Congenital Heart Walk

As many of you know, on January 29, 2013, Jackson, was diagnosed with a congenital heart defect (Transposition of the Great Arteries). That was months ago and despite some very challenging times, he is doing great! To recognize this important time in our lives, we have started Jack's Pack to benefit the Congenital Heart Walk. I would like to ask for your support by either joining the team or sending in your tax-deductible donation today! 

The Congenital Heart Walk is Saturday, September 21, 2013 at Eden Park at 10:00 am. Please feel free to come and walk for Jackson and for others with congenital heart defects. 

We'll even have fun "Jack's Pack" shirts :)

Here are just some of the facts: Nearly two million children and adults are living with a congenital heart defect (CHD) in the United States. Each year approximately 40,000 babies are born with a CHD, making it the country’s #1 birth defect. At least 10% of all congenital heart defects are first found in adulthood. Thanks to increases in survival rates, the number of adults living with a CHD rises by 5% a year and adults with CHDs are living longer, fuller lives than ever before.  Your support will continue our progress.

The Congenital Heart Walk is an exciting joint effort between the Adult Congenital Heart Association (ACHA) and the Children’s Heart Foundation (CHF)! This effort will raise funds to help both organizations continue their missions to address the needs of both the newly diagnosed and long-term survivors of congenital heart defects, in a truly inspirational day of sharing, caring and fun. 

As you know, fighting congenital heart defects for our family is personal. Please support our efforts by joining Jack's Pack for the walk on September 21, making a donation, or BOTH! 

Jackson after his open heart surgery to fix the congenital heart defect. 

Jackson today, thanks to advances in technology. These advances in technology allowed Jackson to be diagnosed in utero, which saved his life. 

Thank you for all your support! 

Love,

Ted, Amanda, Lucy, & Jackson Schwieterman

5 months!

Jackson turned 5 months old today! I can't believe how fast 5 months has gone! He had his 4 month check-up last week and weighed in at 19.5 pounds. He is quickly pushing out of his 9 month clothing and into 12 month clothing. Ted and I looked back at Lucy's info from when she was an infant. He is 3.5 pounds bigger than Lucy was at his age. 

A lot has happened since the last post. He had an appointment with the Neurodevelopmental Clinic. At this 4 hour appointment, he saw a plethora of specialities:  cardiologists, developmental pediatricians, nutrition, physical therapy, social work, etc. He came out doing very well. He's right on track for his age group. They said he did have a flat spot on his head, but that's pretty normal since infants spend so much time on their backs. They said it'll round out the more he's on his tummy and upright. 

He had his consultation for his circumcision. The doctor saw us for a total of about 5 minutes. He said Jackson has to get the okay from his cardiologist first, and then we'll schedule it. It's an outpatient procedure. They will put him under for the procedure. As long as cardiology doesn't want him to spend the night, he'll go home that day. I'm hoping we can get it scheduled this month since school starts next month. 

On Thursday, he has his big cardiology appointment. He will get an echocardiogram, an EKG, and see his cardiologist. This will be his first echo since leaving the hospital. I have to say, I'm a little nervous. I know Jackson is doing well, but I'm still nervous. I think there will always be a part of me that will hold my breath when this test comes hoping nothing shows up. 

Jackson has started rolling over. He does things his own way, he has made that perfectly clear. He started rolling from his back to his stomach. Most infants roll from their stomach to their back first. Not Jackson. He rolls from back to stomach and then back again. He has also started sleeping on his side. It looks rather uncomfortable. So we try to straighten him out and put him on his back, and he goes right back to his side. 

We've also been given the green light on starting solids. It's quite bittersweet. I'm anxious to get him started and sad at the same time. He's growing up so fast! 

Jackson made his first big trip to Folly Beach, South Carolina a couple weeks ago. He did awesome during the trip! Both the kids did great! We ended up leaving on a Saturday night at 9pm and arrived at Folly Beach about 7:30 the next morning. Driving through the night is better for kids, but it's torture for the parents. Fortunately, we were able to get some naps in since my mom was there to help. Jackson had such a great time on the beach. He ended up getting sand EVERYWHERE! We had to give him a bath after he was on the beach every single time. He loved the pool. Most of all, he loved being spoiled by his aunt, uncles, cousins, and grandparents. 

Beach Babe!  

Hanging out in the pool with his cousin Addison

Meanwhile in the Schwieterman household, we are preparing to potty train Lucy, preparing to go back to school for me, and to the sitter for Lucy and Jackson. By the time school starts, I will have been off for 6 whole months! Going back to school is not going to be easy!  

Just a reminder that the walk for Congenital Heart Defects is coming up soon! I'm a bit shy of my fundraising goal. Hoping to get some more donations by the time of the walk to at least meet my goal. If you'd like to donate, please feel free to donate to Jack's Pack. If you'd like to join Jack's Pack and walk with us on September 21, please feel free to join. The more the merrier! 

Tyson update: Tyson had his surgery on July 22. It was a successful surgery. He is now home and showing his personality off! Thank you for your prayers for him. Please continue to pray for his recovery. Like Jackson, he has a long road ahead of him. 

Some pictures from the past month...

Hanging out in his jumper

Smiley Jack :)

Ready for his mom's favorite week of the year - shark week! 

Happy Shark Week everyone! 

Cincinnati Children's is an AMAZING place!

Cincinnati Children's Hospital is AMAZING! It really is. I started thinking back today about the journey we have been on with Children's. They have always gone above and beyond for us! From day 1 of finding out he had a congenital heart defect, Children's Hospital has been an incredible place for us. I find it sad that I didn't realize the amazing gem that Cincinnati has until I had to be there. 

The day of the diagnosis, Good Samaritan Hospital contacted Children's and got us right in to confirm the diagnosis and to get a plan in place. The doctor that did the fetal echo spent almost two hours with us. He went out of his way to answer all our questions, alleviate all my fears, and calm scared parents down. That same doctor then called me (after hours) a few days later to answer any questions that came up for us. 

Prior to having Jackson, there was a discussion between my OB doctors and Children's about my delivery location. My OB doctors decided Children's needed to make the call on the location. There was a slim chance that Jackson would need the balloon procedure immediately to save his life. Children's said a slim chance was enough of a chance to change the delivery location. That decision literally saved his life. He would not have made the transport from Good Sam to Children's. And they only deliver major emergency babies at Children's. As a matter of fact, Jackson will be one of about four deliveries they have in the Cath Lab there a year! 

Every single person that would have a role in Jackson's delivery, my care, and his care while at Children's sat in a conference room with Ted and me and explained their role to us. I have never had a panel of people sit with me and explain how they were all there for me and my son. In addition, they had a phone tree for me in case I ended up going into labor on my own! My very own phone tree. They also rehearsed Jackson's delivery and route to the other Cath Lab for the balloon procedure, should he need it. They had dress rehearsals for us! 

Once he was born, the Cardiac Intensive Care Unit went out of their way to make sure we, as parents, were comfortable and were in the know all the time. They consoled this crying momma many times. There were several times that we had a question that we asked. If they couldn't answer it, they sent someone in right away to answer our question. 

My stay couldn't have been more fabulous. I had a private wing all to myself. No one else was in our hallway at all! And I had two wonderful nurses at my beck and call. For those who know me, you know that my vice is Coke Cola. I allow myself one or two a day. One of the nurses went down to the cafeteria and purchased several for me. I realize my insurance was probably billed for my coke addiction, but nonetheless, she wanted to make me comfortable. 

Nurses took pity on me and kept Jackson with them a few nights in a row so I could rest and heal while in the step down unit. They volunteered that. They went out of their way to show me how to do procedures and explain things to me....again....and again...and again...

Jackson has had a few appointments there since being discharged. At each appointment, they never make me feel rushed and answered every single question and concern I have. I'm sure they have other patients that need their attention more than Jackson and his crazy mom, but they never make me feel that way. 

Today, Jackson had a 4 hour appointment there. Since he had heart surgery at a very early age, they will follow him in the Neurodevelopmental Clinic. This is an appointment where Jackson saw several specialities all in one visit. They came in and out of our room like a revolving door. The purpose of this clinic is to be proactive about any delays Jackson may have as a result of his heart condition and surgery. This clinic will follow him every year until he is 18! He saw neurology, cardiology, genetics, physical therapy, social work, nutrition, developmental behavioral pediatrician, and down the road an educational specialist. These groups of people all meet together after they've seen Jackson and discuss the best plan for him. Someone then comes and relays the plan to mom and dad. They schedule all follow up appointments for me. 

The heart center at Children's also has heart camps a few times a year. This is a chance for children who have heart conditions to get together at a camp setting. It's also a place for their parents to get together and get resources to help their children. The congenital heart walk (taking place in September) is through them.

Sure we've had appointments where we've waited hours to see someone, a surgery bumped, and other mishaps along the way. But it has all been in the best interest of their patients. 

I realize you may be reading this and thinking, "this is standard medical care." That may be the case for some of you, but I have never been privilege to this kind of care. I find it incredible! 

I will forever be Children's Hospital's biggest cheerleader!! And did I mention that it's #3 in the country for the third year in a row!! 

Thank you for letting me get on my soapbox and rant for a bit :) 

Summer Fun!

Jackson is 4 months old today. He continues to grow...rapidly if you ask me. As of Wednesday, he was 16 pounds 14 ounces. If you're keeping track, you know that puts him in 9 month clothing. Big boy! 

Jackson has just recently started moving around. He hasn't rolled over yet, but he has figured out how to move around. He puts his feet down and picks his butt up at the same time and scoots around. It caught me off guard the first time I realized he wasn't where I put him. Hilarious to watch. He smiles a lot, coo's, and laughs. He's trying to communicate with us using inflections in his voice. Adorable!

We've had lots of adventures in the last month. We've visited several parks around the area, had weekly library times, plus a few play dates. We took our first solo (without dad) trip to Athens. Ted drove separately to Athens for the weekend, and then left on Sunday to go back to work. While the kids and I stayed for the rest of the week to spend time with my family. 

The journey to Athens was uneventful, which is good. Jackson slept the whole time and Lucy watched Dora, with Ted following behind. 

We swam, played outside, shopped, and relaxed while in Athens. The shopping was quite an adventure. We left the house at 9:30am with me, my mom, Lucy, Jackson, April (my sister), and Addison (my niece). We piled into our van and off we went. After stopping to feed Jackson, eat lunch, and let Lucy play, we finally started shopping (about 1:00 pm). We shopped about 2 hours. Then headed home. We arrived home about 4:30 pm. Yep, gone all day and only shopped about 2 hours. That's life with kids I guess :) 

The trip back to Cincinnati was completely different. Jackson decided he needed to be changed, and fed, and changed again all in our 3 hour trip. As soon as we got on 275 and saw the Cincinnati signs, traffic stopped. For an hour. With a screaming infant and a crying toddler. Did I mention it was stopped FOR AN HOUR?!?! 

Jackson's first fourth of July was spent hanging out at grandma and grandpa's house. We had planned on being in their neighborhood parade. Mother Nature had other plans. We just hung out instead. I'm sure he was very disappointed he didn't get to see fireworks. 

There is a walk coming up September 21 for Congenital Heart Defects. We are planning on walking and even have a team assembled. We are "Jack's Pack". This has become a cause near and dear to my heart. If you'd like to join us for the heart walk, let me know and I'll make sure you are part of Jack's Pack. If you'd like to make a donation to Jack's Pack, please feel free to do that. I've attached links to both of them below. 

Click here for the Congenital Heart Walk

Click here to donate to Jack's Pack. 

A friend's son, Tyson, is going to be having open heart surgery soon to fix his congenital heart defects. Please say a prayer for Tyson. If you'd like to read about Tyson and his big sister, Sydney, check out their blog. 

It's hard to believe where this journey has taken us. And we're only 4 months in. Lots to look forward to. Through the power of technology, social media, and word of mouth, this blog has been read almost 8,000 times!!! That's incredible and amazing to us! Thank you all for helping all of us through this journey. It's been hard at times but what a journey it has been. 

Brother & Sister

Jackson in his bumbo seat (Jackson-I'm sorry that it's pink. It was given to us and I wasn't spending $40 to buy you one that's a manly color. Sorry).

No week-long trip to Athens is complete without a campus tour. Future Bobcat :)

Happy boy, even during tummy time. 

Yay for summer vacation! 

And the Mother of the Year is...

We're getting lots of smiles and coo's these days. I think Ted and I are secretly in a competition with each other as to who can get the most smiles and coo's from him. I'm winning :) I've even gotten a laugh or two a few times. So I'm definitely ahead. I've tried to get it recorded, but every time I pull out my phone he goes quiet. Apparently he hasn't gotten the memo that mom has to record all these little events. 

He's 3 months old today! He continues to do great with his recovery. He weighed in today at 15 pounds 4 ounces. His pediatrician tells us he's in the 75th-90th percentile. I feel like he should be higher than that. I mean he's 3 months old and almost out of 6 month clothing. Hard to believe my little "big" man is growing so fast. 

He's even moved out of the newborn napper part of the pack-n-play and is now in the bottom of it. 

Last Tuesday was the first official day of summer vacation. That means that our fabulous sitter takes her summer vacation too. So Lucy is with me. All. The. Time. Jackson and I are still adjusting to having her with us. I love having summers off, but sometimes it is so hard having both kids. I sound like such a cry-baby. I've contemplated calling Tina to see if she'll take Lucy for a day to two during the week. Just kidding....sort of :) 

So last Tuesday I was taking both kids to Target for the very first time by myself. I loaded them up in the car and off we went. Lucy was adament that she didn't want to ride in the cart. She was a "big girl". So I let her. I made sure she was right beside me the whole time. I stopped to look at something in the baby section and in a split-second she was gone. I yelled for her throughout the section. I pushed the cart back and forth looking for her. I went running up aisles and down aisles while yelling for her. Nothing. Then I saw something move out of the corner of my eye. I ran to the end cap of the aisle and she was sitting in a stroller there smiling and said, "hi mom!" It was the worst 30+ seconds of my life. She was quickly placed in the shopping cart for the remainder of the trip. We promptly found ourselves at the wine aisle. I cried the whole way home. Mother of the Year Award went to me that afternoon. 

Fast forward to bath time that same night, Ted is working late taking pictures. Mama is flying solo with baths. Lucy gets her bath while I put Jackson in the bouncy seat in the bathroom. When we're done in there, I carry him in the bouncy seat (strapped in, of course) into Lucy's room to get her ready for bed. I'm combing Lucy's hair and bouncing Jackson with my foot. Multi-tasking at its finest. We tuck Lucy in bed and I pick up the bouncy seat (with Jackson strapped in) to go back into the living room, and a piece of the bouncy seat comes off. He falls forward in the bouncy seat hitting the floor with the bouncy seat following behind him, because I had strapped him in. I panicked. I just dropped my kid, that just had open heart surgery, on the floor.  Head first. I cried harder than he did. I was able to calm him down and didn't see signs of trauma, bleeding, bumps, or bruising. My mom assured me that I was dropped on the floor as a child too. And I'm fine. Dropping him on the floor sealed my place as Mother of the Year. When I finally laid him down for the night, I gave myself a time out and cried and cried and cried. Alas, my mother was right. Jackson was just fine. He might need therapy later in life but for now he's ok. 

Prior to the "dropping my heart surgery child on the floor" incident, Jackson found himself back at the cardiologist office. He had gotten a little virus and had developed a cough/cold. I called his pediatrician, who said he'd better get checked out since the cough was hanging on. We went in and his doctor assured me that it was just a virus that would run its course. But to be on the safe side, let's get a chest x-ray. His chest x-ray showed "pulmonary overcirculation due to heart condition". His doctor called me and assured me that the x-ray doctor was reading too much into the x-ray, it was a virus. But to be safe, let's go see the cardiologist. Finally, his cardiologist agreed with his pediatrician and that the x-ray doctor read too much into it. He's much better now and over his cough. I'm beyond thrilled that everyone is taking their time to make sure he's ok. They're ordering extra tests, extra office visits. Makes me feel good. Scares me too. Fun Fact #1: children and infants get 10-12 viruses a year! And that's perfectly normal. Wow! Guess we just wait for the next one to arrive :)

Still having napping issues with Jackson. He is sleeping through the night though! That's great news for mom and dad! He seems to love tummy time. He gets really mad when we're in the car and I have to stop at a light or stop sign. He does not like to stop. Keep moving! 

Lucy loves her brother. She wants to give him kisses all the time. We're working on her not smothering him when she gives him kisses. She wants to be right on him. Whenever she sees his scar, she kisses "brother's boo boo". Then smiles and says, "all better." 

We've had several adventures this past month. We've traveled to Athens, went to the zoo, the infamous Target trip, and many others. Trying to keep ourselves busy this summer. If anyone wants playdates, don't hesitate to let me know. We're up for them! In addition to our planned adventures, we've decided to try to sell our condo again. That means that this place has to be kept clean. The words "clean" and "toddler" don't really go together. I guess we'll manage. 

If you, or someone you know, is looking for a lovely 2 bedroom, 2 bath, cathedral ceiling condo with pool and tennis courts, let me know :)

As always, here are some pictures from the past month. 

Lucy loves playing with Jackson's toys, even though she's WAY too big for them! 

Cousins (Jackson, Lucy, and Addie) 

My jogging buddy. 

Addie and Jackson

All smiles for daddy :)

Happy summer! 

Smiles :)

Jackson turned 2 months old yesterday. His whole ordeal feels very surreal. I know it happened. I know we went through it all. But I am still in disbelief that we're on the other side of it now. 

I need to shift my focus from disbelief to being thankful and grateful for the miracle that we have been given in Jackson and his success. He is truly a miracle. Just to think that a simple change in the delivery location literally saved his life. He's our little miracle. And we are eternally thankful and grateful that the delivery location was changed. 

The terms of the study that we're participating in has changed since we're halfway done. The daily weight, oxygen level, and heart rate checks are down to once a week. Every Tuesday I begin recording how much formula he takes in. And on Wednesday's, I weigh him, take his pulse ox, and his heart rate. Last Wednesday (May 1), he weighed in at 12 lbs 15 oz. His pulse ox and heart rate have remained good since coming home!

Thursday he goes back to his pediatrician for a check up and to begin his vaccinations. His vaccines, including the newborn one, were to be held until he was 8 weeks out of surgery. On Thursday, he will be out of surgery for 8 weeks. 

He has started cooing and smiling. Nothing melts our hearts more than smiling at him and having him smile back and coo at us :) His sleeping habits have improved (and hopefully are here to stay). He's going to bed around 9ish and waking up anywhere from 6:30 - 8 am. We are very happy for that. 

Jackson made his debut in Athens a couple of weekends ago. He got lots of cuddles from family that hadn't met him yet. He met one of my most favorite people in the world, my TiTa. She is Jackson's great-grandmother. And she was beyond excited to snuggle him for a little bit. 

We can't thank everyone enough for all the thoughts and prayers we've received. I'm coming to you again asking for more prayers. Some friends of ours are having a baby on Friday. This little boy also has some congenital heart defects that will require open heart surgery for their little one. They are nervous and anxious not knowing exactly what to expect until he arrives. Please say a few prayers for their little boy and for them. 

Have a great week and Happy Mother's Day to all the mommy readers out there :) 

Time flies

It's been a little over a month since we've been home from the hospital. I can't believe how fast this month has gone. They say time flies when you're having fun. That is so very true. 

Things have been progressing quite nicely on the home front these days. Jackson has started sleeping longer stretches at night (which makes mommy and daddy very happy), he's had a "well" check from his pediatrician, and he's was dedicated at church on Sunday. He's doing very well. His lasix is almost gone. As soon as he finishes the bottle, he's off of it! By the end of the week, we'll be able to pick him up under his arms instead of the scooping we've been doing. His sternum will be healed. 

His pediatrician told me that his cardiologist is amazed at how well Jackson is doing. She's read all this through the notes that are sent to her from the cardiologist. We couldn't be more thrilled. She assured me that he is a "normal" baby who should be treated as "normal". I'm just not sure how to treat him like a "normal" baby. He's had open heart surgery!! But we're trying to do just that. The lasix and picking him up are the only two things holding him back from being "normal." 

There's a long running joke in my family. My mom was very sick when she was pregnant with me. She had toxemia. She labored for a whopping 39 hours before I arrived. We both ended up in coma's. The nurses commented to each other that we were both likely going to die. My grandmother overheard the nurses saying this and quickly reprimanded them. We both ended up doing just fine. So the long running joke is that "she almost died having me." It's true, but it has been pointed out to me my whole life. We always laugh about it. 

Jackson's pediatrician said that this would be his long running joke. I will (probably) remind him of the stress of this ordeal his whole life :)

As I was getting ready for his dedication yesterday, I thought back to the day he was born. I was so unbelievably nervous, as all mothers are. There were so many unknowns. We knew so much about his condition, but at the same time we knew so little. The fabulous team of doctors assured us that they would deal with anything he threw at them and that he was in great hands. They couldn't have been more right. I'm still in constant amazement that my little (big) man has been through everything he's been through and he's only 6 weeks old. 

Here are a few pictures from the last few weeks. 

Jackson's Dedication at our church. 

The Schwieterman's 

Lucy loves holding her brother :) 

Thank you all for your prayers. We are so grateful for every single one of them. Please say a prayer for our friends and their soon to be little man. They are about to go through a difficult ordeal. They need your prayers. 

Happy Earth Day!