Jasper Has Arrived! and surgery today :(

A place for moms and moms-to-be with special needs children to find support.

Moderators: B Michaelson, southernbelle, jessm, 1daysoon, reapage, Honey Bunny, unaffected, maddy, TrebleLily

Jasper Has Arrived! and surgery today :(

Postby mrsjoh » Wed Dec 03, 2008 4:32 am

We welcomed Jasper into the world Tuesday, the 25th of November at 5:10pm. After 22 hrs of labor he was born via emergency c-section. He was 7.7 lbs and 19.3". He is doing well at Children's Hospital right now, and we are able to walk over via a bridge and visit wtih him all the time! He has a very sweet face and a quiet disposition. I think he has Chris's eyes, although we see a lot of different people in him. He defin has Dembowski feet though! (long feet and toes! ) We have been getting some info from the cardiologists but it will be a couple of days before we get a full picture. Speaking of pictures we will have some uploaded tomorrow, hopefully!Mom is feeling better and better every day, and dad is holding up pretty well too. The hospital staff has all been great and we are just enjoying every momemt we can with our beautiful new baby boy!!!!


So they had to do a breathing tube as he came out blue and not breathing, I did get to see him for a quick sec befroe they brought him up. He is up at the CICU and hopefully today, Thurs he will be off the ventilator, they say he is doing most of the breathing. For a dx, they THINK it might not be HRHS... but we don't have a clear picture, they think, double right ventricle, D-transposition and a large VSD, 2 drs are debating wether they think the right is smaller or not. So I wonder if they will go back to tof? ONly time will tell. I wish I had my baby with me ,but just being thankful for all the time I get. Also they are wondering about syndromes as his ears are a bit low, he has skin tags, and his lower chin slants in, (no cleft) so they are just doing more testing etc. Also, he was stuck in the birth canal, hence the csec, and his head is very swollen on his left side, thye are doing an u/s on it Fri, dh is worried about him not looking normal. But hopefully it will go down. In the left ear as well there are 2 flaps of skin that are there as well. If anyone has any syndomres they know of that sounds like this, would love to hear about it!

They had a big conference Tues AM, 60 dr.s and Jaspers Case was the highlight, apparently his heart is very unique, and doesn't fit any one type of diagnosis exactly. So everyone had quite a time discussing it. They are not sure which procedure they will end up doing Wed am, either a shunt (which will require the complete repair in a few months), the complete repair, or a little of both. Dr. Bacha said if he had a child with a CHD and lived anywhere in the world, he would bring him to Children's...

we are very scared and I am finding it very difficult to be strong :( please pray for Jasper today
Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
Image
Image
[url=http://www.TickerFactory.com/]
Image
User avatar
mrsjoh
Star Member
Star Member
 
Posts: 362
Joined: Tue Mar 11, 2008 12:00 am

Postby hoping4another » Wed Dec 03, 2008 8:34 am

I am glad to hear that your LO is here. My prayers are with you, jasper and your family as you go through this journey. Please KUP!
Image

me: 32
DH:35
DS1: 5 years old
DS2: born 10-8-08
baby BOY #3 due Aug 31, 2010!!!
User avatar
hoping4another
Angel
Angel
 
Posts: 438
Joined: Sun Feb 17, 2008 1:00 am

Postby manynums » Wed Dec 03, 2008 8:49 am

The NICU and surgical ride is hard. My daughter has Spina Bifida. She's had 4 surgeries (3 in the first 24 days) and we were away from home. Which Children's hospital is she at (I can't see your blog at work)? We were at St Louis and it was amazing...but I know most Children's hospitals are awesome.

PM me if you need any help/advice. Sasha had a slight VSD, but it's closed on its own. Originally they felt she might have Hypoplastic Left Heart Syndrome on the original ultrasound where they discovered the SB. After a Level II U/S, that diagnosis was removed. She was left with Chiari II malformation, Spina Bifida (Myelo), and two severely clubbed feet.

She's so gorgeous now...straight feet, no heart defect, Chiari is not causing any problems at the moment, and her SB lesion is healed and gorgeous.

You are going to be OK. Jasper will be how Jasper will be...and that's okay, too. Cry as often as you need to. Ask for help. Keep people informed through your blog or a Carepage/Caring Bride page. This will keep the load off you providing information because you can just say, "Check the webpage".

HUGS...and Congrats on your baby boy!
Breastfeeding, babywearing, cloth diapering WOHM. Married to my HS sweetheart & best friend. Proud mama to my two chicklets.

Image Image
User avatar
manynums
Girlfriend
Girlfriend
 
Posts: 4076
Joined: Mon Sep 24, 2007 12:00 am

Postby mrsjoh » Wed Dec 03, 2008 3:01 pm

thanks! he is out of surgery and back in his room at the CICU! they ended up not being able to do the complete repair, due to his size, his complex heart etc, so we are looking at another surgery 6 mos out and then another at 2 yrs, but right now i am just thinking about his recovery and taking him home in a couple of weeks. We are at boston childrens and yeah, wow they are awsome! I can't believe how great they are, they really make this easier, if that's possible.
Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
Image
Image
[url=http://www.TickerFactory.com/]
Image
User avatar
mrsjoh
Star Member
Star Member
 
Posts: 362
Joined: Tue Mar 11, 2008 12:00 am

Postby delta » Wed Dec 03, 2008 5:03 pm

thats great news!!! Where they able to do some of the surgery at least? I wondered if the VSD could close on its own. My DD3 has an ASD and it was moderate to large at birth and is now down to a small size.
DD1-3/9/85, DS-10/29/87
m/c-1/12/06 - 9w
M/C-2-12/10/07 - 8w4d
ImageImage
ImageImage
ImageImage
ImageImage
User avatar
delta
Girlfriend
Girlfriend
 
Posts: 4060
Joined: Thu Aug 10, 2006 12:00 am
Location: Southestern MT

Postby dixiechicken » Thu Dec 04, 2008 6:22 pm

Congratulations Mrsjoh! I can't wait to see pictures! I know this is a tough road for you, and I'm sending prayers!
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
ImageImageImage
Image
User avatar
dixiechicken
Girlfriend
Girlfriend
 
Posts: 3088
Joined: Thu Sep 07, 2006 12:00 am
Location: Fort Worth, TX

Postby mrsjoh » Sat Dec 06, 2008 3:46 am

they did the shunt surgery as the heart was just too small to do the complex work the surgeon wanted, which is to nudge the aorta vein more into the left ventricle, close the hole, and work on the pulmonary valve, he has double outlet right ventricle, pulmonary stenosis, d-transpostion and a vsd.

The CICU is getting to me. I am so ready to be out of there! Some parents there seem so strong, and I often cry a lot esp when I am in the pump room. Although I am getting better. My sister and her dh came to visit yesterday and I could tell they were nervous, I know it's hard seeing a baby in this condition, and he is doing great now as his chest tubes and breathing tube are out. He just has the ng tube in his nose so he can get breast milk pumped in faster. I just want to bring him home, I can't wait to just sit on the couch with him, feed him and watch his fall asleep.
Image
the night before surgery

Image
Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
Image
Image
[url=http://www.TickerFactory.com/]
Image
User avatar
mrsjoh
Star Member
Star Member
 
Posts: 362
Joined: Tue Mar 11, 2008 12:00 am

Postby 1KuehlBaby » Sat Dec 06, 2008 7:20 pm

It is great that Jasper is finally here! I can imagine it is hard having to deal with being in a NICU. I will be facing the same fate if God allows me to carry Kaden to term. We are being seen by the specialist at UC San Francisco on Friday, and I am praying that we will be given some hope for him. Jasper is absolutely BEAUTIFUL--cherish every day!! My thoughts and prayers are with you, DH, & baby Jasper....
Me 39 DH 35
DD 17, DS 15, DSS, 6 and our Angel Baby Kaden Alex born 4/3/09. Lived 17 days fighting Congenital Diaphragmatic Hernia (CDH)
http://www.KadenAlexKuehl.blogspot.com
ImageImage
1KuehlBaby
Angel
Angel
 
Posts: 442
Joined: Fri Nov 14, 2008 1:00 am
Location: Northern CA

Postby dixiechicken » Sat Dec 06, 2008 7:23 pm

Jasper is absolutely adorable!!!!!! So stinkin' cute! Love his little hat. Are you able to hold him? The NICU is VERY difficult. Vent away if you need to! We were only there for 16 days. I don't know how people do it for months! I hope your stay is short and you get to take Mr. Jasper home soon!!!

ETA: I just went back and looked at the pictures again. His little frown in that last picture...breaks my hear. It's like he knows the surgery lies ahead! :cry: However, there's something about his sweet little face that just draws me in.
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
ImageImageImage
Image
User avatar
dixiechicken
Girlfriend
Girlfriend
 
Posts: 3088
Joined: Thu Sep 07, 2006 12:00 am
Location: Fort Worth, TX

Postby Vi » Sun Dec 07, 2008 2:52 am

He is soooo cute!!
Image

Image

Image

Image
Vi
Angel
Angel
 
Posts: 432
Joined: Fri Jun 27, 2008 12:00 am
Location: Alaska


Return to Special Needs Babies

cron