So Jim and I are in the process of completing our Parent to Parent training to support new parents of preemies at the NICU at DeVos hospital.
I am not sure how Jim feels about it but I know that it has been very emotional and enlightening for me. I have learned so much about other preemies and what other families go through while they are there and after. We are very blessed with Jed's outcome and outlook, but mostly we are blessed by all the family and friends that support us.
I find myself dwelling on the what ifs of Jed's long term prognosis and my unemployed status too much. It is good for me to find an outlet for my insane amount of energy and intensity. Cooking, cleaning and gardening apparently aren't enough for me. And Jed, and biking and walking and scheduling play dates... oh and Jim thinks I need to start writing a book.
Since I am still mulling that over, (and the suggestion kept me up until 1am last night by the way), I decided to start researching memoirs and other blogs. The blog I follow right now sometimes is: http://tricuspid.wordpress.com. It is called "Adventures of a Funky Heart!" and it is an adult CHD survivor who tells stories of surviving 3 heart surgeries and growing up in rural South Carolina. Steve is great about sharing research on CHD advancements and debunking myths.
I just read an entry about Heart Moms that made me cry. It also made me feel good about fighting for my little Heart Warrior. Jed still has surgeries ahead of him but I know he will be fine. He has to be fine. But I wait for that 1st red flag to go up that it's time for a new Pulmonary Valve. I really don't need to worry until he is 3 to 15 years old though.. really, I don't... RIGHT!
The good news is the boy is walking and actually has been down for a nap for pushing 2 hours, which, in case you didn't know, is a miracle in and of itself. He's like his Mama, doesn't want to miss anything....
We are prepping for the March for Babies walk on April 24th and am getting nervous that we won't collect much money but thanks to Thea Van Vander Van... we are over the $200 mark. I am hoping for $400 and have recruited Jim and Courtney to hit up their friends for some dimes...
Next year I will have to craft a tear jerker letter at Christmas to rally the cash. March of Dimes does some amazing work and without them Jed would not have made it though his 1st weekend of life. So I am very grateful for all that they do...
I am also looking into starting a support group for Mended Little Hearts in the Grand Rapids area. It is a parent group for survivors of CHD surgery. And they have nothing like it here that I know of... so I will find my focus soon I beleive... or maybe I already have?
Lots of Love,
Jana
Tuesday, April 13, 2010
Wednesday, January 27, 2010
Jed is Drug Free
Apparently, I haven't really used the blog like I thought I would but maybe someday I will.
Jed is drug free. He was weened from his last heart medicine last week.
He had his 6 month appointment with Dr. Lacina, his Cardiologist. Overall, Jed is doing well.
There is some back flow in his repaired pulmonary valve. Which I understand to mean that some oxygenated blood is flowing back into his heart. Not enough to be worried about at this point but they will continue to watch it over the next year.
He will need to have a pulmonary in 3 to 15 years. I am all about him having it sooner than later so he won't remember so much but we will do what needs to be done when the time comes.
He is starting to show some signs that he is a "heart baby." He starts to breath fast when he gets too excited. It only lasts a minute or two and at first I thought it was a normal baby thing. But I have sinse learned that it is his heart trying to keep up with him.
Overall, Jed is a normal, happy teething cutie who loves to play and snuggle. He is not walking yet because he is convinced that crawling will get him there fastest.
He loves his babysitter, Jessie Carr. And we are hoping I find a full time job soon so I can stop worrying so much about money and Jed can play with kids his own age 2 days a week. I have found a couple of day care providers that I think Jed would love. Jessie is currently watching Jed on Tuesdays and Thursdays and will take him one more day if I find full time work.
We are blessed and I need to be more grateful for the blessings we have been given. I am so proud of our little family and the life we have together is so very important to me.
We are spending a lot of time praying for our other heart baby friends Samantha P. ease and Henry Doyle. Both babies were born with Hypoplastic Left Heart Syndrome and have to undergo 3 surgeries to correct their hearts. Both babies are doing well and we continue to pray for their good health and the continual research that goes into Congenital Heart Defects at MOTT and around the work.
Lots of Love,
J3
Sunday, January 3, 2010
Amazing
I have been at this Mom thing about a year now and wonder, "am I a good Mom?" Lots of people share opinions, and tips on Motherhood. Some I take to heart and store the advice for future reference.
Advice I like is the recommendation to take Jed out on lots of adventures and don't be afraid of new places and things.And always giving myself the "out" clause gives me the strength to throw on that backpacked baby and go.
Experiencing his first sled ride was amazing. The look on his face was spiritually uplifting. Jed's face lit up with joy, Hs cheeks turn bright red. His nose glows like Rudolf. His neon blue eyes widen, and blink, just as a slow smile creeps over his face. 6 teeth shine out at me. Amazing, motherhood. Simply amazing.
Advice I hate, or maybe it is comments I hate, are from the Moms that make motherhood sound like such a burden. "Oh, you want him to never walk, once he walks it is over." What's over? The backaches? Trips to the Chiropractor?
I want him to grow, because every step he takes, literally and figuratively, is Amazing. Sometimes I wish I had the grace to keep my mouth shut. I think I do when the negative, bitter Mom shares and tries to commiserate. hopefully I at least have the grace to change the subject. I think I fail at that though, because I am so overjoyed to be Jed's mom, that I annoy people.
I am okay with that.
Happy New Year.
Advice I like is the recommendation to take Jed out on lots of adventures and don't be afraid of new places and things.And always giving myself the "out" clause gives me the strength to throw on that backpacked baby and go.
Experiencing his first sled ride was amazing. The look on his face was spiritually uplifting. Jed's face lit up with joy, Hs cheeks turn bright red. His nose glows like Rudolf. His neon blue eyes widen, and blink, just as a slow smile creeps over his face. 6 teeth shine out at me. Amazing, motherhood. Simply amazing.
Advice I hate, or maybe it is comments I hate, are from the Moms that make motherhood sound like such a burden. "Oh, you want him to never walk, once he walks it is over." What's over? The backaches? Trips to the Chiropractor?
I want him to grow, because every step he takes, literally and figuratively, is Amazing. Sometimes I wish I had the grace to keep my mouth shut. I think I do when the negative, bitter Mom shares and tries to commiserate. hopefully I at least have the grace to change the subject. I think I fail at that though, because I am so overjoyed to be Jed's mom, that I annoy people.
I am okay with that.
Happy New Year.
Saturday, November 14, 2009
Jed's 1st week at day care, or Mom's back to work?
The 1st week working after 54 weeks off was uneventful. Which I think is good. The job will be rewarding I think and the work isn't stressful yet.
Jed's new daycare provider is Jessie Carr. Jessie and I used to work together at TGIF 12 years ago and have been friends via Amy Jackson until last year when we had Jedidiah. She has become one of my best and most trusted Mommy friends. I have found myself going to Jessie for Mom advice a lot in the past year and I respect her a lot. She loves Jed and her whole family is wonderful to Jed and he LOVES them too.
He doesn't even seem to care that I leave... it would be hard for me if I didn't know he was so happy and loved and safe with the Carrs.
He is teething like a mad man and still all over the board on nap time. He has a more consistent schedule with Jessie than me. But he does sleep 10 to 12 hours at night. Which is a new thing and the secret to my new found sanity.
Jed is resting with Daddy so he is FRESH for his 1 year photo shoot with Karrn Frost today. Karrn is another Friday's friend from 1997 who popped back into my life via Facebook. Mock it all you want but without it I would have gone insane this past year. Jed and I have tons of new/old friends via Facebook. And the best people in my world are from TGI Fridays.
(Some folks had high school and college buddies and I have Fridays buddies!)
I am super excited about the holidays this year as we were in NICU, DeVos and Mott hospitals last year. So this is really our first holiday as a family.
Since Jed's birthday I have found myself a bit teary eyed every day remembering where we were last year. Like today, Andrea, my sister, and I went to the Byron Center High craft fair. 160 crafters and my xmas shopping is pretty much done. But, for the 1st 20 minutes or so, I was having a hard time because I kept remembering that last year, I didn't buy anything because I didn't know what our plans were for the holidays. Jed was 4 weeks old and in NICU and I hadn't told anyone about his heart yet. I remember that Andrea was shopping like crazy and buying stuff for Jed and I just tried not to cry the whole time last year.
But have no fear for my emotional well being... I was a shopping fool today. Thank goodness I only brought $60... okay I own Andrea $10 but the Kuiper Girls are done... once I hunt down one crafter in Hudsonville next week.
And we are planning to go get trees with Andrea, Jeff and Paige on December 6th. Yeah, last year, Jim was SO MAD about getting a tree. He did not want one. And my Mom was scared to death to watch Jed while we were gone because he was so dusky and sick and just got back home from the stuffed up nose incident that put him back into DeVos 6 days after coming home from NICU.
Yeah and the "I told you so" of it all was that poor tree sat in our house all alone drying up while we were in Ann Arbor for 5 weeks. It was a fiasco tearing it down when we finally got home the 2nd week in January. Thank you MOM for helping!
But this year, we can't wait to get one up and only decorate the top half for Jed!!! Oooohhhh, the wonder of a 1 year old! The plans I created last December in my mind while I prayed at Mott are going to all come to fruition!
I feel like these next few blogs will be me dealing with the memories of last holiday season. So bear with me as I heal and remember. Remembering makes me appreciate all that is good in the world and all the Grace that God has given us. And all the goodness of friendship and family.
So even if I sound teary, know that are tears of thankfulness.
Jed's new daycare provider is Jessie Carr. Jessie and I used to work together at TGIF 12 years ago and have been friends via Amy Jackson until last year when we had Jedidiah. She has become one of my best and most trusted Mommy friends. I have found myself going to Jessie for Mom advice a lot in the past year and I respect her a lot. She loves Jed and her whole family is wonderful to Jed and he LOVES them too.
He doesn't even seem to care that I leave... it would be hard for me if I didn't know he was so happy and loved and safe with the Carrs.
He is teething like a mad man and still all over the board on nap time. He has a more consistent schedule with Jessie than me. But he does sleep 10 to 12 hours at night. Which is a new thing and the secret to my new found sanity.
Jed is resting with Daddy so he is FRESH for his 1 year photo shoot with Karrn Frost today. Karrn is another Friday's friend from 1997 who popped back into my life via Facebook. Mock it all you want but without it I would have gone insane this past year. Jed and I have tons of new/old friends via Facebook. And the best people in my world are from TGI Fridays.
(Some folks had high school and college buddies and I have Fridays buddies!)
I am super excited about the holidays this year as we were in NICU, DeVos and Mott hospitals last year. So this is really our first holiday as a family.
Since Jed's birthday I have found myself a bit teary eyed every day remembering where we were last year. Like today, Andrea, my sister, and I went to the Byron Center High craft fair. 160 crafters and my xmas shopping is pretty much done. But, for the 1st 20 minutes or so, I was having a hard time because I kept remembering that last year, I didn't buy anything because I didn't know what our plans were for the holidays. Jed was 4 weeks old and in NICU and I hadn't told anyone about his heart yet. I remember that Andrea was shopping like crazy and buying stuff for Jed and I just tried not to cry the whole time last year.
But have no fear for my emotional well being... I was a shopping fool today. Thank goodness I only brought $60... okay I own Andrea $10 but the Kuiper Girls are done... once I hunt down one crafter in Hudsonville next week.
And we are planning to go get trees with Andrea, Jeff and Paige on December 6th. Yeah, last year, Jim was SO MAD about getting a tree. He did not want one. And my Mom was scared to death to watch Jed while we were gone because he was so dusky and sick and just got back home from the stuffed up nose incident that put him back into DeVos 6 days after coming home from NICU.
Yeah and the "I told you so" of it all was that poor tree sat in our house all alone drying up while we were in Ann Arbor for 5 weeks. It was a fiasco tearing it down when we finally got home the 2nd week in January. Thank you MOM for helping!
But this year, we can't wait to get one up and only decorate the top half for Jed!!! Oooohhhh, the wonder of a 1 year old! The plans I created last December in my mind while I prayed at Mott are going to all come to fruition!
I feel like these next few blogs will be me dealing with the memories of last holiday season. So bear with me as I heal and remember. Remembering makes me appreciate all that is good in the world and all the Grace that God has given us. And all the goodness of friendship and family.
So even if I sound teary, know that are tears of thankfulness.
Monday, November 2, 2009
Happy 1st Birthday Jedidah
This is Jed's 1st Blog. We have been using carepages.org since his birth but I feel that he is way to healthy to continue using it unless something changes.
For those of you that would like to see Jed's 1st year, you can go to https://www.carepages.com/carepages/Jedidiah_Kuiper and catch up at your leisure.
For those looking for the abridged version I will post one later on.
Jed had a great 1st birthday with his family. I decided that family only was plenty of people and he lived up to the pundits predictions and opened maybe on present and his cousins took care of the rest. We had tacos and rice and cake and Dairy Queen Ice Cream cake too.
Jed is currently over 17 lbs and 29 inches long. His development is almost on track with his birth age, (versus his adjusted age). He is crawling and doing the downward dog, pulling himself up, walking along the couch and getting into everything.
His favorite toys are remotes, phones, books, toy pianos, drums, and anything he can chew on.
He has 6 teeth too. 4 of which have come in over the last month.
I will post more later,
Love,
J3
For those of you that would like to see Jed's 1st year, you can go to https://www.carepages.com/carepages/Jedidiah_Kuiper and catch up at your leisure.
For those looking for the abridged version I will post one later on.
Jed had a great 1st birthday with his family. I decided that family only was plenty of people and he lived up to the pundits predictions and opened maybe on present and his cousins took care of the rest. We had tacos and rice and cake and Dairy Queen Ice Cream cake too.
Jed is currently over 17 lbs and 29 inches long. His development is almost on track with his birth age, (versus his adjusted age). He is crawling and doing the downward dog, pulling himself up, walking along the couch and getting into everything.
His favorite toys are remotes, phones, books, toy pianos, drums, and anything he can chew on.
He has 6 teeth too. 4 of which have come in over the last month.
I will post more later,
Love,
J3
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