Justin Cavender said...

Teresa, you are such a strong woman and you amaze me everytime I read your posts. I can't even BEGIN to imagine what this situation is even like. One thing, I have had placenta problems since 6 months and have been monitored closely as well for Peytyn's growth, but every appointment, she surprises us all and grows just a little bit more to hang in there to stay above the 10th percentile. The placenta is just one of those mysteries that we really can't control. I have been on bed rest since then and it is probably the best way to go. I know Sienna will make it through! I love you so much and I will be praying for you both!

Kellan's momma said...

I followed a link from dsnewmama to here. I have a 10 month old boy with Ds, and love him to pieces. He is fairly delayed, it's hard to be around friends' babies 3 and 4 months younger that are so much further developmentally, but that's mostly physical. Kellan does very well in other areas, like socially. Everyone loves him because he loves everyone back!! He is our little piece of heaven. He is the youngest of 4, the oldest being 17, and the most important person in our family. I know that he will continue to progress and meet each milestone in his own time. We just try to take one day at a time, which is very difficult. I recently blogged about my test of patience this past 10 months!! I will keep you and Sienna and your family in my thoughts and prayers and am eager to follow your journey!! Take care!
Christina