DownSyn Forum

kim0316 · Last edited by kim0316 on June 24 2011, 7:35 PM; edited 2 times in total

Hi,
I just want to say I'm happy I found this site and hope to get to know many of you. I also hope that there may be others who have experienced what we have might be willing to share their own experiences and info they have learned. My husband (47) and I (43) found out by surprise we were expecting last fall after 4 1/2 years of trying to concieve, 3 miscarriages, failed fertility treatments ( meds, IUIs) and 22 months applying, completing homestudy and being approved to adopt through social services. My due date was May 17th, 3 weeks ago. Due to my age and history of miscarriage I had the NT scan, early US. It showed a measurement of 4mm. We were given a risk of 1 in 5 for Down syndrome. I knew I was at risk but still felt shocked and upset at the thought. We were offered amnio but refused as we didn't want to risk even the slightest chance of m/c. After a few weeks I found myself more relaxed and accepting of it as my husband took a positive, things will all be OK in the end attitude. On Jan 7th, at 21 weeks, we went for our anatomy scan. We learned we were expecting a baby girl who had an AVSD and echogenic spot on her bowel. Our focus went from worrying about Ds to worrying about her heart. The risk was changed to 1:3 with these 2 markers. Everything else looked great. Again we were offered an amnio which we refused. A referral was made to have a fetal echocardiogram and meet with a pediatric cardiologist. Our appt was for Feb 11th. On Feb 6th my husband and I were in a motor vehicle accident. We were hit head on by a drunk driver. My worries went from Ds and heart health to the possibility of losing her right then. I was just 25w5d at that point. I had a fractured foot that required surgery that day and had general anesthetic. My husband had injuries as well including a fractured wrist, soft tissue damage to back & neck and a cut up leg. We were in hospital for 5 days (me) and 6 days (him). When I was discharged I travelled the 4 hours to get to the appt for the echo and cardiologist that day. My husband was still in hospital. The heart defect was confirmed and I learned she would definitely need surgery for repair. I returned home and my mother came to help. My husband was unable to come home on discharge as our 1 bathroom and 3 bedrooms were all upstairs which he was unable to physically do with all of his injuries. He stayed at his aunts place for the next several weeks. On March 6th, I had sudden severe abdominal pain and my water broke. I was admitted and transferred back to the hospital which is 4 hours away. I was placed on bedrest and had ultrasounds almost daily. At first there was lots of fluid around her but then she turned to a breech position and more fluid was lost quicker. Blood flow to her was also very slow. I still managed to hang on for 10 days though as they gave her every day they could. On March 16th, at 31w1d, Jillian was born by emergency c-section for fetal distress. She weighed 2lbs13oz and was 16 inches long. The docs felt that she had Ds by looking at her and it was confirmed with karyotype results 2 weeks later. Within a couple days of her birth we learned she had Transient Leukemia. I had never heard of it. It was a scarey name. We learned that it was benign but puts her at higher risk for getting a malignant leukemia in the future. We were told if it didn't resolve like expected in 2-3 months she would need chemo. At this point we were so concerned with her health, being preterm, a heart defect requiring surgery and transient leukemia, Ds seemed like such a small concern. At 3 weeks old she was transferred back to hospital closer to our home. She was there 4 weeks and had been doing well. She had gained 2lbs over her birth weight, was off oxygen and out of an incubator into a bassinet. We were thinking home in a couple weeks. Then her bloodwork showed her liver enzymes were getting higher and higher, her liver enlarged. She began having more drops of her oxygen level requiring oxygen. They thought this could be congestive heart failure due to her heart defect or not. She was started on diuretics and a heart med. The next day she was transferred back to the hospital 4hrs away. She's been there over 4 weeks now. In that time her liver enzymes came down but then she developed blood in her stool and pneumatosis, suggesting necrotizing enterocolitis of the bowel. She immediately was taken off feeds and could have no milk or anything in her belly to let her bowel rest and started on IV antibotics for 10 days. When the 10 days was up she was very gradually started back on feeds. Her platelets had dropped with the infection too and she had to be transfused 3 times as well as a blood transfusion. Today she's 82 days old. She's 5lbs9oz, at full feeds which are given by NG tube ( hoping to breastfeed someday as she did latch well a few times previously), has reflux though, is on a small amount of oxygen and is stable. Today they're trying to arrange transfer back to home hospital again with the plan to set up home O2 so she can come home until her heart surgery which is being planned for August. Thanks for reading if you got this far. Sorry so long. We're thrilled with our baby girl and so in love with her. I'm so proud of how she has tolerated all of the poking and everything she's been through. I know I would be so cranky beginning weeks ago if it were me. I hope to be able to get her started with therapy asap. We still have a long road ahead of us as we still have her heart surgery to go through. Thanks again for reading.

Update - Jillian came home for good on Monday, June 20th at 96 days old. She's 6lbs 90z now. Her heart surgery date hasn't been scheduled yet but we have been told sometime in August.
[img]

[/img]

_________________
Jillian Ruth March 16th - July 30th, 2011. Down syndrome, AVSD and transient leukemia.

seansmom · Posted: June 06 2011, 12:27 PM Post subject:

Wow! First congrats on your baby girl. Second, I just want to give you a huge hug. You've been through so much already. After this crazy start everything else is going to be a piece of cake I think.

Welcome to Down Syn. You will find lots of support and information here. There are a great bunch of people on this forum. Feel free to ask any questions you want no matter how big or small.

I'm sure Jillian will thrive with all the love you are pouring on her. It sounds like you are very loving parents. Enjoy the baby stage. It is so special. Our kids are babies longer but they do grow up, really they do! Lol

Good luck on yours and your husband's continued recovery. I hope you are getting lots of support. Contact the Canadian Down Syndrome Society at www.cdss.ca if you haven't already and they will send you out an information package to get you started. I noticed you are in Canada. I'm in Edmonton.

Take care and hope to see you on the forum.

Kellie

_________________

Kellie Mom to Sean 10 yrs with DS and Carly 14 yrs

Momof6 · Posted: June 06 2011, 12:38 PM Post subject:

Welcome to DownSyn.So glad you found us and will be joining. Congrats on your beautiful little fighter. You have all gone through so much. Many thoughts and prayers will be with you that she's home soon. Please keep us updated every chance you get. Huge hugs.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 19, Chelsea 16, Connor 14, Logan 9, Cody 6 & Austin 4 ( DS & Hirschsprungs pull through 12/8/08 ) diagnosis 10/28/10 Colonic Neuropathy, 12/16/11 dx with seizure disorder, neurogentic bladder...Monti Cath 11/9/12
http://www.caringbridge.org/visit/austinpaquin

I think I can, I think I can.
Climb the highest hills in all the land.
(If you think you can, you can.)
He could and he did !

I say CHEESE !

LinMac · Posted: June 06 2011, 1:03 PM Post subject:

Welcome Kim and Jillian!

What an amazing birth story! Its lovely to meet you!

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)

First Communion Day

Dylans_Mom · Posted: June 06 2011, 1:32 PM Post subject:

congrats on your baby girl, and welcome to the board.

_________________
Sandy (Dylans_Mom)
Mom to Hailey 3/2002, Dylan (ds) 12/2005

Gracies mom · Posted: June 06 2011, 4:19 PM Post subject:

Congratulations on the arrival of your beautiful baby girl, she will bring you great joy and happiness. She will be in our prayers x

_________________
Cheryl mom to Hannah 10/11/94, Grace 30/11/10 ds, Stepmom to Ethen 30/06/00 and wife to John married Aug 06

Excalibur · Posted: June 06 2011, 5:28 PM Post subject:

Amazing story of triumph over adversity .. from here on in, the only way is up! Another star is born, and we are all with you every inch of the way. I have been sharing with other parents online now since 1994 when my son was born, on this and a couple of other lists, and this really is an amazing extended international family, through good times and bad.

Tonight my son opened an account with YouTube and uploaded his first video. Stuff like this just creeps up on you, and then you realise in shock and awe that your kids with DS are doing amazing stuff at 16 that we hadnt even learned to do by the age of 40 ... like my son can ski at 16 and I was in my mid-thirties before I could ski.

_________________
There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable.
There is another theory which states that this has already happened.

Tigger · Posted: June 06 2011, 7:17 PM Post subject:

Hi , Welcome and Congratulations!! Wow, you have all had a tough run but it sounds like your little person is a fighter. I was amazed at how resilient Talitha was too as she was born with a serious heart defect and was in heart failure soon after birth and fed by NG tube.

I also had Talitha when I was 43 after 3 miscarriages and refused amnio because of that Very Happy

It is a steep learning curve and hard times but once they are through these first months of surgery etc things start to pick up. For us the first 12 months seemed like constant hospital visits, surgery, admissions for various things but then everything started to settle and she has never looked back.

Hope you are both recovered from your car accident injuries and that you are able to bring your precious bundle home from hospital soon.

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

Edensmama · Posted: June 06 2011, 11:38 PM Post subject:

Hello and Welcome! I'm glad you found us and I look forward to getting to know your family better! Smile

_________________
Nathalie
Mom to Eden (DS) 4-13-08
Wife to Luciano (the best daddy in the world) since 10-8-2005
www.caringbridge.org/visit/edensalem

TheBradyBunch · Posted: June 06 2011, 11:47 PM Post subject:

Hello and welcome!

What a ride you have been on so far! Your daughter has proven to be a little fighter Smile

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

Kasey · Posted: June 07 2011, 12:11 AM Post subject:

Welcome! What an amazing and scary start! Keep us posted, she sounds like a strong little girl!

_________________
Kasey, mom to Paige (4), Leigha (0!)

kim0316 · Posted: June 07 2011, 7:22 AM Post subject:

Thanks so much for the warm welcome everyone! She's being transferred back to home hospital tomorrow! Very Happy

_________________
Jillian Ruth March 16th - July 30th, 2011. Down syndrome, AVSD and transient leukemia.

JanetG · Posted: June 07 2011, 8:15 AM Post subject:

Hello and WELCOME! You have quite the story to tell!! I'm glad your daughter is doing well, and hope you and your husband continue to recover from your injuries.

I don't have any experience with heart issues or leukemia, but there are tons of people on here with experience who can reassure you. Again, welcome, and please post a picture of your little angel!

_________________
Janet (47)
Joshua (angel) '85 (1 day old)
Sarah-age 25
Jaret-age 8
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

Annieo · Posted: June 07 2011, 8:36 AM Post subject:

Welcome to downsyn! Congratulations on the birth of your baby girl. I love the name Jillian Ruth--so pretty. It sounds like you've been through a lot with her already. I hope things start to calm down so you can get your sweet little girl home soon.

_________________

Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul, and Alice
www.caringbridge.org/visit/johnbremer

Momtoseven · Posted: June 07 2011, 1:53 PM Post subject:

Hi and welcome to downsyn. Wow - what an amazing story! Poor Jillian has been through so much in her short life. I really hate that side of ds - all the health problems. Our little boy was no exception - spending 105 days in the hospital. He also had the OHS. It was scary, but I was so glad that it was fixable! Jillian sounds like a fighter! We are praying for her and for you and your husband that you will have your precious little girl home very soon! Please keep us posted.

_________________
Maureen - Mom to Daniel(24), Brandon(22), Jordan(16), Thomas(14), Carrie(10), Samuel(7) and Mark (4)
https://www.carepages.com/carepages/MarkEdwardC32708

Emdad · Posted: June 07 2011, 2:24 PM Post subject:

Welcome!
And, WOW! is right.

kim0316 · Posted: June 07 2011, 3:24 PM Post subject:

Thanks again! I added a pic to my original post. Now I have to figure out how to add it to my signature.

_________________
Jillian Ruth March 16th - July 30th, 2011. Down syndrome, AVSD and transient leukemia.

AliMama · Posted: June 07 2011, 10:09 PM Post subject:

Welcome to Downsyn! It's great to have you here. There are so many experienced parents on here, and hopefully you will find it as great a family as I have. Your little girl is beautiful, and I just love her name Smile

(To add the picture to your signature, just copy and paste the picture's link into the signature box on your profile page.)

_________________
Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-2009

mleonard · Posted: June 10 2011, 7:15 PM Post subject:

Congratulations on your beautiful baby girl!

mom2nicole · Posted: June 10 2011, 8:06 PM Post subject:

I just have to say that your daughter is beautiful! Congrats and she will bring you more joy then you have ever known!! She is such a fighter and yes, the DS goes to the back burner when there is so much more out there to fight. God bless!

_________________
Michelle
My Angel Nicole (9-12-2000)DS
Faith (2-18-2010)bilateral mild hearing loss

jtkkmom · Posted: June 11 2011, 4:10 PM Post subject:

Wow, it sounds like you've all been through a lot! Congrats on your new baby girl. How wonderful that she gets to transfer back closer to home.

_________________
Laura - proud mom to my 4 girls

http://downsyndromeupupupandaway.blogspot.com/

http://community.babycenter.com/groups/a6729133/unlimited_potential

Twilson9608 · Posted: June 12 2011, 2:21 PM Post subject:

Congratulations on your beautiful daughter Jillian. I am so sorry that you have gone through so much already. I understand that this time is probably extremely overwhelming but it will get better and she will show you a world that is far more amazing than it once was prior to her birth-I promise you that!

Our daughter Vada had stomach issues and heart issues as well as many other medical issues. Her heart was recently repaired (May 7th) and she is enjoying life far more than she was prior to the surgery.

i am glad that you have been able to attempt breast feeding Jillian. Some people don't believe in it as strongly as I do and that is fine, but what you can give her she wont get no other place! I hope that you are able to maintain a supply throughout this tough time, it will pay off in so many ways. If not, don't beat yourself up supplements and formulas work well also. V is 15-1/2 months old and still nursing!

Congratulations again. If you ever need to chat email me or check out the our blog, it may help. I have pictures up of Vada's surgery and recovery and truthfully, I think that she looks good in them. If I were to see something like I posted before surgery, I don't think that I would have been so scared. Smile

Blessings, Peace and congratulations!
T

_________________

Tara,
Wife to Justin and mother to: Jasmine 12/18/99, Kiliegh 5/20/03, and Vada 3/2/10 (Ds, DA-repaired 2010, WS/IS, VSD/ASD-repaired 2011, Hypothyroidism)
http://twilsonismakingthemostoftoday.blogspot.com/

TheBradyBunch · Posted: June 12 2011, 5:10 PM Post subject:

Where in Canada are you from? I'm in the Vancouver area.

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

marlene · Posted: June 12 2011, 11:18 PM Post subject:

Oh my goodness! You guys have had some challenges, to say the least!!! Welcome and congratulations!!! Aleena is our one and only. She was born 2 months before our 15 wedding anniversary after many years of infertility. I was 38 and huuby was 43. Your feelings on the amnio were mine exactly! Are you kidding? After this long, I wasn't taking ANY chances!
Can't wait for your family of three to be together in one place!!!

_________________
Marlene, mommy to my precious Aleena (1/30/04)

marlene · Posted: June 12 2011, 11:23 PM Post subject:

Oh my goodness! You guys have had some challenges, to say the least!!! Welcome and congratulations!!! Aleena is our one and only. She was born 2 months before our 15 wedding anniversary after many years of infertility. I was 38 and huuby was 43. Your feelings on the amnio were mine exactly! Are you kidding? After this long, I wasn't taking ANY chances!
Can't wait for your family of three to be together in one place!!!

_________________
Marlene, mommy to my precious Aleena (1/30/04)

NorasMom · Posted: June 17 2011, 11:06 AM Post subject:

Welcome. What a little fighter she is already. Sounds like she is in fantastic hands with such love. Nora is just 2 wk older than Jillian and will likely have heart surgery in August as well for ToF (Tetrology of Fallot).

_________________

Nora & Katie born 2-28-2011

kim0316 · Posted: June 18 2011, 4:53 PM Post subject:

Quote:

Where in Canada are you from? I'm in the Vancouver area.

I'm about 10 minutes outside Charlottetown on PEI.

Thanks again for the responses. I'm so happy someone told me about this site.

A little update - Jillian came home today for an overnight pass. If all goes well then hopefully she'll be going home for good on Monday.

_________________
Jillian Ruth March 16th - July 30th, 2011. Down syndrome, AVSD and transient leukemia.