Knox's Christmas Book Drive

As many of you know we spent the days leading up to Christmas in Nationwide Children's Hospital for Knox's second open heart surgery. We checked in for surgery on December 19th and thanks to our amazing surgeon Dr. Galantowicz we were released on Christmas day.

With it being Knox's first Christmas, I was bummed that we were spending it inside the hospital walls, but the success of his surgery and his recovery was a beautiful Christmas gift. No matter what your child's illness is being in the hospital around the holidays is hard. Nationwide did a wonderful job providing gifts, decorations, and Christmas cheer to those in the hospital. Santa even snuck in while we were sleeping and left Knox a gift.

Not knowing how long we were going to be in the hospital I brought a Christmas tree, our stockings, Christmas jambes, and a few gifts for Knox in case we were in over the holiday. My dad went across the street to the CVS and bought us all hats so that we could start a Christmas tradition. It was a very humbling and intimidate time to be together, and be thankful for our Christmas blessings.

With the holiday season right around the corner, I can't help but think about our time in the hospital, and the families who will be there this year. To honor Knox's successful heart surgery and to do something for Nationwide Children's Hospital, our family would like to invite you to be apart of our Christmas Book Drive. If you would like to participate we ask that you donate a Christmas book or your favorite story to our drive. Families can gather together in the comfort of their hospital room and read a story together to celebrate Christmas and togetherness.

If you are out of town and worried about shipping your book to us, we have made an Amazon Wishlist (click here) with lots of Christmas stories on it. You can shop and the book will be mailed straight to us. You can always go to your local bookstore and purchase your favorite story and get it to us. All the books will receive a stamp in the inside stating that it was donated in honor of Knox, Congenital Heart Defect Warrior, and donated to the CTICU and the step down unit of the Heart Center at Nationwide.

We appreciate your interest in providing a little Christmas cheer to children with heart problems like Knox while they are in the hospital. We still can't thank Nationwide Children's Hospital enough for all the did for our little guy and our family, and we will continue to support them however we can!

Feel free to contact me if you have any questions!

Heart-iversary

Though we just celebrated Knox's 1st birthday a few weeks ago, today was another anniversary that will forever be important in the Hatmaker home.

Today is the one year's anniversary of Knox's 1st open heart surgery.

On some of my support groups that I am apart of, parents celebrate heart-iversaries with cakes and parties. I am not sure that I want to go down that road (because there will be a year I forget), but I do feel that this life event is one that we should celebrate as it gave our little guy hope. It allowed him to grow bigger and stronger, and have a life outside of the hospital.

I couldn't help today but think about that day a year ago. I remember staying at the hospital the night before holding him as long as I could.

And then you can't help but see how far we have come. I wonder what the future will be like when I have to explain to Knox why he has a scar down his chest. Will he feel self-conscious about it? Will it bother him? I hope that he can understand how brave he was, how special he is, and what a miracle he is to us.

As I spent my day with my little miracle, one of our heart families at Nationwide Children's Hospital lost their heart warrior. They too, like us, traveled from Kentucky to get their son the help he needed. He had a long, hard road, and fought his awful CHD as long as he could. Please say a prayer for this family as they go through the unthinkable.

Congenital Heart Defects are ugly. Though they range in severity, no child should ever have to go through all this at such a young age. We will continue to raise awareness and funds to help fight against it. And until they find causes, we will continue to celebrate our heart-iversaries and our heart warriors. I know I will.

Heart Month and our Heart Hero

As many of you know February is Heart Month. While many think of only raising awareness for heart disease in women and adults, research for congenital heart defects (CHDs) is underfunded and doesn't get the attention it needs. 1 in 100 babies are born with a CHD and it kills more children than any type of children's cancer. 

Of course being new to the CHD family, I am not near as good as raising awareness as some of the other awesome moms I have met through support groups. I do what I can though. So when Nationwide Children's hospital contacted us about sharing our story during heart month we were eager to say yes. 

Though many of you have seen our interview with NBC 4 Columbus, I wanted to share the story. We met with Gina from marketing and Ellie Merritt the reporter and news anchor who would be sharing Knox's story in the Magic Forest at Nationwide. We were missing one very important guest at the party though - Dr. G! He was one of the reasons we were excited to do the interview because he would be there as well. We haven't seen him since we left Columbus, and of course, he holds a special place in our heart. 

We went up to the cardiology clinic - a place we were very familiar with and set up in a conference room. We began our interview and waited for Dr. G's arrival.  Of course when he arrived everyone stopped what we were doing. He seemed nervous because he doesn't like the spotlight, and apologized because he had been up all night in surgery. He was excited to see us and excited to see Knox. It was nice to see him and not be nervous and talking about surgery. He is such a wonderful individual and an amazing surgeron.  He have me some advice - but that's another blog. 

Ellie, the reporter was wonderful to work with- Very professional and extremely caring. She seemed interested in our journey and loved Knox. Who doesn't though? We were excited to see what they put together to share Knox's story. I am glad it is something we can show him as he gets older. Thank you to Gina, Nationwide, Ellie Merritt, NBC 4, and Dr. Galantowicz for benign apart of our heart awareness story. 

I have spoke a few times about being a part of support groups on Facebook. You can learn a lot from them and it's a great way to not feel alone. One of the groups I am a member of is exclusively for mothers whose children have had heart issues at Nationwide Children's Hospital. 

One of their projects during Heart Month is to make a video to thank the staff of Nationwide. Here is the wonderful video they made, and you might even see someone you know! Thank you JoAnne for making this video and allowing me to find comfort in this group. 

https://www.youtube.com/embed/_Kf_AXNcUyU

Lastly, the important thing for us to remember is that we should raise awareness for CHDs everyday not just in February. I have seen way too many children affected by these issues this year. 

The Reason

Dr. Cottrill (Knox's cardiologist) told us sometime ago that she writes Knox's name in the prayer book at her church. That book is prayed over several times throughout the week. But it wasn't until our return visit after Knox's second open heart surgery that Dr. Cottrill told me that after our initial meeting back on February 13, 2014 - she prayed for me.  I was a WRECK. They had just confirmed my worse fear that something was wrong with my baby. They were sending us off to another state to have our baby. She told me that she would take care of my baby upon return, but what she didn't say was she was scared too. She said that when she gets scared; she prays. And that day she prayed for me and my baby. 

I think Dr. cottrill is a saint, and like Dr. G I feel like she was placed in our life and Knox's life for a reason. 

One of the only ways you can cope with all this is to believe it all happens for a reason. That we were all suppose to go through this for some reason. 

I have learned that congenital heart defects (CHDs) are like a community. Families need support and sometimes others just don't get what you are going through. After Knox's first surgery I emersed myself in Facebook groups for CHD. I read about others stories, and even found other members of our Nationwide Children's Hospital. It wasn't until October that I finally felt my reason. My best friend Salena told me her preacher and his wife had a newborn who after a pulse ox test was diagnosed with a CHD. I immediately asked for their email and reached out to them. I needed them to know they weren't alone. I felt God leading me to their family and their new little boy. To make a long story short, they saw Dr. Cottrill as well and ended up at Nationwide. He is doing well. 

Just recently the wonderful world of Facebook led me to a blog written by a young lady who was apart of my FFA story. Her pregnancy sounded a lot like mine met with preeclampsia. We messaged back and forth, and I shared my story with her and hopefully words of encouragement. Sometimes I think it's just nice for someone to know all the medical stuff you are going through without having to explain it. Her baby was born at 28 weeks and unfortuntately now they have found a CHD. My heart ached for her as they prepare for surgery tomorrow. 

Where am I going with all this? Like it or not, this is our story. This is my story. And if sharing my experiences, knowledge (or lack there of), and emotions helps someone get through a trying time than it makes it all a bit easier to understand. As we sometimes wander why we are put in situations; I realize now that God has put my family through this experience with Knox so that I can hopefully lend support to other moms finding themselves surrounded by medical talk, doctors, monitors, and hospitals. 

Dr. Cottrill prayed for me. I feel like it's not fitting if I pray for the moms who were scared just like me. 

One Month Post-Op

It is hard to believe that a month ago today we had just endured one of the longest days of our lives. Well, labor was long - all 28 hours of it, but I don't remember much of it so doesn't seem that long to me! 

Instead I speak of the 7 hours of surgery for Knox and the 7 hours of waiting for us. Now it seems like it was so long ago. Maybe I fee like we have put that behind us now, and only look forward. 

Anywho, for those of you who don't know we were released on Christmas Day from the hospital. Though it was a wonderful gift, NEVER try to get released from a hospital on Christmas. Of course, we arrived to family, friends, and neighbors welcoming us. 

Our Christmas was low key, but very good for little Mr. Hatmaker. We did things the day after, but Santa found his way. We have tried to stay at home nestled away from the germs and the flu as Knox continued to heal. 

We have been back to our local cardiologist Dr. Cottrill, who was very happy to see us and very happy with how things went in Columbus. Knox lost some weight from our hospital stay and our recent battle with the stomach flu so we are working on getting our appetite back and gaining some weight. 

With our 10 month birthday behind us now, we are now in full party prep mode! One year old! How can that be? I had a hard time with 10 months. Double digits and growing up. It's been quite the journey thus far. 

This week, mom and dad and all of our friends are enjoying Denver. We are spectating from home, but have been prepping Knox for his National Western time in the future.

I will leave you with this. No statement could be truer, and I am so glad that I get to be his mommy,  

Day 2

Today is Day 2.  

             Morning of surgery

As most of you know on Friday Knox had his second open heart surgery. It was the longest 7 hours of my life. It was hard to sit there and wait. They didn't end up having to replace any valves at this time. They just repaired. The surgeon said it couldn't have gone more perfectly. 

We met Knox up in our old stomping grounds, the CTICU. Knox did great the first night, and they were already taking about moving us across the squirrel. 

BUT in true Knox Hatmaker style it just couldn't be that easy. We have had a few hiccups the last two days that have landed us to still be residing in the CTICU. NONE of them have to do with his heart. The heart looks great. (Insert insanely happy smile).  I don't mind being over here though because we are surrounded by old and new friends that are taking great care of our little peanut. Everything going on is pretty normal post op things around a surgery of this magnitude. His body just needs a little more time to recover. With the wonderful news we received from his surgeon, I don't care if he makes me sit here for 20 days. 

He is slowly becoming his old self. We even got a smile out of him this morning. Thank you again for all your texts, prayers, Facebook photos, and ridiculously amazing Knox Tshirt photos. 

We love you all From the bay in H4b! 

Raise your hand if you are 4 months!

Monday we celebrated Knox's 4 month birthday! 

4 months? Whoa! 

We celebrated with getting our 4 month shots which he did not enjoy, and then shopping at Trader Joe's. Our pediatrician who we love, of course only sees us for normal baby stuff. She was very happy with his growth and development. 

4 month stats: 

Weight: 10 pds 3 oz. 

Height: 23 in. 

Knox loves: 

- Taking a bath in his bath tub

- Sitting up (with some help)

New things: 

- Went to his first wedding 

- Celebrated his first 4th of July

- Went shopping for the first time

- 0-3 month clothing

- Size 1 diapers!

Knox wasn't really into photo taking because he still didn't feel well. 

Becoming a "mom"

As today is Mother's Day I have been reflecting upon my two months of motherhood.

Throughout your life and definitely throughout your pregnancy you think about how it will be to be a mother.  The moment you find out your pregnant,  hear the heart beat the first time, and meet your child are just a few milestones you long for.

Obviously my path to motherhood hasn't been the regular road like most mothers experience. Well it was until week 29, and then all hell broke lose. Our world was turned upside down. I, then began questioning myself - did I do something wrong, was something my fault, what could I have done differently? Though I knew things weren't my fault I couldn't help but blame myself. When Knox was forced to come early because of my preeclampsia issues, I felt like it was my fault that he was so small and early.

When they delivered Knox and whisked him away to the NICU I barely even got to see him. After a little bit of time they took him to Nationwide Children's Hospital to begin his care for his heart. I was left at my delivery hospital. Drew went with Knox to the children's hospital and our families went to get sleep. My aunt stayed with me, but there I was stuck at the hospital. I had just delivered a baby, but there was no baby in sight. I was a mom, but it sure didn't feel like it. The nurses were ready for me to begin pumping, but at that moment I had no emotional attachment to what had gone on. I just felt alone.

My first day as a mother progressed. Because of the preeclampsia I was confined to bed rest. I was in a rut. I was husband-less, child-less, depressed, and angry. Our families visited Knox at the hospital. Now everyone had seen him, had photos with him, and I hadn't even gotten to hold him. They all talked about him, and all I wanted to do was cry. I was angry at the world. This wasn't how this was suppose to go. This wasn't how every mother dreamed of spending her first day. A mother should be doing kangaroo care, taking pictures of their new family, and welcoming visitors. I didn't feel like a mother.

The following day I was finally allowed to meet Knox for the first time at Nationwide. The wonderful nurse even let me hold him for the first time. I had a son. The three of us were a family.

I won't lie that for the next few days/weeks I continued to struggle. I was scared for what Knox was going through. In my heart I could feel the tug of my heart strings as he had bad days, and had procedures. I knew that I loved that little boy hooked to all the wires and monitors, but I still didn't feel like his mom.

Little moments started happening as Knox progressed that began to pull me out of my hole. I changed his diaper for the first time. I helped with his chest cold care. But the day I got to hold him skin to skin, my world changed. Doctors and nurses asked me questions instead of just telling me things to know. I was a mom. I was Knox's mom.

As I look back now I know that all the worrying I did meant that I WAS a MOM. It just wasn't the typical road women go down to become a mom. I hope that going through all that, and what we will continue to go through in the future will help me be a better, stronger mom for Knox.

So Happy Mother's Day to all your wonderful moms out there. I am blessed to have joined the club and be celebrating my first Mother's Day with my little man.

Giving

In the spirit of Easter weekend I thought I would do a post dedicated to some of the wonderful organizations that have gave to our family and Knox while we have been at Nationwide Children's hospital.

Brynlee's Baskets

The other day we walked in to our room to find that an Easter bunny had came to visit Knox a few days early. There was this wonderful basket put together with toys appropriate for infant/toddlers. Brynlee is a little girl who delivers Easter baskets to children throughout the hospital. This year through donations there were able to deliver 60 baskets. I posted our picture of Knox with his basket on their Facebook page. If you would like to learn more or give click here. 

The Lauren Faith Miller Foundation 

This foundation was formed in honor of a little girl who lost her life to a congenital heart defect at the age of 3. In February, which is Congenital heart defect month, they made tshirts and sold them through booster.com. I have seen the shirt several times as nurses wear them, but sadly I can't get my hand on one. On the day of Knox's first heart cath we received an envelope from the foundation with hospital gift cards in it that are good for any food or gift shop in the hospital. Around the holidays they also furnish a catered meal for families in the CTICU; which I thought was very thoughtful. If you would like to learn more or give to their foundation click here. 

Project Linus

A few days after we moved over to the step down unit we came in to find two handmade blankets for Knox. One was a crib blanket which fits nicely over the boring hospital sheet in the cribs, and the other was a lap blanket. Project Linus gives blankets to patients in children's hospitals. There are different chapters of the organization all over the U.S. If you would like to learn more about Project Linus click here. 

A few days after we received our blankets I found out that the AJSA Junior Board had selected Project Linus as their service project and would be donating blankets at the junior nationals to the hospital in Louisville. I immediately dialed up Hannah Wine to tell her that Knox had been a recipient of Project Linus. Knox will be donating a blanket to the AJSA's cause in July. If you would like to learn more about what the AJSA is doing click here. 

When you sit at the hospital day after day it is simple gestures of love and support that you greatly appreciate. All of these organizations will be getting donations in the future from us. It's the least we can do for all they do. 

Set Backs

I knew this day would come. The day when we were so close to going home, and something would go astray. 

We were working toward going home. Passing all of our tests, learning our routine, and taking a bottle better everyday. You can't help but be frustrated. Like we were so close, and now you feel like you have had a set back. I am frustrated that this happened, but it hurts my heart that this is something else that sweet little baby has to go through. He is such a trooper. 

Over the weekend we had an issue arrive that has set us back. It has nothing to do with his heart, and hopefully will turnout to be nothing serious, but the doctors want to check things out. So a few more tests, antibiotics, IVs, and observation to hopefully rule everything out. Hopefully it's just a bug or allergy. 

So please today say a little prayer for Knox and a quick recovery from whatever it is that makes his belly upset. We were hoping to be home for Easter, but looks like the bunny will be visiting Knox in Columbus. 

Due Date

beware.. this one is kind of a mushy one. 


I sit here today on Saturday, April 12th with my one month 5 day old son and my husband at Nationwide Children's Hospital. We have been here one month and 5 days. We should actually just be getting here today. We should really just be beginning this journey. Today was Knox's due date.

But we are not. We have already been through 3 hospitals, 28 hours of labor, one heart surgery, 3 heart caths, and hundreds of nurses/doctors/people in scrubs.

I have learned A LOT in the past few months. Though this is exactly the path we had in mind, obviously God brought all this on us for a reason. Sometimes it just takes time to realize why.

First and foremost, I have learned that being a mommy is the greatest gift I could ever receive. I actually can't believe what I would have done if I had to wait until today to meet my little peanut. This little guy is such a blessing, and I am so glad I get to be his mommy.

Our first meeting
Knox - one day old

I have learned that the human body is amazing. It is really hard for me to wrap my head around what all Knox has been through in the last month. He has been so strong and such a fighter. Each day he amazes me on how far he has came. He is working to prove everyone wrong about his small size. He is trying to hold his head up and roll over. He is determined to show them all wrong. Hope he gets that from me. :)

I have learned that we have the best family and friends. Since this whole roller coaster began it is amazing on the amount of support Drew and I, and now Knox have received. I know that through this we might not have been the best at returning e-mails, texts, and phone calls, but we hope that everyone knows how much we APPRECIATE each and every person, text, and phone call. Friends from near and far have reached out to us in love and support. Our family has been with us every step of the way, and every mile.

I have learned my husband is simply the best.

And supportive. And wonderful. Actually, I knew all this already, but this experience has made me look at everything again. I had been in and out of the hospital since the end of January, and he never left my side. He slept in every hospital chair and couch to be with me. He left me cry, and cry, and cry, and cry some more. He held my hand and comforted me through labor. He has held our son, prayed for him, and been the most wonderful daddy. Seeing them together for the first time melted my heart and made me love him even more.

I have seen the power of prayer. Knox has been on so many prayer lists. From Mississippi to Washington to Florida. I actually wish I had a list of every place so I could wrap my head around an actual number. People who don't even know us have prayed. People have prayed for us in the middle of the aisle at the Kentucky Beef Expo. My husband prayed for us right before they wheeled me off to have a c-section. It has wrapped around us and comforted us through scary times and happy times.

I have learned a lot about myself. Things have been downright scary at times. I have had health complications myself which is why Knox was early. No to mention having a child with a congenital heart defect. I have had my moments of down right emotional breakdowns, but then I have rallied to be strong because thats what my family needed. At the beginning of 2014 if you had thrown a situation like this at me, you would have found me in the fetal position in the corner. I am strong (with a few moments of breakdowns in it).

I have learned that life is beautiful and precious. And this is how I know.