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July 10 BrooklynIt's hot and I'm pregnant! Not sure how much I will continue to blog on Jolee's website. I might start a new blog to share photos of Blake and funny stories etc but I don't get around to blogging much in the first place so we'll see. I want to continue to share our CDH experience - it's changed as time goes on. First we wanted to share updates about Jolee. Then it was nice to know that we're not alone as we grieved the loss of our baby girl. We've celebrated her first birthday and I want to thank those who helped contribute to Ronald McDonald House with us. I hope we can continue this tradition to remember Jolee and help others. Now that we're expecting again I hope it helps to share our experience with pregnancy after losing a baby to CDH. I had a third trimester ultrasound and everything is still looking good. We got to see our new little girl (we're planning on naming her Brooklyn) on 3D ultrasound! I've been really happy with the midwives group that I'm going to. The last one that I saw took a look at my chart and just started off asking how I was really doing. We've started cleaning up the baby room. We've had to put some of Jolee's things away for now but Brooklyn has to have her own room. She's not a replacement for Jolee and Jolee will always have a place in our home - but our home is only so big! Blake totally understands that Brooklyn is not Jolee even without us explaining it to him. He's pretty sweet. He calls Brooklyn and Jolee "baby friends." He's going to be a good big brother.
Anyways - hi to everyone! I keep up on your blogs and think of you often. Krista May 15 Jolee's birthday - May 17th We're having cake on Saturday at our house for anyone who'd like to join us (between 2 and 4 - just drop in). We can celebrate Jolee's life and lessons we learned from her. The rainbow has taken on special meaning to so many people thanks to JJ. Thanks to everyone who's shared rainbow pictures, poems (see Silas' link - thanks Tanaya!) and sightings - it's reassuring to me to know how JJ's life touched others. Also on Saturday, we'll be getting the RMH donations ready for Jolee's grandma and papa to take down to Portland. WE MISS AND LOVE YOU JOLEE. HAPPY BIRTHDAY!!May 07 Remembering Jolee's birthdayHappy birthday to Audrey and Parker!
JJ's birthday is only 10 days away - can't believe it. Just wanted to share that we're going to take donations instead of a meal to Ronald McDonald House one of the weekends later in May. Anyone can donate to Ronald McDonald House online through their website but here is a link of items on Portland (east)'s wishlist. http://www.rmhcoregon.org/section.cfm?wSectionID=1166
Contact me for more info.
In other news, we moved into our newly constructed chiropractic office last week. That same week I turned 30 and had a toothache that resulted in a root canal. Things have been hectic! I have another OB appointment next week. I think I'll take Blake with me to hear her heartbeat. He has been asking so many questions about babies - including how she'll come out (will she break your tummy?) April 03 Blake and Jolee's little sisterFor those of you who read our last update and are wondering ... We went to another fetal-maternal appointment for an 18 week ultrasound. Everything looks good! And it's a girl!
I'll update more later with other pregnancy details and more about Ronald McDonald House.
Krista March 21 Long time, no updateHi to everyone. It's been a while since I've blogged but I always do keep up to date on on my CDH and other online friends. Belated birthday wishes to Jackson, Drew and Avery!!
We've been busy with our new business!! I've been pretty stressed about it, but so far we've survived and can afford to eat. I work 3 days a week in the office and lots of stuff on the side. We think about Jolee everyday, but it's difficult being around so many people who don't have any clue what we've been through this past year. The worst are the people we bought the business from. We told them and basically got no response and they have been so selfish and unhelpful through it all. They signed in the closing papers that they would provide assistance for 3 months and every time I've asked for something, they just give some lame answer that usually never helps. I just have to gripe about them!! I guess everyone has some amount of buyer's remorse - we just got stuck with a lot of their leftover junk that they just didn't deal with because they knew they were selling. We have to be thankful that we have their old patients still coming in though.
Other news, Blake is getting close to being potty-trained. For awhile we thought it might never happen because he just didn't want to slow down. So hopefully he is completely trained before August because that is when we are expecting a new baby! We've been really slow to tell everyone but the 12 week ultrasound looked normal and my next is on April 3rd. It's hard not to have mixed feelings about being pregnant again. But it's never going to feel right that Jolee is not here! We can't replace her and we're not trying. We and Blake just want another addition to our family and we'd like him/her to be closer in age if possible.
I can't believe we've already come a full year on other CDH friends' births and Jolee's is less than 2 months away now. I really don't know what we'll do to make her birthday special. We've thought we'd like to provide a meal at the Ronald McDonald House. We'll have to see what that involves and what's available that works with our crazy lives right now. One family provided an easy but tasty meal while we were there - roasted chicken, potato salad, carrots, rolls, strawberries and pound cake - all from Costco. Let me know if anyone wants to contribute in anyway. It's something that would be neat to do once a year because RMH is such a blessing for families in the situation of having a child in the hospital. I always thought it would be revolve around McDonald's but the one in Portland was great. Lots of food and resources and just one statue of Ronald on the playground.
Happy Spring! KristaJanuary 03 The day that changed everythingThis day one year ago was the day we were diagnosed. It's just a hard day and I remember it well. We were so scared with the news and hated feeling like we had to make a life or death decision. To me it just always felt wrong to terminate and not give Jolee a chance. Hopefully as more can be learned about CDH others can feel more hopeful as they face this diagnosis. I was just looking back at some of the first websites we visited one year ago. CHOPS (Children's Hospital - Philadelphia) has a new DVD for families who have been diagnosed with CDH. I'm really interested in it because it says it talks about research. Anyways it can be accessed through my CHOPS link at the bottom of the page - I hope this can help someone.
 KristaDecember 12 Jolee's Garden BrickThanks again to MOM'S Club. Jolee's brick has been placed in the Children's Garden at Legacy Emanuel Hospital. This was part of the fundraising done through making bracelets for CDH awareness and remembrance of JJ. $350 was given in memory of JJ through these efforts!
Another thanks to those who helped out with our FBO account (for benefit of). We just recently received another gift and the bank doesn't tell us who it comes from so I just like to say thanks here and hope that person(s) know how much it helps us. It's unbelievable - but we still have received a few statements in the past month for May. November 30 Can't sleepBlake woke up at 2 am. He went back to sleep fine but I can't. My problem is I can't stop thinking of stuff - between Jolee, the holidays and our new business, I'm overwhemed with what this year has brought! I know that we're managing to get quite a bit done each day but there's always that list in my head. And back to the holidays, they're just not the same this year. Last year, we were celebrating Christmas, New Year's. Everyone knew I was pregnant, I was starting to show and then Jan 3rd came and we learned of Jolee's CDH and everything changed. I just feel like staying in this spot in time because it makes me feel closer to her. As time goes on, others speak less of her. It's painful and scary to move on but we're forced to. Someday, I'd like to retell JJ's story over on this site so that it might be more helpful to others - especially to expectant CDH families or those who would like help with CDH awareness and research. But for now, this blog is just what it is. And I enjoy reading other CDH blogs because they've helped me to not feel so alone. Anyways, a few tears and a computer screen make my eyes tired so I guess I'll try to get back to sleep before Blake is up. October 31 Tear SoupWe were given a book by the Ronald McDonald house called Tear Soup. It's not quite written for a two year old, but Blake for some reason really likes to read it. It's a book about grief but he thinks that Tear Soup is the name of the dog in the book. Anyways I though I might share it because it good for people of all ages and includes other good resources (see http://www.griefwatch.com)
I had a rough day on Sunday - I received a watercolor picture of Jolee. It's beautiful and breaks my heart at the same time. I'll try to share it soon. Then next Saturday, the 4th which is always a difficult day, we'll be heading back to Portland for a remembrance ceremony at the Children's Hospital at Emanuel.
Anyways, we're keeping busy with something we'd started last year...starting our own business. It's pretty overwhelming considering the year that we've had. I've read or heard it said that you shouldn't make any big decisions within a year of your loss. We're breaking that rule, but we have lots of support and I think things are going pretty well. I know they could be a lot worse.
 KristaOctober 04 Don't know what to sayPeople don't know what to say so they usually don't say anything. I guess I can relate. The last time I blogged, I typed a few things I was thinking and then deleted them. I didn't want to come across as depressing or something. I'm the kind of person that worries what people will think even though I'm learning that it doesn't ususally matter.
I guess another thing that is so sad and makes it difficult for people to talk about is that Jolee spent her entire life, outside of me, in the hospital. The whole situation is sad and difficult but was what we had to do to give Jolee a chance because we loved her and continue to love her 4 months after losing her.
We just received out bracelets from Rainbow of Hope today. They can be ordered through the website. Thanks Jana! Thanks also to Breath of Hope who is responding to my post about directing money towards CDH research - I'll post more as I review it. September 19 See a Rainbow & Remember Jolee JeanJolee's marker was placed today. I'll add it to the slide show.
Check out the recent additions to the Rainbow of Hope website - a silicone CDH wristbands are now available (similar to the Livestrong ones). http://www.arainbowofhope.com
 KristaSeptember 08 Blake-isms and dreamsAlways wonder what Blake is thinking in that little 2 and 1/2 yr old brain. He still remembers me being pregnant and looks at my belly and asks about Jolee Jean - what's she doing? Yesterday he said he had a baby named "Bungle" in his belly and that she was sick:(
Mom Scott had a dream about Jolee about a month ago in which she was happy standing in her crib. I just had one the other morning too! Someone was helping us dress her into a pink and lavender outfit on our changing table and we were cooing back and forth. In my dream, she looked a lot like Blake in his 3 month picture while his hair was still dark.
I guess this all just shows how much JJ will remain part of our family even though our time with her was too short. KristaSeptember 04 In Loving MemoryCheck out the following link if you are interested in a CDH bracelet-making effort like my local MOM'S Club did to raise money for a memorial for Jolee Jean:
Thanks Becci and MOM'S Club!!! You have been a great support.
We miss you JJ!!!
Deepest sympathies to the Olson family who lost their son, Joseph, to CDH on August 25th.
We are hanging in. Went to a local support group for families experiencing miscarriage, stillbirth or infant loss. It is nice to have this time to talk about JJ because it becomes more difficult to mention her as time goes on. I think of her and what our lives should be like all the time but it just doesn't seem to be what people would want to hear. Especially strangers. I've really come to hate the routine "how are you today" question you get at the checkout counter.
Now that summer nearing its end, our lives will get a little more routine again. We have some projects started and they will keep us busy and distracted. I've started JJ's scrapbook - it will be a slow process because I'm so particular. I'm proud of the pages that I have finished so far and knowing how our family will always treasure it makes the hard work and time worth it of course.
August 04 Anniversary and Rainbow SorbetWe've been missing Jolee now for two months. Just want to share a couple things. The following is a poem written by Jolee's great aunt Mary called Jolee's Rainbow:
Oh, beautiful rainbow, what do we see?
A thousand little angels and our sweet Jolee,
Who crossed your golden arc to the azure above,
To peace and comfort, in the cradle of love.
Another thing I've read in a couple places:
When your parent dies you've lost your past, but when your child dies you've lost your future.
I really identify with this as I've experienced both. With the loss of Jolee, I feel lost. We wanted her and we'll always have an emptiness where she should have been.
Can't help but continue to follow the stories of other CDH babies and their families. Our deepest sympathies to the families of Baby Mert and Baby Judah. Thinking so very often of Baby Joseph and his mommy. Congrats to Baby Jackson for going home!
Trying to do things to memorialize Jolee's life. We've got things started to design a marker at the cemetary - of course it has to have a rainbow on it. Getting things gathered for a scrapbook. I've written a letter with an idea to honor JJ - I'll share more later if I get a response. Jolee's papa got a tattoo with her name and heart. Joe wants one too but I told him we have to pay a few other bills first - he has a huge fish tattoo that cost $4oo! I'll try to get tattoo pictures up sometime. I did add a picture of a rose we received as a gift - it's called "Rainbow sorbet." It turns so many colors as it opens up from the bud. See the picture - it's the last slide on the current album.
 KristaJuly 10 Another rainbowAt our family's fourth of July party (one month to the day from Jolee's passing), we had a rainbow sighting. We didn't really want rain that day - but it meant a rainbow!
It's amazing how many visits our space has had, over 11,000! If we'd have known that when we started, I'm not sure I would have gone through with it. We debated sharing all the details with anyone who has internet access. But, it helped our family and friends get to know JJ and her journey. We were also so glad to meet families of other CDH babies this way and gained even more support. One comment we received was from Audrey's grandpa (I'm guessing from his page). He suggested the book "When Bad Things Happen to Good People." I'm not sure that I would have read it so soon, but my sister got a copy and I ended up reading it all this past week. It helped put some new perspective to some of the thoughts and questions I've had. "Sometimes there is no reason" is one of the chapters and also "God can't do everything, but he can do some important things." Anyways, I don't have the energy for a full book report but I thought I'd share that I found it helpful. Next I plan to check out the book that Lauren and Jana have talked about, "Empty Cradle, Broken Heart."
I had my postpartum appointment. I guess I picked a good time to go - the day after the 4th and just before lunch. The office was pretty quiet. My doctor and nurse were just so kind. We talked about how people can be afraid to bring your baby up or how you are doing because it upsets them to upset you. I know how this is from when my dad passed away while I was in my first year of collage. We're blessed to have so many people reaching out to us.
Pray for another CDH baby and his family. Judah was born the end of June at Emanuel - he's currently on ECMO and not doing well. He has a webpage you can get to through Baby Silas' link at the right. July 03 Rainbow sightingsCan't believe it's been a month since JJ has been gone. We miss her so and think of her so much. Still have a range of emotions going on. There is still the shock, questions of why and anger. I know that I should remember the rainbow that we saw going home the day JJ died but I still get so caught up in all the other feelings. Thanks to Kylie's mom for telling us about their rainbow sighting. It means so much that you shared that with us and think of JJ too. We haven't seen any rainbows in the sky here because we've had a good dry spell, but we have seen a few little rainbows in the spray of Blake's sprinkler. We also got a picture collage from Shawn showing us in the Children's Garden with a rainbow coming into the garden and Jolee in the sky (it's slide 9 in the current album).
My postpartum appointment is on Wednesday. I know it will be difficult to go back to his office, right next to the hospital and Ronald McDonald House. I could have gone back to my midwife's group but decided to see the perinatologist one more time. Can't help feeling attached to the doctor who we've gone through everything with. We received cards from his office as well as the neonatologists and surgeon. They all wished too for a different outcome and thought Jolee was a brave little girl.
The bracelets have gone over very well - we'll have at least $250 to donate to the children's hospital and will be able to get a brick for JJ in the garden. Thanks for everyone who's supported us in that. June 24 Rainbow of HopeJana, the mother of another CDH angel, started a website that focuses on CDH awareness. It's http://www.arainbowofhope.com and I think it has a great name and logo! June 20 More bracelet infoAs mentioned in our previous entry, my local MOM'S Club made some CDH awareness bracelets. They cost $10 and at least $5 from each will go towards Legacy Emanuel's Children's Hospital Foundation in memory of Jolee Jean. They have CDH and a ribbon bead. Also there is a J bead and emerald crystal attached to the clasp to remember Jolee and her birth month. For a bigger picture see slide 8 in the photo album or click on the picture below. The bracelets measure 7 inches in length - let me know if you're interested in a longer one because we'll be making some longer bracelets too. You can write checks to MOM'S Club of Port Orchard ($10 + 1.50 if you need it shipped). Please email for mailing instructions.
Thanks, Krista
P.S. We've had some questions about the pop tab collection,etc so here's the info again. You can give the pop tabs directly to us or collect them and drop them off at a local Ronald McDonald house that participates. See the following link http://www.rmhc.org/content/rmhc/index/programs/ronald_mcdonald_house/pop_tab_collection.html
For the Children's Hospital Foundation http://www.legacyhealth.org/body.cfm?id=606
Our FBO account (For benefit of Joe and Krista Scott - for medical expenses) is through Washington Mutual http://www.wamu.com for locations. June 15 First week backIt just doesn't feel right to be home without our baby. We knew that it was going to be rough to have a baby with CDH and were prepared for the long haul. We didn't think things would turn out as they did - Jolee seemed to get off to such a good start. We're glad we gave Jolee the chance at life because there are so many CDH survivor stories. We haven't thanked all the CDH and NICU families we've met through Legacy Emanuel and online. Thanks for sharing your stories - both survivors and angels. It's been wonderful inspiration and support. We can't help but continue to watch everyone's blogs and hope to keep in touch every now and then with a comment, email or through Breath of Hope.
Thanks also to everyone who has made donations in memory of Jolee and provided us with meals and flowers. Big thanks to Marsha for setting up the FBO account for us and for those who have donated to that. We will use the funds towards our medical bills (the bill for my two days in the hospital already came today!) and any leftover to the Children's Foundation.
Joe is back to work this week. Blake and I have gotten out of the house for a few activities. With inspiration from Jana's friend Dawn, my local MOM'S Club friends organized a CDH bracelet making session (got 50 done in one afternoon!). The bracelets have the initials CDH and a ribbon. They also have two charms hanging from the clasp - one is a J for Jolee and the other is an emerald bead for May. We plan on selling them for $10 with $5 of each sale going to CHERUBS or the Children's Foundation. Let us know if you're interested (josefscott@hotmail.com).
I have a lot of emotions going on right now - tears, anger and what ifs, shock. But I am so glad we've shared our story because we don't feel alone. And we're so happy to know how many people shared our love for Jolee!
Having Blake keeps us going - literally and figuratively. Just about a week before Jolee was born, Blake slowed down long enough to feel her having the hiccups. Yesterday, I was feeling my belly and Blake saw me and said "is she hiccing up?" He recognizes pictures of his sister but doesn't understand that she's gone. He seems glad to be back in his home routine but still asks to go to Ronald McDonald's house.
We'll keep trying to post every now and then to let you know how we're doing. Love, Krista |
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