Always Amazing.

Amazing is never an adjective I imagined I would be using to describe this journey, yet here I am. This road has been filled with so many ups and downs. Its filled me with pride, understanding, gratitude, and compassion that I have never before known or experienced in my lifetime. In short it's been, well amazing.

 There is something about being the parent to a baby with a heart defect that has left me forever changed. I've had the opportunity to witness struggle and heartbreak and the miracles that lie on the other side. That is what Lukas is. A miracle. A living, breathing, beautiful miracle right here in my arms. In his seven weeks of life he has faced challenges and obstacles most will never know in a lifetime. Despite it all, he's perfect. With clothes on you would never know what he had been through. Just over a month ago he underwent open heart surgery, but unless you saw his incision you probably wouldn't believe it. Its a fact many folks we encounter are shocked to hear. We beam with pride everyday that we are granted this amazing opportunity to be his parents. Its really miraculous. I can't even describe the feeling in words. 

Yesterday was our one month post-op visit with Dr. Turrentine. That pride I explained kicked into high gear when he walked into the room. He had two x-rays in his hand; one from the day after his operation and one from yesterday (he had a chest x-ray prior to seeing Dr. T). He told me I needed to see these. At first I was a bit worried they weren't good. I couldn't have been more wrong. In fact, they were excellent. According to Dr. Turrentine it was one the best post-operative x-rays he had seen. He told me to take the pictures home and show them off, because they were just that awesome.

what a marked difference! how is that for awesome?

When Lukas went in for his weights and measures, Dr. T's nurse noticed he had some bubbly scabs on his incision. She soaked them in peroxide while we waited on Dr. Turrentine and when he came into the room he knew immediately what to do. Lukas had a reaction to the dissolvable stitches that were under his skin. This meant he needed to have his incision "revised" a little. Good in the long run, not too good at the time. Dr. Turrentine had to pull the scabs away, pull the sutures underneath, and cut them. It was a bloody mess that left us with one poor, upset little boy. So we have to see him again next week just to check on its healing progress and make sure its up to snuff with Dr. Turrentine's expectations. In the meantime he have to clean it with alcohol, coat it with bacitracin, and dress it twice a day. 

I know you all haven't really had the opportunity to really see Lukas minus tubes and wires and without the post-surgery swelling and bloat. So in the spirit of sharing what a miracle he really is, its time to really "present" him to the world. Ladies and gentleman, I give you the amazing Lukas Robert Corwin.

 

So glad you all get to officially "meet" Lukas now! About time, right? =) I know, I'm a slacker (whomp whomp). 

Happy almost weekend friends! 

P.S. - because there is such a need for awareness and to spread the word about CHDs and their effects in our little ones, I am working on creating a calendar showcasing some of these little miracles. It will show so many of these little beauties and what extraordinary obstacles they have overcome. Every one of these children are miracles. Every single one. I'll let you know when its complete!  All the proceeds of the calendar will go towards families of little ones with CHDs and to increase awareness. I'm very proud of this endeavor and hope you will join me in celebrating each of these miracles right here on Earth! Details to come soon, promise!

Lukas Robert: A Birth Story

June 3rd was an extra special day. That was the day we welcomed our littlest boy into the world. The day was full of anticipation and joy. We were due in the OBICU at 11:00 to get everything ready to go for Lukas' extra special arrival. After a long night of checking and double checking everything was in its place and packed properly I finally got a little bit of sleep. Not much though. I was just too nervous/excited/scared/overjoyed to sleep. I knew it was going to be a life altering day. Not that my previous two births weren't, but this one was uniquely different. Lukas was going to be entering the world under very different circumstances. 

We woke up the boys and got them dressed. I made sure their bag was packed with the necessities since they were going to be staying with Grandma and Grandpa for the week. We dropped them off at my mother-in-law's and sat around for a few moments to talk. Jonathan stopped and got himself and the boys breakfast at McDonald's, which stunk for me considering I wasn't allowed to eat. We sat around the table while Jonathan, Riley, and Hayden ate and talked about the days events and what time we wanted the boys to be brought to the hospital. We decided we wanted the boys there before I was taken back to the OR so I could kiss my only two boys good bye before they became big brothers (for the first and second time). I needed them near me because as the moment drew closer the more scared I became. Finally at 10:30 I told Jonathan we needed to get going. We kissed our little boys and told them we would see them in just a little while. We walked out the door, got in the car, and made our way to University Hospital. 

As the skyline of Downtown Indianapolis came into view the emotions started coming strong and steady. I was excited to meet this little boy who had my heart from hello, but man was I scared. I had absolutely no idea what to expect or what those first few moments after his first breaths would be like. I had a silent pep talk with myself that I could do this and that Lukas was going to be okay. I needed to believe it and believe it I did. When we pulled into the parking garage my nerves kicked into high gear. I had been nervous throughout the morning, but nothing like I was when pulling into that garage and watching Jonathan put our car in park. We grabbed our bags and my pillow and made our way inside while I took big, deep breaths and told myself it would be okay. 

We got to the second floor and walked through the maze to the OBICU. I checked in and gave them my name. They smiled at me and said "you are the 1:00pm c-section, right?" I smiled right back and said "that's me." They told me Dr. Schubert was in clinic right now, which I knew, and said that he would be down when he was finished. I thanked them as Natalie, our OB nurse, walked toward us and introduced herself by telling us she would be taking care of us. She walked us into room 5 and said this was going to be our room for the time being. She showed me where my gown and footies were and told me to go ahead and get undressed while she went and gathered a few things. I grabbed the gown and footies off my bed and walked towards the bathroom. When I got in there I paused and asked Jonathan for my camera. I then looked in the mirror and took what would be my last belly picture. The clock was counting down and my time as a mama-in-waiting was coming to a close. I wanted to savor those last moments. After I snapped that picture I got teary eyed, rubbed that big belly, closed my eyes and said a prayer for the little boy inside. When I opened my eyes I finished getting dressed, folded my clothes, and walked out to sit on the bed. 

A few moments later Natalie walked back in and got me strapped up to the monitor. His heartbeat was strong and loud and I beamed with joy. She had all the stuff next to the computer screen to start my IV and in the next few moments she had it placed. She let me know that anesthesia would be coming to talk to me soon as well as Dr. Schubert. She no more than finished that sentence and our anesthesiologist walked into the room. In the choas of the moment I really didn't hear his last name, only his first. It was Chris. He asked me if I had ever had a spinal before, which of course I had. He talked through the procedure of placing the spinal, the risks, and all that jazz before I signed my consent forms. Before he walked out of the room he asked if I had any questions. He was incredibly nice and said he would see me again soon. A few moments after he walked out a resident by the name of Dr. Pickett came in and introduced himself to me and said that he would be taking part in the delivery today. He joked around with Jonathan and myself before Dr. Schubert walked in. By this time my little boys and my in-laws were there. He came in and said that his clinic duty got over early, which never happens. He asked me how I was feeling and I made a comment to him about how everyone was torturing me by eating in front of me when I was starving. He came back at me with a comment about how he could always go and get his lunch and eat it there too. Very funny Dr. Schubert. He said he was going to get dressed in his proper OR attire and that he would see me soon too. 

Then my Dad walked in. He asked me how I was feeling and I told him we were going to be going back in just a few minutes. I was getting more nervous by the minute, but I tried not to let it show. Natalie was looking at the monitor and my Dad peered over her shoulder and asked if I was contracting. Believe it or not I was in early labor, little did I know. Natalie told him I was and showed him the contractions on the screen. Anethesia walked back in and Jonathan was handed his delivery attire as well. Instead of scrubs like it had been in the previous deliveries it was a solid, one-piece white get up that kind of looked like a HazMat suit. He went in and got dressed and we all laughed hysterically as he walked out. He made a comment about how he looked like a certain male reproductive element and had everyone in the room laughing. I was handed my antacid drink, which is always disgusting. Then the time was here. It was time to walk back to the OR. They handed me the OR cap and told me to go ahead and get it on. After I was disconnected from the monitor I got out of bed and  swallowed hard as I kissed Riley and Hayden. I told my in-laws and my Dad goodbye and told Jonathan I would see him on the other side.

That walk with Natalie and Chris, the anesthesiologist, felt forever long. The OR was mere steps from my room in the OBICU, but it felt so intense. Like something out of a movie. The OR was cold with its green tile walls and gray floor. The lamps shown bright above the bed and there were tools, trays, drapes, and people waiting for me everywhere. There were multiple surgical techs, who introduced themselves to me. Then the attending anesthesiologist walked in and introduced herself. They got me up on the table and had me sit Indian style while they tilted the table. I kept feeling like I was going to fall off. Natalie started her surgery time in, but the attending anesthesiologist stopped her because they needed someone else in the room. This delayed the process of placing my spinal just a bit while they called and got the person they needed in the room. Then the time in took place and Chris got started. He poked around on my back for a few minutes until he found the spot he wanted to go. He placed a little dot and then told me he was going to clean the site so I was going to be feeling something cold. A few seconds later I felt that sharp pressure in my lower back, but it only lasted for a moment. Then they grabbed ahold of me as my legs started going numb and laid me gently on the surgical table. Chris gave it a few moments to work up through my abdomen and he started the tests to see how numb I was. When he was satisfied they got me on oxygen through a nasal cannula as they got the drape up and got things set up to go. In those moments I started feeling terribly nauseous and started sweating. I told Chris who took my blood pressure. It was something like 60/30, which was met with a "guess we need to get that up, huh?" He gave me some medication to get my blood pressure up and I instantly felt better. Then everyone started walking in one by one. Dr. Pickett, Dr. Schubert, and another OB whose name I cannot for the life of me remember. I saw everyone getting suited up and asked about Jonathan. They promised he was coming. Then just as they were about to make that first cut Jonathan came in and took his seat next to me. I was trying to hold off tears as I felt things get going.

Jonathan looked at me and in just a few moments I saw people moving and Jonathan got up off his seat as I felt the pressure of that big push on my stomach. He was coming! Then the pressure ceased and I heard the most amazing sound in the world. I heard him cry. It was a strong cry too. I immediately broke into my hysterical tears as Chris gently rubbed my forehead and told me he looked amazing. They lowered the drape for me to see him, but through my tears I could only make out this little peachy pink blur. Jonathan and the neonatology team walked out of the OR with my freshly delivered boy and made their way to the surgical island where he would be assessed and stabilized. Then Dr. Schubert got to work on closing me up. There were lots of laughs and funny conversations that took place in that OR while he worked. I breathed a sigh of relief that Lukas was born screaming and everyone told me how beautiful he was and how great he looked. Before I was moved onto the gurney to go into the recovery room someone from the neonatology team came in to let me know that he was doing beautifully. They told me his birth weight and length and I just continued sobbing those big, wet, happy tears. They rolled me this way and that way and got me onto the gurney and wheeled me into the recovery room. 

My family made their way in and out of the room when it was announced that neonatology was done and that Lukas was coming by to see me before he was transported over to the Riley NICU. I watched Melanie, one of the neonatal nurse practitioners walk through the door and she announced that I had an extra special visitor. A respiratory therapist followed behind her with the isolette that held my precious boy. I don't think she even finished her sentence before I immediately broke into tears yet again. They asked if I wanted to do skin-to-skin contact, which was met with a wildly enthusiastic "YES!" I unbottoned one side of my hospital gown and they laid this tiny, warm body on my chest. And in that moment my heart was bursting. They told me his saturations were in the 90s, which was way better than they had anticipated. He was a beautiful pink color and looked so perfect. His tiny hands and his tiny feet. I looked over every inch of him as I stroked his soft skin and just relished in becoming a mama for the third time. I washed that little boy with some of the biggest tears I think I have ever cried. I could have stayed in that moment forever. I closed my eyes so many times and just silently thanked God. I kissed my perfect boy and told him how much I loved him. 

photo by Daddy

Then the neonatology team apologized by saying they needed to get him over to the NICU, as they were waiting for him. They lifted his little body from mine and they placed him back in his isolette. Jonathan went with our boy to Riley and I cried hard as they left the room. I felt so alone in those moments. With Riley and Hayden I got to hold them and love them the entire time I was in recovery. This time I only got a precious few moments with him and I knew it would be quite awhile before I would see him again. It was devastatingly hard. My heart felt like it was breaking as the neonatology team walked away with a piece of it. They told me they would stop by my room, that was now full to the brim with my family, to show him off before they made their way to Riley. I thanked them and away they went.

my big boys meeting their baby brother for the first time courtesy of my family

picture from my sister-in-law, Mandi

Then the time came for me to make my way to my postpartum room. They worked their magic and Natalie made her way to 2 South. As we went by room 5, where just hours earlier I waited in anticipation of Lukas' arrival, I just peered inside. The room was now empty as the L&D team had told my family where my new room was and where to wait. We went by and my mom was standing outside the door and followed us. As we walked by the 2 South waiting room I saw my family. So many of them had come out to see Lukas and I. Of course, being the emotional mess I was, I started crying again as we passed them and they hugged and kissed me and told me how beautiful he was. They let my family know they were going to get me situated into my room and they could come see me as soon as they were finished. Natalie handed me over to my nurse and she told me it was such a pleasure being there for his delivery and how happy she was for me. Maggie was my 2 South nurse and she was amazing. She was so friendly and kind. She got me hooked up to my morphine PCA pump, got me comfortable, and then she opened the gates. My family came flooding in like cattle and I'm pretty sure I started crying again. Jonathan came back and took everyone one by one over to the NICU to lay eyes on our special boy. As the crowd dwindled I was left alone to rest a little. I just closed my eyes and smiled. The day had come and gone so quickly and even in its imperfect nature, it was perfect. My Lukas was here and he was safe. He was breathing, pink, and beyond beautiful. 

I even got to see him that evening. At first I was told I wouldn't be able to see him until the next morning because of my PCA pump. When the night nurse came in, she told me I could go. My sister had to work the next morning so she stayed that first night with me. She wheeled me over to Riley at close to midnight so that I could be with him and visit with my boy. It was amazing. He had a head full of dark hair and was just perfect in every way. 

taken from my cell phone

So, there you have it guys. The story of my miracle's birth. He's been such an inspiration and such a blessing. I'm so unbelievably blessed and lucky. Our boy made it into the world safely and made it through his first open heart surgery at a mere two weeks old. He's a warrior through and through and he has been through more in his first month of life than most of us will in a lifetime. He's here and he's amazing. I wish you could each hold him in your arms and get a glimpse of our Heaven. Thank you for helping usher this little boy into the world and into our lives!

If you read this whole thing, thank you =)

First Pediatrician Appointment.

I'm a little tardy to the party, but Lukas had his first appointment with our beloved pediatrician, Dr. McAteer, on Tuesday. She was absolutely in love with him. She gushed about how much he looked like Riley and Hayden combined and she could not get enough of his curly hair. She said it was perfect! She is so fantastic. We just love her. 

In any event, back to the appointment. Lukas is still weighing in a 7lbs 1oz. This was his discharge weight, which means he has not gained anything since his discharge on the 29th. His height has increased to 21.25", which is up from his birth height of 19.75". Good news. As of right now he is in the 5th percentile for weight and 50% for height. He's just a peanut, but Dr. McAteer was not overly concerned. Lukas currently gets 24 cal fortified breastmilk in his bottle. So we are double checking his weight gain next week and then if there is little to not change we will up the density of his feeds. We just need to find that perfect balance. So we get to see Dr. M next week too! Woo hoo! 

These next two weeks are going to be busy for sure. We have our annual family picnic on Sunday, a weight check for Lukas next week, my 6-week postpartum check up, and then Lukas' follow up appointment with Dr. Turrentine on the 20th. 

For those of you who are anxious to read it, I am working on Lukas' birth story. I actually have it written up and I just need to add the corresponding photos from my camera. I'm sure it will be emotional, so bear with me! I promise it will be up within the next day or so. I cried like a baby writing everything out. Its still so fresh and yet Lukas has come so very far. So watch for that soon guys! The pictures are amazing. They are probably my favorite part. I think they could tell the story themselves =)

Happy Thursday friends!

This Time...

This day two weeks ago the decision was made that Lukas would undergo his truncus repair the following day. It came after a weekend of distress and turmoil where Lukas went from simply having an NG tube to being on a ventilator. We watched everyday as he got progressively worse and we cried more times than I think any parent ever should. The night before his operation induced both a sense of calm and a sense of fear. It all came about so quickly and unexpectedly. I mean, we were slated to go home earlier that week (in hindsight I am so thankful we never made it home). His changes came about rather rapidly and his decline was sharp. We stood by and witnessed things I would never wish on anyone. 

Today nearly two weeks after the operation that gave my little boy his life back I get to sit and watch him sleep peacefully at home (yes we are home now!). I get to watch him be a regular newborn for the first time since his birth. This morning I found myself reading through my Facebook status updates and reliving the rawness of the moment I handed my son over for his operation. It was a moment I had thought about a million times, but it was so much more emotional and real than I ever could have dreamed. I knew this operation had to be done and I knew it was the only way my son's life would be spared. That day I literally handed a piece of my heart to that surgical team and just prayed to God that they would keep it safe. I'm blessed to say today that they did. The team of nurses and doctors at Riley Hospital for Children gave my son his life back. They kept him safe and they fixed his broken heart. I thank God everyday for every single person who was there for Lukas. Every person who made contact with him and with us. Every nurse who cared for him and every doctor who examined him. Without them I'm not sure I would have my little warrior today. We came so close to losing him and the staff at Riley will never know how thankful I am for everything they did for our family. Each and every one holds a dear, special place in my heart. 

If you had told me a year ago that I would be writing this blog and that my son would be undergoing open heart surgery I would have looked at you like you were delusional. Yet, here we are. I've shared Lukas' journey with each of you and its been such an amazing, empowering experience. I cannot wait to share many more happy, beautiful moments with you all. You each held my hand as we worried and waited. You all prayed for this little boy and I don't even know how to begin to thank you. Words alone don't seem nearly appropriate enough for the gratitude I feel in my heart. I hope you all will accept my words as a token of my true, deep appreciation for everything. For reading his story. For praying for a little boy who needed help. For thinking of us and our family no matter the distance. Thank you.

Nearly two weeks after Lukas' surgery he is breathing easy at home. We were released from Riley on, ironically, Riley's 4th birthday. On that day our big boy got the best present he will ever get - our family back together again. Our family is whole and complete now. Its been a magical few days. It felt so familiar yet so uniquely different bringing him home for the first time. Our last day at Riley was filled with many visits from NICU staff and doctors who had heard the happy news from Dr. Parent, one of the first year cardiology fellows who performed the echo before his discharge (he also did the echo upon Lukas' admittance to the NICU). The car ride home felt so surreal. I sat next to our boy and just kept starring at him because I could not believe that day had finally come. Our baby boy is such a dream. He is perfect in every way. We are so very blessed that he was otherwise healthy, aside from his wonky heart parts. Over the course of our hospital stay numerous tests were performed on Lukas to see if everything else was healthy and working properly, as this was important information for the medical team to know. Since truncus is sometimes associated with a condition called DiGeorge Syndrome, a DiGeorge genetic probe was conducted just days after his birth. Those results came back negative. They looked at his lungs and pretty much every other organ system. Everything was perfect. That was a huge sigh of relief for Jonathan and I. We were very blessed that our little boy would not have to be battling other issues on top of his truncus. We knew many families who shared the NICU with us were not as blessed and for them my heart ached. I know we are very lucky in a number of ways. When things started getting bad with Lukas it was so very hard to see how blessed we truly were and continue to be. It was both the best and worst experience of my life. It was the worst because he's my son. I never wanted this to happen to him and I would have given everything for it not to. It was also an eye opening experiencing. There are many things in my life I will never again take for granted. It left me forever changed.


While we know this is not the end of the road for Lukas, we are basking in the beauty of his first open heart surgery being behind us. My boy shocked us all with his strength and perseverance. He's an inspiration to me and I am so very proud to get to be his mama. I promise his birth story and lots and lots of photos of our precious little fella are coming soon. 


Happy weekend friends! The 4th is tomorrow and I wish you all a safe and festive holiday!


P.S. - Happy 1 month birthday to Lukas! A month ago he came into our lives and expanded our hearts!