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.

Passing the tests

I know I have been light on the updates, but it has been a busy week. Since we were moved across the squirrel we have been working toward going home. This week it had been kicked into high gear. 

Knox passed his car seat test and his hearing test! 

We also had to take our CPR class. Since mom and dad were here we took them along! 

Knox says it has been a busy week and he is ready for the weekend! 

One Month Old

This week Drew and I should be home preparing for the arrival of our first child who was due April 12. Instead I am sitting here watching my husband and my one month old son nap in the recliner at Nationwide. 

The last month definitely has not been easy. A month ago I had no idea what today would look like, but clearly it is beautiful. Knox has gone through so much but he is so strong and has come so far. 

Looking at this sweet little guy now who has completely stolen my heart; I can not imagine if I had to wait longer than I did to meet him. 

So happy one month little peanut! Let's celebrate with a National Championship tonight! 

Knox's stats

Weight: 5 Pds 8 oz. 

Height: 18 inches 

Eating: by bottle and tube 

Breathing: all by himself 

Across the Squirrel

Have you ever had a place or thing that you want to grab, touch, or achieve but it seems just out of reach? 

When I first was allowed to come visit Knox after our labor journey together I arrived on the 4th floor of Nationwide Children's Hospital. There were two doors. To the right is the Cardio ICU where Knox was and to the left was H4A with a large wooden squirrel celebrating the two. I quickly learned that moving across the hall or across the squirrel as they refer to it here was where you wanted to get to because it meant that you were in the step down unit and getting closer to going home. 

So each day Drew and I have made our journey up to the 4th floor and over to the CT ICU to be with our little man. 

But today....

Hello from across the squirrel! 

Knox has been such a strong little man and doing well that we got moved to the step down unit! Which means today Drew and I officially become real parents! We can change all his diapers, and hold him as much as we want. We don't know just yet when we will get to go home, but it is definitely on our minds now. 

And we got a real crib! 

Today is an amazing and scary day but we are very excited (and a bit overwhelmed!). Keep praying for lots more progress and a healthy baby! 

Knox sends his love! 

Strong

I came across this quote from Bob Marley the other day from an Instagram friend Jamie, and it really hit home with me. Jamie and I became Instagram friends through a common bond of Agriculture and beef cattle, but now I feel our connection became a lot deeper. Jamie's son was also born premature. It's nice to have a mommy friend who understands your situation. 

I am amazed every single day by Knox. He is by far the strongest human being I have ever met, and I get to be a part of it everyday as his mommy. This journey has tested how strong Drew and I are, but Knox knocks it out of the park. I'm not gonna lie that there have been days when it is really hard for me to be strong, but then you look at this face.

Knox has been through so much already and he has been so incredibly strong. Is it possible for someone who is 25 days old to be your hero? This little guy has stolen my heart, and is the strongest, most amazing little man. Have I told you how blessed I am to be his mommy? 

We have had a great last few days. Knox; as you can see from the photo above is breathing room air just like you and me. You want to be so excited, but you also realize that set backs are possible in this journey. But for now we are taking these wonderful last few days and celebrating them. 

Sunday Selfie! 

CPAP day

As we sit here in our room today, the floor is quite because it's the weekend. The cafeteria was deserted. We tried a new place for lunch down the "blue path" today and we didn't see hardly any people. Did we mention we love the weekends? 

Before you can get off the vent you (as in the patient) must go through something they call CPAP tests. It's basically where Knox is doing all the breathing on his own but some pressure that is put off by the vent. The pressure is because since he still has a tube in his mouth it's like trying to breath through a straw. They do this test for an hour every 4 hours to see how he tolerates it. There are lots of things they check for and watch during that time. Knox? He passed with flying colors. So they will continue to do those until tomorrow morning, and if they all go well then hopefully by tomorrow it will be goodbye tube. Then we will get to hear our little man cry and make noise! Hallelujah! 

The wonderful thing was during his test he was wide awake the whole time! Which meant lots of great time to visit and talk. :) 

Please continue to say a little prayer for Knox and that the next 24 hours goes smoothly. We also hope that you can say a prayer for a dear friend of ours that had their twins at 26 weeks yesterday. We know how scary it is, and that prayers sure do work! 

Have a wonderful Saturday! 

3 weeks

Today is Knox's 3 week birthday! I can't believe it has been 3 weeks since this little man came into our life. Though it has been a rough and bumpy road with highs and lows; I can't imagine waiting till our due date to meet him! 

We had a wonderful first in knox's life this morning. We had our first tummy time! Here at the hospital they call it "prone" which is to help get the awful flem and junk out of his throat and lungs that you and I can cough up. Laying on the stomach helps break it up, but we chose to call it tummy time. Knox loved it. He was very chill and slept the whole four hours. His 3 week picture was taken on his belly. 

The doctors are still working on weaning down the vent. They have been happy with progress, but just don't want to do too much at one time. 

We are hoping for lots more good reports over the weekend! Continue to pray for lots more positive reports!