2012 Buddy Walk

12 days ago I heard about the Buddy Walk in Columbus at The Crew Stadium, only about 40 minutes away from where we live. I wasn't sure if this was something I was ready for so soon after Ethan's delivery. I knew he would be too fragile to come with us. I tossed the idea for a couple hours and decided this is a new tradition I want to make sure we are apart of every year. We decided on a team name "TEAM ETHAN", registered our team, and everything took off from that point. After 12 days, our family and friends raised over $1800!!!! We had over 35 walkers that joined us today to support Ethan, our family, and Down Syndrome awareness. I can't explain to you the overwhelming excitement I had to see all of these people coming together for such an awesome event. 



 

TEAM ETHAN!!!!!!!!

 



There were over 5,000 people at this event, largest crowd to date. I was honored to be apart of something so special. I had received a text from the girls I used to work with- my Berger ER family. They sent me a picture of them holding a sign for "GO TEAM ETHAN". It's truly amazing the amount of people that have come together since he was born. He has so many people cheering him on! The walk was a casual 1 mile walk around the top of the stadium, once we were in the stadium and got up the ramp. There were cheerleaders that greeted us with "GO ETHAN GO!!!" It was beautiful!! There were pictures and banners of all the kids we were supporting as we walked around. Eli and his daddy made a sign for him to carry (which got handed off a few times to his cousin Hayden- she was very happy to take that job!) It said "Ethan is my little brother" with pictures of the two of them.

Berger ER

I was so happy to meet up with some people I have been talking to. One of them being a family for "TEAM ADALYN" (3 mos). I was introduced to her mommy, Allison a couple weeks ago through another mommy, Jessica- her daughter is Madison (4mos). The 3 of us share very similar stories. We are younger moms with children that have Down Syndrome and all 3 of our kiddo's share similar heart defect. Madison had her surgical repair the beginning of August and is doing extremely well. Adalyn had her surgical repair then end of August, she is at Children's recovering, but it doing well and we pray she will be home soon with her family!!!!

"Team Adalyn"

Matthew and Allison

I also got to finally meet up with Michelle, she runs the local group here in Lancaster. It's been awhile since she has gotten a group together due to the wide age ranges, but I'm excited to get a play group started locally. I know of a few other local moms interested and it would be awesome to have the local connections!!

I want to share this experience with you for those that could not join us today... Please see the link below and enjoy!! Somehow the pictures are in random order, but you get the idea :)

A HUGE THANK YOU TO EVERYONE!!!
Pictures from the 2012 Buddy Walk   <<< click here for slide show!!!

Another weight check... 5 wks old!!

After starting lasix last Monday, Ethan lost almost 5oz in 5 days?!?! He was down to 7lb 14.5oz. Today his weight was 8lb 1.5oz :)!!! His doctor decided it would still be a good idea to add in a small amount of formula for the extra calories. Breast milk is about 20 calories per ounce, so by adding a teaspoon of formula it's now 24 calories per ounce. Unfortunately the combination of the heart defect which is causes him to be completely exhausted and down syndrome causes him to have low muscle tone- he is just having such a hard time eating. Just when we think he get a good amount of a bottle in he throws it all back up!!! So we have had to change his bottles to a smaller nipple. It looks very similar to a premie nipple, a friend of mine got them for us when we were in the NICU. They are very helpful with kiddos with Ds, since there mouths are so tiny. It also helps him to stay latched onto the bottle and decreases the amount of extra air he sucks in. He doesn't seem to mind the formula, but we have only given him 3 so far, but I can tell in his diapers... YUCK!

We have such a busy week coming up! We are getting family pictures done with our good friend Angela. The buddy walk is on Sunday. We start the early intervention program "Help Me Grow". Then we have our 1st appointment at the Ds clinic at Children's. WHEW :) oh and Daddy's Birthday is next Sunday!!! It's amazing how all of this just becomes apart of our life now. If you wouldve given me this schedule when I was pregnant. I would have probe thrown my hand s up and said ya right!!! It's been quite amazing to say the least. I certainly do not feel like in on maternity leave. I haven't gotten the chance to truly enjoy the time off.... I hope to have a few weeks with the boys after Ethan's surgery before I go back to work. The plan for us now is for me to stay at home whether that be 3, 4, or even 9 months. Ethan is so fragile there is no way I would have someone else care for him.  On that note... Good Night, sweet dreams :)

Pictures

Alicea Irwin contacted me a couple days ago to see if I was interested in having a newborn shoot done of Ethan. She has been doing photography for about 5 years, but had not done an actual newborn shoot. I was so excited!!! I was honored that Ethan was her 1st newborn. We went today and once he got his tummy full she got to play around with him. He did so well. We had so much fun. Here are some sneak peaks. Thank you so much Alicea




















My absolute favorite. This brought tears to my eyes. I'm so in love!

Losing Weight

Well we made it to almost 1 month with everything going fairly well. Ethan was started on lasix on Monday with cardiology where he weighed 8lbs 2.5oz. Today, at his 4 weeks f/u he weighed in at 7lbs 14.5oz, so down 4 oz since Monday. We will see children's home care on Tuesday for a weight check, if he continues to lose more weight we will have to see cardiology at Children's or even have to be admitted so they feed him down the NG tube (feeding tube through his nose to his stomach). The pediatrician said the weight loss is more than likely due to the fluid backing up in his heart and lungs since his heart isn't pumping as well. So when cardio added the lasix it helped drain this off. So the weight he put on was fluid weight not actual body weight. If he is maintains this weight and doesn't continue to lose then we will as higher calories supplement to the breast milk. I've been unable to breastfeed directly for about a day. He just cannot tolerate the increased workload on his heart. There is no problem with my milk supply, so I pump. And pump. And pump.... all day long! It's getting more and more difficult with feedings. I start a bottle at let's say 6pm, he doesn't finish until nearly 7pm (which is a task to keeping him stimulated to take at least 2oz!!) then he is hungry again by 730-800pm and the process starts all over again. My worst fear is an admission at Children's. That was all mentioned if his weight did not pick up... I certainly will do whatever it takes to get him where he needs to be for surgery.

I'm starting to feel the increased stress of everything going on. I'm getting to pulled to all these different directions and I can barely keep up. We have known about Ethan needing open heart surgery what seems like forever ago, but it's all starting to settle in. In one way I'm ready to move forward towards surgery and on the other hand I'm completely terrified.

So you can see why Eli would be acting out and striving for our undivided attention. there is only so many quiet activities a 4 year old can do!!! But the house will always be here, it will always need cleaned. And it will get done eventually. I know I have said this a million times but I'm so thankful for family and friends who have brought over meals or gift cards for dinners. It's impossible to make a dinner at this point. We have had neighbors inviting Eli over to play. I'm just so amazed how helpful very one is.

The one thing I have been able to focus on is the heart walk coming up in a week!!! I'm so excited we decided to do it this year. I'm overwhelmed with the amount of support we have gotten. I'm excited to meet other families and introduce our family and friends to this new life along with us. Since Ethan is at an extremely fragile state we will not be taking him with us this year. We will be there to honor him!

Please continue to pray for us!

Buddy Walk @ Crew Stadium September 23, 2012

TEAM ETHAN

 

 

 

 

 As a family we will be participating in our 1st walk for Ethan to help
raise awareness of Down Syndrome. We invite all of you to walk with us on this journey. If you would like to walk or make a donation please click the "TEAM ETHAN" link below.
Thank you so much in advance

TEAM ETHAN

 

2012 Columbus Buddy Walk®

Sunday, September 23
Crew Stadium
One Black & Gold Boulevard
Columbus, Ohio 43211

EVENT DAY SCHEDULE:

7:00 Tailgate Area Open for Set-Up
9:00 Registration Begins
9:45 Opening Ceremonies
10:00 Open Walk Start Time
11:30 Closing Ceremonies

Event is scheduled rain or shine.

Join the Down syndrome community as we unite for a common cause and raise funds to support the Down Syndrome Association of Central Ohio and the National Down Syndrome Society. Whether you have Down syndrome, know someone who does or just want to show your support, take the first step and register today!


What is the Buddy Walk®?

The Buddy Walk® was established in 1995 to celebrate Down Syndrome Awareness Month and promote acceptance and inclusion of people with Down syndrome. The Buddy Walk® has grown from 17 walks in 1995 to nearly 250 walks planned for 2012 worldwide. In 2011, more than $11.2 million was raised nationwide to support local programs and services, as well as national advocacy and public initiatives of NDSS that benefit all individuals with Down syndrome.Whether you have Down syndrome, know someone who does or just want to show your support, come and join us! At the Buddy Walk®, you will join 5,000 walkers from all over Central Ohio as we unite for a common cause and raise funds to support the Down Syndrome Association of Central Ohio and NDSS.

What does the Columbus Buddy Walk® fund?Funds raised through the Columbus Buddy Walk® will provide critically needed family support and services.
For example:

• $100 will fund two New Parent Packets for parents who have a newly-diagnosed baby with Down syndrome
• $200 will fund a full recreational scholarship to enable a person with Down syndrome to participate in health and fitness activities to improve their quality of life.
• $250 will enable a self-advocate to attend our Adult Mini-Conference.
• $300 will fund a workshop for parents on a topic such as IEPs or potty training.
• $500 will fund materials, babysitting and refreshments for a DSACO support group for one year.

Eli's 1st Day of Preschool (& Ethan's 1st Cardiology appt)

I'm starting to master the busy schedule to having 2 kiddo's! Eli started preschool at Redeemer Lutheran Church today. He had to be there by 9:00am. I was up by 6:00am to get myself awake and ready, by that time Ethan was aware and hungry, shortly after that Eli was up... I'm so proud, we made it there at 8:58 :) LOL those who know me are probably laughing since I was early! I never shed a tear. I honestly did not have time to think about it. He was busy playing with toys. He wouldn't let me take pictures of him today, but I did sneak 1 of the boys. I also took a few on meet the teacher day last week. I cannot get over how "BIG" he looks. He has certainly been my big helper. He genuinely LOVES his little brother and tells me this often.

 

 

 

I not only tackled getting Eli off to school, but I also managed to pick him up on time! I know crazy!?!? Just in time to grab lunch and get Ethan ready for a L O N G 1st visit to Dr. Weller's office at Children's cardiology. Thank HEAVENS for family. my sister came over last week to give us haircuts. She put clothes away (YAY!! SHE'S AWESOME!!) My parents kept Eli this weekend- they went camping. It's all he has wanted to do all summer. There was no way I was camping during the 90+degree weather! My mother in law and father in law are right there to help out with keeping Eli during dr visits. I've learned really quick, that if someone asks to help- they really want to :)

So our "couple hour" cardiology visit turned into a 5 hr trip, including travel time to and from. I was solo for this trip. Matt was working. I actually sent him to work, thinking no big deal I got this... Little did I take into consideration of the exciting morning of Eli's 1st day, drive time, feeding Ethan, packing up the car for just an office visit, walking across campus to even get to the office (1 mile)!!, the actual appt- included vitals, EKG, quick echo, speaking with his nurse, nurse practitioner, then the dr. WHEW!! Everything looking good. He is up to 8lbs 2.5oz!! His breathing is starting to get a little more labored (breathing quickly, using his belly to breath, using his muscles bettwen his ribs, ect) especially with feedings, diaper changes, honestly any real stimuli. Dr. Weller has started him on a low dose of lasix, to help decrease to workload on his heart- hoping to buy us more time for his lungs to mature, so he can get a little bigger before surgery. I feel he looks good, but this has always been "Ethan's normal", but it's not normal- I know this... He still really can't say when his surgery will be. He feels more than likely closer to 4 months rather than 6 months.

On a good note, I'm amazed at what all of this has done for myself and our family. Everything we have been through has brought some pretty amazing people into our life. I've met a couple other mom's in the past couple weeks, who have had little ones in the last 3-4 months who are on the same journey as Ethan. It wonderful to share stories and experiences. I got to me another mom today at Children's. Her name is Allison, and her little girl's name is Adalyn. She has open heart surgery the same week we were discharged from the hospital. It sounds as thought her surgery was far more complex when compared to Ethan, but she is doing great and hope to be home soon!

I think I'm hanging in there fairly well. Exhausted... yes, but who wouldn't be- Eli is exhausting lol!! The meals or gift cards that friends and family are bringing over for us are a HUGE help. It's days like today when it's certainly helpful.

1st Visit from Children's Homecare

Yay!!!!!!!! Ethan is up to 8lbs. He has gained 7oz since delivery and 3 oz in just 6 days. I'm one happy mommy. I've always known it was best to get him home where he belongs! He has mostly good days with feeding. It's still a working progress. He is so precious. I just love him to pieces. Eli isoloing so well with him. He is an extremely big helper. Everytime Ethan starts fussing Eli runs to check on him and says "Mommy he wants you (again)!!!"


Just a quick post from now. I hope to find the time to post pics... And figure out how to do it from my phone.

Happy Labor Day!

Not a great post, but it's an update to say we are still here and doing ok!! Transitioning home has went fairly well, but I certainly feel a bit overwhelmed/exhausted... I haven't touched a bill in over 2 weeks (why start now lol!), tripping over hospital bags in Ethan's room, laundry was to the ceiling (thankfully Matt got that caught up, he's great!!), poor Eli is just STRIVING for our attention- did I mention he starts pre-school next week!?!? Not to mention the obvious- Ethan and his feedings. I feel like this is all we get done all day long :( and Matt goes back to work. I'm not sure I'm ready for this......

Ethan was awake for a good bit of this evening. He is starting to really focus on my face. I almost get a little smile out of him. Both of my boys just melt my heart. There is nothing I love more.

Hoping to get pictures on here tomorrow!!

 

Meal Train

I've had a lot of people asking if there is anything we need or what they can do for us. It was suggested that I set up a meal train to help us out while trying to adjust to the busy life we now have getting Ethan to and from children's for doctor appointments. Please don't feel obligated. 

We do have to obey a few doctors orders. Unfortunately we cannot have visitors during this time before Ethan is waiting for his open heart surgery. We cannot risk him getting sick. If you or anyone in your family has had a cold, virus, or fever in the last 48hours. Please do not come to our home. If it's a time when you are scheduled to bring food. Please call me or email me to reschedule.

Ok! I thank you in advance :) Questions please let me know.

Acess to the schedulehttp://www.TakeThemAMeal.com
Recipient Last Name: Wolfe   

Password: 4969

Such a great sleeper...

You always want a baby that will sleep through the night, not cry, just a really mellow baby. Well we have ourselves one. Well for now anyways. He eats better during the day, he is showing hunger cues. At night we have to wake him up every every 4 hours. He is sleepy all the time, not by choice. Once his heart is repaired (which will be somewhere between 3-6 months of age). Our pediatrician described it perfectly to us yesterday. When Ethan eats its like running on a treadmill. He burns extra calories and gets so extremely tired. After his surgery the eating and sleepiness will improve. Ethan certainly has an appetite that's for sure! He does excellent with feedings, he is just so pokey especially at night. The night feedings are worse, it usually takes about an hour to feed him, so then in 2-3 hours we're doing it all over again! He cluster feeds in the am so that's not been a huge issue. I think he is making up for the not so great night feeds. He shows hunger cues during the day, not so much at night. I believe he is learning.

Thankfully since we were discharged on Thursday, we have a long weekend before Matt has to go back to work on Tuesday. It's going to be interesting for sure! I can manage the both if them, its just the L O N G feedings. Thankfully ethsn diednt seem to mind Eli bouncing off the walls! I actually think its much quieter her rather than the NICU- the crying babies, monitor alarms going off, ventilators alarming, IV's beeping. I actually recorded a 5 minute time there for a 'just in case' situation! I hope I never have to use it. It brings tears to my eyes just thinking about all that.....had been doing very well but he is certainly striving for our attention. Hitting and punching. Right now he is gentle with Ethan... We have to worry more about our dog Libby (she is a 9 year old English Bulldog), she is very sneaky. She hasn't left his side since we have been home. At the moment my back is turned she gets up and sneaks a kiss, usually on his feet and them sometimes right across the face!!!