14 days at Children's Hospital

Ethan has been at Children's for 2 weeks. His congestion and cold symptoms are starting to subside. But his heart is working so hard that he is in heart failure. They are managing those symptoms with lots of medications. He has lost interest in eating and they tell me it's all apart of his heart condition. He is getting so tired most of the time. When he is awake is is so happy, talks and tells lots of stories, he is very active. The nurses say they're going to get him a trampoline!

We are taking his all one day at a time but he is only going to get worse and he needs to have surgery. But he needs to get over this cold. It sounds like he is just going to be in the hospital until its time for surgery. He is still on a little bit of oxygen and requiring the NG for tube feedings. He is also of breathing treatment and require suctioning around the clock. When he gets upset which is rare, his oxygen levels drop extremely low. He gets wore out with just sponging him off during a bath, actually just during 10 minutes of just trying to get him to take a bottle :(

I don't think anyone could have prepared me for how mentally exhausted I feel.  I pray to God and I pray everyday to take these struggles away from Ethan. I know he is looking out for us because I feel his presence and the power of prayer from everyone! He is such a lucky boy to be loved by so many!

We are so blessed!

Team Ethan Benefit was a SUCCESS!

Yep that is right! Team Ethan's benefit was a success last night. We could not be any happier. We had such an amazing turnout. This has taken a huge weight off Matthew and I shoulders. We are so blessed to have all of you in our life. So thankful for all the love and support for baby Ethan. Everyone has been praying for us. It was so comforting to hear other moms talking to their little ones and hearing their prayers for Ethan!

A HUGE THANK YOU to Dalene Campbell for putting this all together for us in just a couple weeks. Thank you to her Pastor for allowing her to have the benefit in their church. I wish I could individually thank each and everyone of you who helped with donations, raffle, volunteering, and praying for our family!!!

We had 135 guests attend the benefit!!! After today our grand total was over $5,000!!! Such a blessing to know all the family and friends we have rooting for our little man. God is SO good!

Thank you all so much from the bottom of our heart :)

Update from Children's

Ethan has been at children's for 8 days now. We have certainly had our share of ups and downs. He is truly doing so much better. Cooing, smiling, and playing with everyone that walks in the door. This cold is just down right nasty!!!!!! After 5 days of IV steroids and every 4 hour breathing treatments, I finally think he out of the clear going to the ICU. He is still getting breathing treatments around the clock every 4 hours and suctioning.

Now another issue exits, his oxygen levels are dropping to the 50's when he goes to sleep. A new physician is on this week. She was ok with his oxygen levels in the 60's "because most heart babies are lower 75-85% when they're awake, so 60's is acceptable." I waited a few seconds... NOPE I'm not ok with that!!!! Ethan's oxygen levels baseline are 85-95%. Why would it be ok all of a sudden sick or not for him to hang out in the 60's?! I want to know WHY he is dropping that low. After 4 weeks in and out of the hospital. I know my son's numbers. Sleep apnea? Doesn't appear that way to me. They are consulting an ENT to evaluate. Down syndrome babies have low muscle tone, they wonder if he is obstructing his airway. I personally think it's this virus running it's course. They are also repeating an echo of his heart to see if he has worsening heart failure. He has been showing signs of heart failure since he was 3 weeks old. They change his meds a bit, it gets better, change them again, gets a little better.


All and all Ethan needs to have the AV canal repaired like now!! But they have to wait until he is better, now it's another 4-6wks, so January!  Nothing like fighting off all bugs in the middle of winter?!?!

So the plan now is to get this figured out and have him out of here by Friday!!!  So blessed to have such great care by the nurses here. I've gotten to know all of them and they are now our family!

Benefit for Team Ethan!!

A wonderful friend and co-worker, Dalene Campbell asked us if she could have a Spaghetti Dinner Benefit for Ethan. I never imagined in a million years we would be in this situation, but with everything that is going on with Ethan I cannot work right now. Here is the information from Dalene. Her number is 740-808-0348, email ddikcampbell@gmail.com

Spaghetti Benefit for Ethan
When: Friday December 7th
Time: 5:30pm-8:00pm
Where: Victory Hill Church
4000 Coonpath Rd.
Carroll, Ohio 43112

Spaghetti dinner $5 per person. There will be a Chinese Auction as well- right now they have 2 16" kids bikes, one boy and one girl bike, gift card tree with $150 worth of gift cards!!! All donations appreciated. Please get in touch with me ASAP for volunteering or donations. If you have any questions please contact Dalene.

Thank you,
Dalene Campbell

I know Dalene has gotten a few stores to donate some things for the dinner. If you or if you know anyone that could donate or volunteer for this event we would appreciate it!!!

God, Please give me strength!

I've finally have a moment to send an update. I started this on the day Ethan was admitted back to Children's on Tuesday. What's crazy is that Ethan never showed signs of the rhinovirus last admission 3 weeks ago even though he was positive for it. He never had a cough or congestion. We followed up with our cardiologist 10 days after we were discharged and he was starting to have some nasal congestion but his oxygen levels we fine and lungs were clear....

(from Tuesday) Over the last week he developed a cough and some congestion. Sunday was terrible. I even questioned his color, but his color is always not so great :( over the course of the last 24 hours, he was coughing up so much phlegm that is seemed like he was drowning himself in it. He was choking on his own secretions. Once again I was packed and ready to take him at 3am. Of course he cleared up and fell asleep. So I called our pediatrician first thing and got him right in. I wasn't crazy, his oxygen level was 72%. Ethan is normally in the mid 80's, mostly 90-92%. He was pink and not in any respiratory distress, some faint wheezes. They rechecked it on both hands and feet, still 72-76%.  So he thought it would be best to have the children's ER dr take a look.

So we drove on up. As I tote him down the hallway bags and all, he starts grunting and making these terrible noises (no nurse, let alone a mother wants to hear!!) The waiting room is slammed, seriously 40 or more people. I'm thinking to myself, you better bet I'm telling them we cannot possibly sit out here and wait. I tell them who we are, a nurse comes around the corner, takes one look at him, scoops him up and says "come with me, he needs to go back now". The rest is pretty much a blur. His oxygen levels were in the 40's by this point, the room was filled with everyone doing their best to help Ethan. I seriously thought he was going to code right there before my eyes. They were giving him breathing treatments and suctioning tons of secretions out of his lungs. What seemed like an eternity, lasted about 10 minutes. I was numb... How on earth did I not see how sick my baby was? He actually pulled through only requiring a few breathing treatments and some oxygen. His chest X-ray showed a few different things, he has possible pneumonia and /or increased pulmonary vascularities (blood backing up from his heart since it can't pump the blood out as well). His symptoms maybe be from the virus or he might have another virus going on. We will know more about that tomorrow...

I'm the meantime, we are back on the cardiac step down unit on the 4th floor. Due to flu/viral season. There are no visitors. His oxygen levels do keep dropping and he's pretty congested. The breathing treatments and suctioning help but it's a temporary fix for an hour or two. It's going to be a long night. They have already said they might need to transfer him over to the cardiac ICU. So we wait and see...

(Fast forward to today...)
He had another episode today with his oxygen levels dropping, congested, wheezing. Only this time his oxygen levels did not go up with a breathing treatment or suctioning, he stayed a dusky ugly color. The nurse and residents decided they needed the ICU team to come look at him since he was working so hard to breathe. Times like this I am very thankful I have the experience I do. It can be quite scary, maybe I'm in a little state of shock. There was about 25 people, including extra nurses, drs, ect. They decide on a quick plan for the best possible outcome to avoid going to the ICU. So they started him on oxygen, increased breathing treatments, started steroids. He is doing ok at the moment. They are hoping this is the peak of everything and won't get any worse. Not sure how long this will last... hopefully not long. He is getting excellent care, I don't even have to blink and someone is always right here checking in on him.

Will certainly send updates! Thank you all for your love and support through this...

Fundraiser for Ethan- Win a Family Photo Session!!

A very good friend of mine, Angela Young has offered to set up a fundraiser for Ethan. I have known Angela for 12 years, we met at Berger Hospital working in the ER. I was just a senior in high school. We have took different paths in our nursing career, but have always stayed in touch. She has been doing our family photography pictures since I was pregnant with Eli.

She wanted to do something to help our family out, but help another family as well!!! Here is a link to her blog where you can enter a chance to win a FREE photo session for your family. She will be raffling TWO FAMILY SESSIONS!!! Everything will be done ONLINE through her blog :) One entry is $5, enter as many as you would like. The drawing will be held on December 9th at noon.

Please share the link with your family and friends and keep the link going :)

I just want to thank you Angela for setting this up for us. We are so blessed to have you in our life!

CLICK HERE to ENTER the PHOTO SESSION raffle with ANGELA YOUNG

We are HOME!!

Well, we have BEEN home ;)

WOW, it's been awhile since my last post. Ethan got discharged home on Tuesday from Children's. He was sent home with the NG tube (nasogastric tube aka feeding tube). We are feeding him a bottle and what he doesn't take by mouth we give the rest down his NG tube. He eats better in the evening, sometimes will finish an entire bottle. We have to feed him every 3 hours around the clock. So if he is sleeping then he gets woke up, except at night... If he is sleeping, leave the sleeping baby SLEEP!! I just tube feed him then. Most of this is due to he gets so tired from eating and burns up all these calories- hence the minimal weight gain prior to this admission. As of Thursday he was up 1lb 4oz!! Weighing in at 9lbs 10oz!! We see the cardiologist on Friday. Anxious to see if he is 10lbs by then. He most certainly should be!! Everyone is adjusting well. We are finally getting back into a routine. Eli is doing very well and I don't know how I got so lucky to have him as such a big helper. He has certainly grown up on me. So the plan for surgery is a waiting game, it can go one of two ways... He has to be retested for the viral screen (RSV, influenza- flu, parainfluenza- croup, rhinovirus- common cold ** rhino is what he tested positive for this past admission** these are just to name a few) he has to test negative UNLESS his cardiologist doesn't think he can wait anymore like his respiratory status gets worse, starts losing weight again, ect. The reason to wait if he tests positive for any of these tests is to decrease major complications after his surgery like extended ventilator time (breathing tube/machine), pneumonia or other respiratory infections. YUCK!! And of course we are approaching WINTER, FLU, COLDS UUUGGGGGHHHHHHHHHHH.

Ethan is feeling much better. I wish I could get his HUGE smile for you to see. It's perfect. He melts my heart!!! Of course he stops as soon as I take a picture, it's like a game. He wants to laugh so hard because I tell him he is doing it on purpose!! I also have this absolutely amazing video of Ethan making noises, but it's after I do so it's even cooler like we are having our own little conversation. Don't laugh I sound ridiculous, but it's a home video ;)

Oh darn it!! I can't get it to upload. Well here is a picture from today. Poor guy still doesn't feel the greatest...

 

Update from Children's

Ethan was admitted to  Children's Hospital on Tuesday evening after he wasn't eating, extremely tired, difficult to arouse, and rapid breathing.

We were at the cardiologists office on Monday and he had a 4oz weight loss in 9 days. They started having us add a different type of formula to the breast milk and would followup in a couple days. Well I just did not feel comfortable with how he was doing on Tuesday so I made the cal to his cardiologist and they admitted him to Children's.

Everyone in our house has been sick with this nasty cold. I thought Ethan and I were out of the clear, then it hit me like a ton of bricks nearly a week ago. They did a viral screen and it came back positive for the rhinovirus aka "common cold". They're saying Ethan has suffered a hit from both sides, his heart is getting so weak that he needs surgery soon and the cold has unfortunately set us back for the surgery. It's everything we have tried to do to prevent him from getting sick, staying housebound and limiting visitors... I'm just thankful he did not test positive for RSV, that would definitely postpone surgery for 6 weeks. They were supposed to present his case to the surgical teams today, but since he is sick this is on hold...

They have made multiple adjustments to his medications for his heart. He is now on lasix 4 times a days (to decrease fluid around his heart and lungs), digoxin still twice a day (decrease  workload on the heart), added enalapril twice a day (decrease workload on the heart, and zantac twice a day (to prevent reflux).

He does have a temporary feeding tube into his nose. We offer him a bottle and what he doesn't take we give the rest down his tube. He has been eating more, has finished a couple bottles. He still is so fatigued and that is related to his heart and I'm sure from not feeling well. They are planning of having Matt and I do the feedings, put down the tube, and care of feeding tube this weekend so hopefully we can take  him home early next week.

I'm so excited Eli is coming up this evening. I cannot wait to see him!!!!! I have been staying at the Ronald McDonald house across the street, so they will get to stay with me this weekend. Also I am asking if you can collect the "pop tabs" off the cans, the Ronald McDonald house takes these for donations. The money is used to pay for electric, gas, water, food, ect. Please contact me if you're interested!!!

He seems to be tolerating all of this. He is doing nearly 100% better in my eyes since we were admitted. He sleeps a lot of the morning and afternoon, but he sure get a party going on in here in the evenings. The nurse was telling me last night they had to draw who got Ethan because they all wanted him. Makes me feel so good that when I'm not here he is loved and well taken care of.

Thank you all so much for your continued support, thoughts, and prayers! We love you all :)

Cardiology Visit

Today has been very busy!!! I had the privledge to hang out with my little buddy on his 1st field trip to Noll's Farm outside of Somerset. It was a beautiful day for it, but it was very windy up on that hill, thankfully the rain held out while we were there! They had a corn maze, tractor hay ride, play area, he learned about pumpkins and gourds, and picked his own little pumpkin from the pumpkin patch. It was a lot of fun and I'm so thankful everything worked out so I could tag along!

Preschool class

Eli

 

 

 

We saw Dr. Weller at Childrens today also. He was pleased with how well Ethan has been doing. Everything with his breathing, decreased appetite, and sleepiness is all related to the heart issue. He is keeping lasix as ordered and adding digoxin- a medication used to increase the strength and decrease the workload of the heart. I was very pleased with this visit, no admission!!! They are just trying to buy some more time to get his weight up and stronger for surgery. If at any point he gets worse they will just have to do it. He is up to 9lbs. His vitals and lung sounds checked out well. His echocardiogram of his heart is unchanged from delivery. He had to get bloodwork, but that was nothing compared to all the shots he got on Wednesday for his 2 mos checkup!!!! We have a follow up checkup on October 29th and we will see how things are going!!

Quick Update

Happy 2 months to our baby boy!

We saw our pediatrician today and she felt Ethan is starting to go into heart failure. They have moved up his cardiology visit to this Friday. His lasix was increased to twice a day. He is gaining weight but not a lot. He is up to 8lbs 15oz and 22 in. He is starting to worked harder to breath while he is eating or other small activities. His liver is enlarged which is a sign his heart not pumping efficiently. This is a change from his visit 3 wks ago. He is not 'acutely' sick but she wants his cardiologist to see him. She anticipates we will be referred to the cardio thoracic surgeon for evaluation for surgery soon.

I just feel so numb... My heart is so heavy... My mind and body feel listless... This is completely out of my hands and it is in Gods hands. Speaking from someone who likes to maintain a sense of control!!! I knew this was going to happen but it's just crazy how 'Normal' for him I've gotten used to. I have noticed changes in his breathing with activity. He is very peaceful when he is just resting, but that is not ideal.

He got all of his immunization a except projectile vomited the Rotateq. He screamed bloody murder for 15 minutes after the 3 shots. For those that have seen or heard us talk about Ethan.. He does not cry. I still have tears hearing that little cry come out of my baby boy!!!

So please, say a prayer for us on Friday. I know you already have us in your blessing. We love you all!

OMG, It's Been Awhile!

Oh, how I have neglected my blog! I had no idea the amount of people that actually read this. My blog has had over 500 page views in the last 3 weeks!! I had to take a break from everything!

So, it's been about 3 weeks since I last posted about my little man! He had lost some weight (down to 7lbs 14.5oz). About 3 weeks ago we added 1 tsp of formula per bottle to increase calories and weekly weight checks with our pediatrician. Well, he did not tolerate formula!! Within an hour he starting 'spitting up' which was a little unusual because he had not been doing this. By the next feed he was projectile vomiting and got a nasty diaper rash... Allergy vs intolerance?- did not care was not giving him anymore, the oncall peds dr agreed. Within 24 hours he was back to his happy self and eating so much better than ever before.

We also changed bottles. Our friend Jessica brought us these tiny bottles when Ethan was in the NICU. They have smaller nipples for his smaller mouth struture. They are made from Gerber, First Essentials with latex nipples. We had been using Playtex dropins- that's all I ever used with Eli. He could not get latched with these bottles, made a huge mess, and sucked tons of air!!! The Gerber bottles are no longer sold on the stores (Walmart has the silicone nipples or the fast flow latex nipples). I ordered the Gerber bottles shown below from amazon, 6 bottles for $10.00- this INCLUDED SHIPPING!?!?! These bottles have made a HUGE difference. Our last weigh in 3 weeks ago....... he was up to 8lbs 5oz!!!!

 

      The Gerber 1st essentials on the LEFT                                                         Playtex Nurser on the RIGHT

 

We go back to our peds dr next Wednesday for his 2 month follow up. Our next cardio appt is October 26th. He has been doing SO WELL!!! He eats 3-4oz usually over 30 min, sometimes a little longer. He is awake for longer periods but still sleeps quite a bit, but that's all related to the heart issue. Once his little heart is repaired, he will be a whole new little baby boy!

It's been so nice to have a break in between appointments. This is awful, but this is the 1st time I have gotten to enjoy my family and my newborn son since he has been born. Right now THIS is normal. I love waking up every morning to my 2 beautiful baby boys. They shine so much light. Everything I have been through and continue to adventure only makes me a stronger person. We don't chose the cards we are dealt. Ethan was born with Down syndrome, but that's not who he is going to be. He will learn to smile, sit, crawl, and walk just like everyone else.. It will just be on his time. I know he certainly has a fan club that will cheer him through on! So enjoy some picture below :) I also threw in some of Eli's 1st dentist appointment, LOVE the fact he likes going to the dentist... for now!!!

 

 

 

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!!!

Welcome Home Ethan Matthew!

HAPPY 2 WEEKS BABY BOY!!

We finally united our family as one within our own home last evening. Thank you for all your thoughts and prayers. We certainly could not have made it this far without all of your support. The power of prayer is magical. I'm also blessed for the family and friends that this blog has  brought together. Thank you for following us on our journey. Ethan is my Tough Little Boy!

We planned to keep a small secret from Eli... that Ethan was coming home. Matt's parents picked him up and brought him home. Eli came running through the door expecting to see daddy. I had been staying the previous 2 nights at Children's so I had not seen him for awhile. We snuggled for a few and then he ran off to see his daddy! When he turned around Ethan was sitting in his car seat and Eli's had a grin from ear to ear. He was SO EXCITED, he said "I'm so happy 'Efan' is home". It was so precious. Hopefully I will get our pictures on here soon!

Today we had to go to our pediatrician's office for his checkup (no waiting around!). We switched our pediatrician to Pediatric Associates of Pickerington. They are affiliated with Children's, which was very important to me when deciding on who would be caring for Ethan. I met Dr. Julie Dunlea during a prenatal visit. She is wonderful. I feel like we have a conversation based on friendship, not a dr visit. Down Syndrome kiddo's are have their own developmental scale such as for growth charts, milestones, what testing is done at specific appointments, ect. So Ethan is 7lbs 13oz, 21in. He is in the 80th percentile for height and 90th percentile for weight. She was so pleased with his weight. It was very comforting to hear those words, "Whatever you're doing, keep doing it. Ethan looks wonderful." This is a mere 180, from nearly 12 days ago when we were rushed to Children's main campus to the NICU...

Between nurse home visits, dr visits, and Eli starting preschool 3 days a week- it's going to be a little crazy!?!? I'm sure we will get it figured out, we have done well so far :)

We might get to go home tomorrow!!!

It was amazing to hear those words come out of our doctors mouth. Ethan and I proved we were ready to start this journey as a family! Poor Eli has started to become very emotionally upset, so it's time to get our baby home!!! I knew he had a great night! That's because his mommy knows best :)so we see that he maintains everything and it looks like we will be getting our ticket out of here! Just a quick post for now. Everyone keep your fingers and toes crossed. We will know officially by noon tomorrow!

Welcome to Holland by Emily Perl Kingsley

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Almost Home!

It's at my finger tips! I can almost see it! Yep, I'm pretty sure we are almost home!!! I discussed my plan with the practitioners today about how eager I am to stay with Ethan to see how he does over night with me exclusively breastfeeding. He breastfeeds all day long just fine when I'm here. She thought it was a fantastic idea so our "SINK OR SWIM" trial started at noon. He has breastfed awesome all day with lots of pee and poop! She ordered no weight checks until tomorrow, they took out his NG, we are camped out in a room with walls and a real door that shuts! I have a bed, bathroom, and TV! They basically moved Ethan and his room to this new one. I really hope we get to stay here for the remainder of his stay. Its so nice to have a break from ventilator alarms, monitors alarms, I've beeping, babies crying... Did I mention there were 100 beds in the NICU. It's crazy when you're on the patient side of things. It is SO peaceful. I can't hear a single thing other than Ethan's little baby noises. so the plan will be to see where he is at tomorrow. I'm sure everything will be fine because he has had plenty of wet diapers. Then I do another 2 nights. Hopefully home by the weekend!!! That would be amazing.

I just don't know how much longer I can take leaving either one of my babies. I want to be here with Ethan, but home with Eli. Matt brought Eli up tonight. He helped me change a diaper for the 1st time. He was more concerned what color he pooped!?!? He is such a big helper. His little mind is so confused. I walked them outside, fighting back every tear. He wouldn't give me hugs and kisses. So I was about to shut the door and he started to cry. A very emotional cry. I asked if he was ok and he say, "NO MOMMY I JUST WANT YOU"... Yep I lost it and them he reached out to me for the biggest hug. Breaks my heart!!! But this is what I have to do for all of us.

I just want to take my baby home! So please pray for us!!!

Patience

I'm a day behind.. this was from yesterday 8-27-12. 

I'm having my moments for sure. I just feel like we are so close every night that I leave. I had a melt down tonight because we had talked in rounds today I was going to start feeding him on demand and get him off a 'schedule'. They were also supposed to stop supplementing basically see how he did over 24 hrs. If I felt he needed supplemented then we would. Well none of this was ordered.

 I had a small anxiety attack when the evening nurse came in with a bottle of milk. I was also told we aware only doing a couple pre and post breast feeding weights just to make sure he was at least eating some. the nurse too it upon herself to weigh him when I wasn't there. My whole thought is how is he going to demand feed is you're filling him up all day. He nurses fine now. It just takes awhile... A very long time actually. But he is learning and I'm willing to have as much patience with him while he learns. This is something I have kit always had, but with I have learned to adjust this with Eli. 

As long as he feeds well today I'm staying the night in a parent room on the unit, see how 24hrs go than if ok I will be there another 48... He will be in the room with me. I will so all of his care. This is the closest thing to home. This is what I have to do to get him home!!! He will still be hooked up to the monitor. He feeds so well for me during the day. As his mother I feel switching him from breast to bottle is confusing him even more. He just will not take a bottle very well and he will not take one for them at night, so since we will I will be Exclusively breastfeeding at home this is what we need to do!

Baby Steps...

What an overwhelming sense of love and support! Thank all so much for your kind words. Ethan certainly has a fan club! We need the support more than ever. I'm so glad everyone has been so understanding we are so thankful for all our family and friends!

We take 2 steps forward and maybe 1 back.. He is really learning how to coordinate to eat, but it's the night feedings continue to be an issue. He doesn't always take all the bottle. Most people would be like, so he isn't hungry. I wish it were that easy. He is very sleepy, he would sleep the entire day if no one stimulated him. This is due to his heart defect. He just gets tired so easily. So we do eye and mouth care, change his diaper to wake him, then he is too tired to eat. We try to feed him first, then he just sleeps. Its a never ending battle.

Matt stayed home today to give Eli some direct attention. Poor guy doesn't know what to think. I believe he is taking everything very well, but he doesn't know any better. "Ethan has been getting some extra rest before he comes home, so the nurses at staking extra special care of him..." This is what I told Eli last night, then of course he fires back... "Well mommy, then he needs to come home so you can take care of him, you're his nurse and I can be your big helper..." Exactly!

So I'm completely exhausted!!! I can only hope for baby steps at this point. Tomorrow us going to be a busy day. We will see all his practitioners and ancillary staff. Matt is going back to work this week, so he can take time off for when Ethan's comes home!

HAPPY 1 WEEK BIRTHDAY TO YOU ETHAN MATTHEW!

This was a picture from yesterday. Little guy decided to pull out his NG tube (feeding tube), so I snapped a picture :) It was nice to see him with no tubes and no tape all over his face. He looks just like Eli here. If this is your 1st visit, I'm going to redirect you to my 1st post...
This is our journey, my thoughts and feelings, and our new miracle.

What The Future Holds
 

If this is the 1st time reading my blog. I welcome you! it has taken me quite some time to get to this point. I feel an abundance of relief since Ethan has been born. It has been a very rough road for me emotionally, mentally, and physically the last few months. I know it will continue to be a rough road, but I have wonderful family and friends that will help us through this. I wish I had accepted what was going on more when I was pregnant. I regret my feelings of crying my eyes out for nearly 15 weeks after confirmation of his diagnosis and heart condition, every single morning in the shower and laying in bed all hours of the night- wondering why we were chosen, why we were the one's who gets to have a broken baby, how on earth will I love him like I do Eli, and not to mention all the endless worries about the future.

Ethan is officially 7 days old at 6:56pm this evening, has it really been a week? He has certainly showed us his effort this week ....went from chaos d/t a possible bowel obstruction which lead to an emergent trip to the NICU at Children's Hospital early Sunday morning, requiring 100% oxygen d/t low oxygen saturation's, unable to regulate body temperature- dropping as low at 95.0 degrees, not feeding, not peeing, or pooping..... TO...... doing a 180 on everything. The only major concern they have at the present time is the feeding, he needs to meet the intake based on his weight and since he is a BIG BOY has actually gained a few ounces instead of losing during the typical 1st week after birth.

On a positive note, he is getting the hang of breastfeeding, which is always a concern with these kiddos and their mouth structure- tongue mouth coordination, low muscle tone, ect. I had determination this was one thing we will master. I have to remind myself to have patience and be persistent. Everyday is better and better. Thankfully my supply is not an issue, so he will only receive the breast milk. I have amazing support here from the lactation team to help the both of us. I am here for at least 3-4 feedings, so we have time to work together. When I'm not here he is offered a bottle of my milk and this morning was the 1st time he took the entire amount needed, which is yet another HUGE milestone. It's amazing what I took for granted with Eli, I couldn't wait for his 1st smile, 1st coo, rolling over, sitting, crawling, walking, ect. With Ethan I have literally cried the 1st time he latched onto me and learned to suck, swallow, and breathe. It's the super tiny small things for Ethan, things that I had feared would never happening right before my eyes.

So, we were curious... What's the plan, when can little mister get out of here. The answer is, he is in control and it's up to him. Realistically he will need to eat by mouth, whether it be bottle or breastfeeding for 24 hours, nothing supplemented down his NG tube (feeding tube). Once we get to this point, he will need to maintain this stride for an additional 48 hours. So it could be some time before he gets to come home with us.... I know he is in the absolute best place right now, but I just want him home more than anything in the world. It's so difficult to want to be there with Ethan and here with Eli or vice versa.

Now his heart defect is not an issue at this present time. Once he has learned to adapt to his environment, he is doing very well from what his practitioners are telling me. He will chronically have lower oxygen levels, he has a murmur, he gets tired easily, so that's another reason keeping here longer d/t feeding. His open heart surgery will still be at the 4-6 month mark, maybe closer to 4 months depending on how he does over the next couple months.

Our family has been wonderful. If it weren't for the Babycenter group I belong to I'm not sure if I could have made it as well as I did. I woke up everyday and just put one step in front of the other. I had to. I have a family that needs me. Work that counted on me. Patients that needed me. I'm especially thankful for the wonderful group of doctors I work for and girls that I work with every single day. They were there for me when I was near rock bottom on the day I got that phone call and they have been beside me ever since. I could go on and on. This is why I felt the need to share... Our story

Links:

For Friends and Family

Congenital Heart Defect- AVSD

BLOOM One Mom's Struggle

Day #5 in NICU

So, today is day #5... I'm starting to feel the emotions now of not having our baby home with us. I have butterflies every morning getting ready and the drive to Children's to see him, following the turns and curves of the never ending hallways, the elevator ride to the 4th floor, the long hallway back to the NICU, the wash station, and then the final walk towards his bed to see my bundle of joy wrapper smug as a bug....

and then at night I have to peel away my fingertips one by one sobbing my heart out because he isn't coming home with me. It's been a rough few days for me.

Little guy was asleep when we got there that's what he does best!! They were able to wean off his oxygen. Decreasing his IV fluids as they increase his feedings. He is still unable to control his body temperature but that will just take time. His  IV went bad so they took that out so we can start to get him dressed in nice fuzzy warm sleepers!

BIG BROTHER Eli came to visit. He is so precious with Ethan. My heart melts everytime they are together. So the attn span that Eli has is about 3 minutes! We were introduced to the 'siblings clubhouae'. It's a wonderful place to take siblings where they have volunteers that will play with the kiddo's. They may go twice a day for an hour and half at a time. They have a puppet show, they can paint or color, lots of toys, and games. Needless to say I'm so thankful they have that for Eli so everyone is happy in the end!

I did have a slightly minor problem with a nurse today. So his orders for feedings are pretty straight forward. If he breastfeeds for 10 minutes then no need to supplement, if not then her gets the remainder either bottlefed or down his NG. So little guy will not take a bottle we have tried 10 different ones. But I have gotten him to latch successfully, just wears him out so easily. This is going to be what keeps us there the longest. No plans for discharge at all at this point. The issues with the bottles are probably due to the shape of  his mouth and to learn the right sucking technique... Which I know he can do because he nurses well when he is awake.