Lukas has been on bypass since 10:20a. His VSD has been patched and they are now working on the main truncus portion of the repair. He is doing well so far and they said things are moving right along! Please keep praying friends!
Monday, June 20, 2011
Update #2
Another quick update.
Lukas has been on bypass since 10:20a. His VSD has been patched and they are now working on the main truncus portion of the repair. He is doing well so far and they said things are moving right along! Please keep praying friends!
Lukas has been on bypass since 10:20a. His VSD has been patched and they are now working on the main truncus portion of the repair. He is doing well so far and they said things are moving right along! Please keep praying friends!
Updates.
We've received a few updates now. The operation is underway, but Lukas has not been placed on bypass yet. That should be happening anytime now. So far all of his lines have been placed and he is doing well. Please keep the prayers coming friends!!!
It's Time.
The day is finally here. Jonathan and I walked our sweet baby boy down to surgery this morning. We got to his room around 6am and spent a good hour and a half with him before surgery called saying it was time to go. We walked down with Ariana, our favorite nurse, Chrissy, his evening NICU nurse, our med student Andrew, and Abby, the doctor. Oh, I can't forget the RT too. It was so hard. That walk felt like an eternity and giving my angel kisses for that last time before he was wheeled back was immensely overwhelming. I handed that surgical team a piece of my heart this morning and I just pray that God keeps it safe. Its been an emotional day. I have dreaded this day since we found out about his special heart nearly 5 months ago and it came sooner than expected after a weekend of complications.
The decision to press forward with surgery today came after a rather rapid decline this weekend. Let me explain. You all read about the events of early Saturday morning that led to Lukas being placed on a breathing tube. Saturday evening I stepped out to pick Riley and Hayden up from my mother's house and take them to my in-laws. On my way home Jonathan told me they were doing another chest xray to check the placement of his breathing tube. I found it a bit strange they were doing another one for what appeared to be no reason, but I didn't really think twice about it. Sunday morning I found out why. Lukas had an "event" that evening where he clamped down on his breathing tube. He had a vagal response. This caused his heart rate to drop into the 40s and his oxygen saturations to fall to the teens. Jonathan said they "bagged" him and he turned blue. Blueberry blue. His heart rate dropped to the point where they almost began compressions. He had another episode like this Sunday morning when his nurse simply did oral care. This happened 3 more times throughout the course of the day. Once in front of myself and Dr. Turrentine. I only needed to see it once and I never want to see it happen again. Those tense moments waiting for his heart rate to rise and his saturations to stabilize were horrific. I can't really think of a better way to describe it. I think my own heart stopped beating until his starting rising and I just sobbed afterward. It was a terribly difficult thing to watch. Once Dr. Turrentine saw the episode he mulled it over a bit. He came in and out of our room about 6 times before finally walking in that final time and saying "I think we need to press ahead for tomorrow. Its just my gut feeling."
So, here we are. The hardest day is here and now we wait. That's all we can do. I pray today is the day we get to watch Lukas start getting better everyday rather than worse. I pray today is the day Lukas gets his life back. I know the next week or so is going to be rough. I have no images of grandeur about that notion. I know his recovery is going to be hard, but I also know he is a fighter. He showed us that many times there in the NICU. He showed us all how strong he really is. I know he will pull through this and I can't wait to hold my baby again. I can't wait to tell him just how much I love him and kiss his soft skin.
To the NICU team - you all will forever hold a special place in my heart. You saved the life of our boy numerous times and we owe all this to you. You got him to surgery safe and sound and as stable as possible. You don't get near the praise you deserve for all you do. Thank you, thank you, thank you.
I will keep the blog updated as we hear things from the OR. A nurse will come up every hour on the hour to give us updates and messages from the operating room. Please keep praying guys. Our little fella needs tons and tons of prayers right now to get through this big bump in the road safe and sound.
The decision to press forward with surgery today came after a rather rapid decline this weekend. Let me explain. You all read about the events of early Saturday morning that led to Lukas being placed on a breathing tube. Saturday evening I stepped out to pick Riley and Hayden up from my mother's house and take them to my in-laws. On my way home Jonathan told me they were doing another chest xray to check the placement of his breathing tube. I found it a bit strange they were doing another one for what appeared to be no reason, but I didn't really think twice about it. Sunday morning I found out why. Lukas had an "event" that evening where he clamped down on his breathing tube. He had a vagal response. This caused his heart rate to drop into the 40s and his oxygen saturations to fall to the teens. Jonathan said they "bagged" him and he turned blue. Blueberry blue. His heart rate dropped to the point where they almost began compressions. He had another episode like this Sunday morning when his nurse simply did oral care. This happened 3 more times throughout the course of the day. Once in front of myself and Dr. Turrentine. I only needed to see it once and I never want to see it happen again. Those tense moments waiting for his heart rate to rise and his saturations to stabilize were horrific. I can't really think of a better way to describe it. I think my own heart stopped beating until his starting rising and I just sobbed afterward. It was a terribly difficult thing to watch. Once Dr. Turrentine saw the episode he mulled it over a bit. He came in and out of our room about 6 times before finally walking in that final time and saying "I think we need to press ahead for tomorrow. Its just my gut feeling."
So, here we are. The hardest day is here and now we wait. That's all we can do. I pray today is the day we get to watch Lukas start getting better everyday rather than worse. I pray today is the day Lukas gets his life back. I know the next week or so is going to be rough. I have no images of grandeur about that notion. I know his recovery is going to be hard, but I also know he is a fighter. He showed us that many times there in the NICU. He showed us all how strong he really is. I know he will pull through this and I can't wait to hold my baby again. I can't wait to tell him just how much I love him and kiss his soft skin.
To the NICU team - you all will forever hold a special place in my heart. You saved the life of our boy numerous times and we owe all this to you. You got him to surgery safe and sound and as stable as possible. You don't get near the praise you deserve for all you do. Thank you, thank you, thank you.
I will keep the blog updated as we hear things from the OR. A nurse will come up every hour on the hour to give us updates and messages from the operating room. Please keep praying guys. Our little fella needs tons and tons of prayers right now to get through this big bump in the road safe and sound.
Sunday, June 19, 2011
Tomorrow
I'll explain more later, but Lukas is having his open heart operation tomorrow. Please pray for him!!
Saturday, June 18, 2011
A Feeling Like That.
Lastnight was a feeling I never want to experience again. Ever. I've never been so frightened nor felt so helpless in all of my life. Lukas is currently on a ventilator. Lastnight he went into severe respiratory distress and the neonatologists on call tried everything to keep him from needing the breathing tube. They tried to up his nasal cannula. Then they tried c-pap. Nothing was working to calm his breathing so the decision was made to place a breathing tube to help ease the work on his heart and lungs. It was bar none one of the hardest things I have ever had to witness. I've never felt so powerless in all of my life. I had to stand by and watch Lukas struggle to breath knowing there was absolutely nothing I could do to help him. Its an awful feeling and I pray to God no one ever has to feel like that in their own lives. Especially not with their own children. He is comfortable today. He's a bit sedated and on morphine. He's breathing comfortably and its nice to see his respirations below 100. So our boy went from this:
to this:
Talk about a change. We knew there would be some hiccups. Our teams told us rarely do you get to surgery without any. He had been doing so very well in the first week and a half of his life it was mind boggling to think he had any trouble with his heart at all. Now things are changing rather rapidly. We watched his saturations drop the other day, which prompted the need for a nasal cannula to give him some additional flow. Then he was placed on a machine called a Vapotherm, which gives humified air through the nasal cannula. They started at 2 and had it up to 6 at one point last evening before switching to the c-pap. This all started when his night nurse noticed that his head was bobbing when he was breathing and his chest was collapsing with each breath, indicating that he was working much harder than he needed to be. She let the doctor know, who promptly came to examine him. He asked for a blood gas and an electrolyte panel to be drawn since he is on IV Lasix and Aldactone (two diuretics). We were told they wanted his bicarbonate level between +4 and -4. He had been in the positive range all day, but lastnight when that lab was drawn he was at -13. Not good. His blood gas was also atrocious. This indicated a state of acidosis, hence the labored breathing. They started an IV and gave him sodium bicarbonate and ran another electrolyte panel and blood gas. Still not good. So they gave him more sodium bicarbonate, blood, fluids, and all kinds of other stuff. They also stopped his feeds temporarily.
Today, his feeds have been resumed. He was on 57mL of 30 cal fortified breastmilk. Due to the changes last evening he is only on 16mL of straight breastmilk. Barring he tolerates these feeds well today, they will bump him up to 16mL of 30 cal fortified breastmilk and work from there. They also have TPN ordered for him.
Its been a whirlwind these past two days. Our team told us that there would likely be some hiccups on the road to surgery, but he had done so well up until now I think we were a bit spoiled. Watching our son decline before we know he will get better is horrific. Its like the worst nightmare you can imagine. I watched these doctors and nurses swarm his room lastnight from around midnight to about 2:30am. And I just had to sit there and take a backseat while my son lie there. It was the worst feeling. I'm still recovering today and walking into my son's room seeing all of the equipment he is attached to now is almost more than my heart can bear. Its a big change from seeing my happy boy with just his NG tube. Now he's sedated. He moves and is reactive, but its not the same. I can't hold him. I can't cuddle him when he gets upset. I can't pat his little butt, which he loves so much. I can't even change his diaper by myself because he has so many addition tubes and wires now. Its hard for me. Its hard for this mama and it hurts so much. I just pray Wednesday comes and we get to see him start getting better. I know seeing him after surgery will be tough, but I know its forward progress. Its a step in the right direction.
So in the meantime, please pray for him. Please pray that we have no more hiccups on the road to surgery and that he makes it to Wednesday as stably as possible. Please pray there are no more scares and that there is no more hardship for this little being that I love so much. Please pray for his doctors, his nurses, and everyone who is caring for him. Thank you so much to everyone who has continued to pray for our little boy. He needs all those prayers and happy thoughts you can muster right now!
Hope you are having a happy, beautiful weekend friends. Until next time.
 |
| taken from my phone so I apologize for the pixelation |
 |
| early this morning - around 2:30am when he was finally stablized |
Today, his feeds have been resumed. He was on 57mL of 30 cal fortified breastmilk. Due to the changes last evening he is only on 16mL of straight breastmilk. Barring he tolerates these feeds well today, they will bump him up to 16mL of 30 cal fortified breastmilk and work from there. They also have TPN ordered for him.
Its been a whirlwind these past two days. Our team told us that there would likely be some hiccups on the road to surgery, but he had done so well up until now I think we were a bit spoiled. Watching our son decline before we know he will get better is horrific. Its like the worst nightmare you can imagine. I watched these doctors and nurses swarm his room lastnight from around midnight to about 2:30am. And I just had to sit there and take a backseat while my son lie there. It was the worst feeling. I'm still recovering today and walking into my son's room seeing all of the equipment he is attached to now is almost more than my heart can bear. Its a big change from seeing my happy boy with just his NG tube. Now he's sedated. He moves and is reactive, but its not the same. I can't hold him. I can't cuddle him when he gets upset. I can't pat his little butt, which he loves so much. I can't even change his diaper by myself because he has so many addition tubes and wires now. Its hard for me. Its hard for this mama and it hurts so much. I just pray Wednesday comes and we get to see him start getting better. I know seeing him after surgery will be tough, but I know its forward progress. Its a step in the right direction.
So in the meantime, please pray for him. Please pray that we have no more hiccups on the road to surgery and that he makes it to Wednesday as stably as possible. Please pray there are no more scares and that there is no more hardship for this little being that I love so much. Please pray for his doctors, his nurses, and everyone who is caring for him. Thank you so much to everyone who has continued to pray for our little boy. He needs all those prayers and happy thoughts you can muster right now!
Hope you are having a happy, beautiful weekend friends. Until next time.
Thursday, June 16, 2011
Prayers Needed
I know I haven't updated on little Lukas since his birth and I am terribly sorry. The last two weeks have been a blur. I promise his birth story is coming very soon. In the meantime we need all your thoughts and prayers. I am updating from Lukas' bedside at Riley Hospital in Indianapolis. If there are typos please forgive me, as I am on my phone.
Lukas is in heart failure. His bicarbonate levels dropped from 30 to 19, his saturations are below the target range so he is now on oxygen, and he's working mighty hard to breath. His neonatology and cardiology team have started him on IV Lasix to attempt to be more aggressive until his operation. His open heart operation was originally scheduled for the 27th, but due to recent developments is being moved to next week.
If you can spare them, please send our baby boy some prayers. He needs all he can get right now!
Lukas is in heart failure. His bicarbonate levels dropped from 30 to 19, his saturations are below the target range so he is now on oxygen, and he's working mighty hard to breath. His neonatology and cardiology team have started him on IV Lasix to attempt to be more aggressive until his operation. His open heart operation was originally scheduled for the 27th, but due to recent developments is being moved to next week.
If you can spare them, please send our baby boy some prayers. He needs all he can get right now!
Thursday, June 2, 2011
A Letter to My Son.
Tomorrow is the big day! Can you believe it? I hardly can, which is why the emotions started coming hard and strong at 7am. I think about what tomorrow holds and I have never felt such as sense of peace and beauty. On the opposite token I have also never felt such fear and uncertainty. Beyond the c-section, I really have no idea what to expect. This morning I thought about it and my heart started beating just a little quicker and it hasn't stopped since. I wrote a status on Facebook first thing this morning and cried through the entire thing. I know its going to be an emotional day. A little over 24 hours out and I am already an emotional basket case.
I decided a while back that I wanted to write Lukas a letter. He won't read it until he is much older of course, but its something I have thought about doing for a long time. I've thought a million times about what I want it to say; how I want to express every thought and feeling to my son. The truth is that I don't know if I have the perfect words. I don't know if it will ever be "perfect," but at least I gave it the ole' college try. So I wanted to share that letter with each of you on the eve of his birth.
My Dear Lukas:
Tomorrow, June 3rd, marks the day you will enter into this world. I have thought of and dreamed of this moment more times than I could ever count, but I know the real thing is going to far exceed any dream I could ever have. From the moment I found out you were going to be coming into our family on October 2, 2010, I knew you were special even though at the time I had no rhyme or reason for believing so. January 26, 2011 gave me that answer. This is the day we found out about your heart defect. I cannot express the emotions I felt that day. I had never felt so proud to see you growing and thriving so perfectly, but I had never known such fear either. It was a defining moment in my life and the day our story officially began. That day is still so fresh that it feels like only yesterday and yet, here we are, about to welcome you into this world for the first time. I can hardly comprehend the fact that this chapter of our journey is ending, while a beautiful new one is on the horizon. I am scared Lukas. I have been from the moment we found out about your very special heart. Not a singular moment has passed where I haven't pleaded with God to let this be happening to me and not you. I fear the unknown having never walked with path before. I don't really know what to expect or how things will occur once you take your first breath in this world. For your mama, the control freak and planner, that unknown is both bewildering and unsettling. Its hard for me to comprehend in many ways, but I have faith that is strong. I have faith in your medical team, but most of all Lukas, I have faith in you. That faith has gotten me through each and every day.
I started a blog for you Lukas. It was the best way I knew how to reach out to others and keep them up to date on your progression. I cannot tell you what an amazing experience it has been. So many people prayed for you Lukas and not just here at home. People prayed for you all over the world. They wrote about your story and they asked for even more prayers. I watched the world come together for a little boy no one had ever met and it was the most beautiful, touching thing. When my heart was aching so very much, all of those prayers helped to heal it. They made me stronger Lukas. They made me stronger for you. So many other "heart mamas" reached out with open arms to answer my questions, calm my fears, and give me a much needed shoulder to cry on. All those who prayed for you and left me comments, emails, and letters in the mail will forever hold a special place in my heart. You touched the heart of the world before you ever saw it with your own eyes and that is miraculous. Your impact is being felt the world over.
While I know there are difficult times ahead I want you to know something. I am so proud to be your mother. I am so awe struck by you Lukas and I cannot wait to welcome you into this world with your Daddy and your brothers. Riley talks about you all the time and he loves placing his little hand on my stomach and feeling you move. Hayden looks a little confused when he does it, but he always gives that silly laugh afterward. The world is ready for you Lukas. You are entering an incredible family who already love you so very much. They will always be here for you and they will always protect you. I watched this family I love so dearly pull together so much in our time of need and it has meant everything to me. So much love and admiration awaits your arrival. You have made our world and our story so much richer and more beautiful and we are truly blessed for that. You have already brought such beauty and majesty into my life and that of our family Lukas. I cannot wait to see the man you become. I cannot wait to watch you grow and make your mark on this world. I know you will do amazing things one day Lukas and I look forward to watching that story unfold.
Tomorrow we will celebrate your birthday. We will not wait for the struggles ahead, but rather we will bask in every moment we get to whisper "I love you." We will cherish every moment we get to wash your perfect skin with our happy tears. We will celebrate every moment and we will cross those hard bridges when we get to them. We will get through it Lukas, I promise you. For now though, we get to love you and touch you and kiss you whenever we want. And I can't wait Lukas. I can't wait. I love you with everything inside of me Lukas and I will never stop fighting for you. I will always be here and I promise I will always give it my all. Thank you for allowing me to be your mother Lukas. Thank you for changing my world for the better and for making me a better person. I love you my sweet boy.
Love You,
Your Mother
Please say a prayer for tomorrow friends. Please pray that Lukas' birth is as uncomplicated and easy as possible. Pray for an easy transport to Riley and just pray for our boy all around. Thank you to every one who has followed our journey so far and prayed for our family and for Lukas. You will never know the extent to which you have helped me get through this; how much strength and perseverance you have instilled in me. While this chapter is coming to a close and the curtain is about to fall for the final time, I hope you will continue following and sharing as our new chapter begins. I promise it will be beautiful =)
So, here is to tomorrow and to Lukas!
I decided a while back that I wanted to write Lukas a letter. He won't read it until he is much older of course, but its something I have thought about doing for a long time. I've thought a million times about what I want it to say; how I want to express every thought and feeling to my son. The truth is that I don't know if I have the perfect words. I don't know if it will ever be "perfect," but at least I gave it the ole' college try. So I wanted to share that letter with each of you on the eve of his birth.
My Dear Lukas:
Tomorrow, June 3rd, marks the day you will enter into this world. I have thought of and dreamed of this moment more times than I could ever count, but I know the real thing is going to far exceed any dream I could ever have. From the moment I found out you were going to be coming into our family on October 2, 2010, I knew you were special even though at the time I had no rhyme or reason for believing so. January 26, 2011 gave me that answer. This is the day we found out about your heart defect. I cannot express the emotions I felt that day. I had never felt so proud to see you growing and thriving so perfectly, but I had never known such fear either. It was a defining moment in my life and the day our story officially began. That day is still so fresh that it feels like only yesterday and yet, here we are, about to welcome you into this world for the first time. I can hardly comprehend the fact that this chapter of our journey is ending, while a beautiful new one is on the horizon. I am scared Lukas. I have been from the moment we found out about your very special heart. Not a singular moment has passed where I haven't pleaded with God to let this be happening to me and not you. I fear the unknown having never walked with path before. I don't really know what to expect or how things will occur once you take your first breath in this world. For your mama, the control freak and planner, that unknown is both bewildering and unsettling. Its hard for me to comprehend in many ways, but I have faith that is strong. I have faith in your medical team, but most of all Lukas, I have faith in you. That faith has gotten me through each and every day.
I started a blog for you Lukas. It was the best way I knew how to reach out to others and keep them up to date on your progression. I cannot tell you what an amazing experience it has been. So many people prayed for you Lukas and not just here at home. People prayed for you all over the world. They wrote about your story and they asked for even more prayers. I watched the world come together for a little boy no one had ever met and it was the most beautiful, touching thing. When my heart was aching so very much, all of those prayers helped to heal it. They made me stronger Lukas. They made me stronger for you. So many other "heart mamas" reached out with open arms to answer my questions, calm my fears, and give me a much needed shoulder to cry on. All those who prayed for you and left me comments, emails, and letters in the mail will forever hold a special place in my heart. You touched the heart of the world before you ever saw it with your own eyes and that is miraculous. Your impact is being felt the world over.
While I know there are difficult times ahead I want you to know something. I am so proud to be your mother. I am so awe struck by you Lukas and I cannot wait to welcome you into this world with your Daddy and your brothers. Riley talks about you all the time and he loves placing his little hand on my stomach and feeling you move. Hayden looks a little confused when he does it, but he always gives that silly laugh afterward. The world is ready for you Lukas. You are entering an incredible family who already love you so very much. They will always be here for you and they will always protect you. I watched this family I love so dearly pull together so much in our time of need and it has meant everything to me. So much love and admiration awaits your arrival. You have made our world and our story so much richer and more beautiful and we are truly blessed for that. You have already brought such beauty and majesty into my life and that of our family Lukas. I cannot wait to see the man you become. I cannot wait to watch you grow and make your mark on this world. I know you will do amazing things one day Lukas and I look forward to watching that story unfold.
Tomorrow we will celebrate your birthday. We will not wait for the struggles ahead, but rather we will bask in every moment we get to whisper "I love you." We will cherish every moment we get to wash your perfect skin with our happy tears. We will celebrate every moment and we will cross those hard bridges when we get to them. We will get through it Lukas, I promise you. For now though, we get to love you and touch you and kiss you whenever we want. And I can't wait Lukas. I can't wait. I love you with everything inside of me Lukas and I will never stop fighting for you. I will always be here and I promise I will always give it my all. Thank you for allowing me to be your mother Lukas. Thank you for changing my world for the better and for making me a better person. I love you my sweet boy.
Love You,
Your Mother
Please say a prayer for tomorrow friends. Please pray that Lukas' birth is as uncomplicated and easy as possible. Pray for an easy transport to Riley and just pray for our boy all around. Thank you to every one who has followed our journey so far and prayed for our family and for Lukas. You will never know the extent to which you have helped me get through this; how much strength and perseverance you have instilled in me. While this chapter is coming to a close and the curtain is about to fall for the final time, I hope you will continue following and sharing as our new chapter begins. I promise it will be beautiful =)
So, here is to tomorrow and to Lukas!
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