Guess What?

Someone is extubated! They took the tube out yesterday and we got to hear the faintest, sweetest little cry. It made my heart soar to finally hear my baby boy again. His cry is getting louder now and he is even cooing and "talking" to himself a little today. He is bright eyed and busy tailed and just enjoying life without a breathing tube. Dr. Turrentine was a big champion for him in getting the tube out yesterday. He was pushing mighty hard - so thanks Dr. T.

I have a picture to show you, but I'm having trouble pulling it up for some reason. So I promise to put it on here as soon as it cooperates :) He looks awful handsome if I do say so myself!

Thank you for your continued thoughts and prayers friends. They are working for our boy and I can't tell you how much I appreciate every single one. Keep them coming as we begin working on feeds, removing tubes and lines, and getting moved before we can get home!

Happy Friday friends :) Hope it's a beautiful one and you all have an amazing weekend!

P.S. - happy third week birthday Lukas!!

That Darn Breathing Tube.

Our poor Lukas did not get extubated yesterday, unfortunately. Since his sternum was closed up the day before they decided to do the weaning yesterday rather than trying to rapidly wean him and extubate him the same day. It just places less stress on him and makes the process a bit easier. I was a little sad though. I really wanted to get him extubated so I could hear him again. I miss hearing his cry so much and yesterday he was just breaking my heart. 

First he yawned. Less than 5 seconds afterward you saw his face tense up and he made the face like he wanted to cry. He had tears streaming down his face, but there was no sound. It was so hard to watch. He was given an extra dose of Fentanyl to try to ease the discomfort and pain, but it didn't really seem to help him much. He barely slept at all yesterday and he just seemed so terribly uncomfortable and upset. It absolutely broke my heart for him. I know today they are planning on turning off his Fentanyl drip and only giving pain medication to him as needed. I know that's part of the plan, but the idea of him being in pain just sends me into an emotional tailspin. I just have to keep telling myself its all part of him getting better. Last evening they actually gave him a medication that does not control pain, but it actually induces the same brain waves that are created when we are sleeping. It is just to help keep him calm so he did not get upset quite as often and cause him to be uncomfortable.

a little dark (Jonathan took this from his phone), but this is the start of his "angry" facial expressions - the stink eye

They started feeds on him yesterday through his NG tube as well. It was a continuous amount rather than a set number every few hours. It was actually somewhat interesting because the breastmilk was drawn up in a syringe and it was placed on an IV pump that went directly into his NG tube. Unfortunately the feeds were discontinued last evening as it was upsetting his stomach (causing more episodes of him getting upset) and giving him gas. Plus, he has to be NPO (nothing by mouth) for several hours before his extubation as well. Its just another stepping stone for him. If the extubation goes well today then they will resume the NG feeds, starting very slowly and in small amounts of course. 

So for now we wait. The team of intensivists should be rounding here in the next few minutes and we will know the detailed plan for the day. Let's get that breathing tube out buddy! Pray for a good day for our little fella and that we can get him off the ventilator and working towards getting home!

Happy Thursday friends!

The Good Fight.

He did it guys. My sweet boy made it through his first open heart surgery! I can't believe it! And the best part? He's making such amazing progress. I had planned on updating yesterday when we got word of whether he came off bypass okay. When that update came and the family nurse told us he came off of bypass just fine we broke down as a family. We were all sobbing. That hour waiting for that news was tense. The entire operation was tense, but that final update was a nail biter. Dr. Turrentine had talked with us about the possibility of needing ECMO if removal from the bypass did not go as planned. He even spoke with the ECMO technicians to let them know it might be needed. Just as a heads up. Thankfully he came off of bypass like clockwork and ECMO was not needed. Phew.

The family nurse told us to pack up our things in the semi-private waiting room we were in and to head downstairs where Jonathan and I would get to speak with Dr. Turrentine ourselves. When we got down there she walked us into one of the day surgery waiting/recovery rooms and she handed me something that was really magical. It was the material used to patch Lukas' VSD. The very one Dr. Turrentine had cut from. It even had some of Lukas' blood on it, but it was so neat to see and to have. A little while passed and "the man" walked in after much anticipation. He told us everything had gone perfect. He bled quite a bit, which is why it took a little longer. He told us that the actual operation was over by around 12:30, but it took about 2 hours of coagulation therapy and such to get the bleeding under control and to get his drainage tubes placed. Then he told us something interesting. Both for him and for us. He said the echos before and after birth showed a tricuspid aortic valve (what used to be the common truncal valve). When Dr. Turrentine got in there, it was actually only a bicuspid valve. So it had two leaflets instead of three. He said it was the first time he had ever seen that in a truncus case before. Guess our boy is just extra special, eh? But he was not concerned and told us the valve looked beautiful and should last a very long time. Good news. Dr. Turrentine also told us they did decide to go ahead and leave his sternum open, although he thought he could have closed it. He just decided it was better to follow the standard protocol just to err on the side of caution.

We rejoined our family in the main waiting area and waited. Dr. Turrentine came in again and said Jonathan and I could go back in about 10-15 minutes. So we waited and joked around. More than 10-15 minutes had passed and we were getting antsy. So Jonathan and I decided to meander our way into the unit to ask if we could see him. Dr. Farrell and the cardiology team was standing at the end of the hallway and waved us down to come over. And we finally got to lay eyes on our precious boy. He looked great for just coming out of open heart surgery. He had some extra tubes and a whole lot of IV bags going, but did not otherwise look dramatically different than he had upstairs. I was so relieved. They all talked about how amazing he was doing and how great his numbers were. Dr. Turrentine said there really was not anything he wanted to see change and that they may go forward with the closure of his sternum the following day. 

a little dark, but this gives you an idea of how much equipment he has right now - this was after a few IV bags had been removed

immediately following his operation - the first time we got to see him

Today his forward progress continues and we could not be more pleased. Dr. Turrentine raved about how well he was doing. During morning rounds they said they were forging ahead with closing his sternum this afternoon. Dr. Turrentine was in the operating room, but they said as soon as he was done he would come and see us. Around 2:00 he came in and had us sign authorization forms to go ahead with the closure after starring at the monitors for a few minutes and checking on his continuous lab draws. Then anesthesia came in and we signed their consent form as well. They unfurled our boys numerous IV lines and got him ready to roll. I forgot the OR was in this unit, so when they stopped us at the OR doors I was a little confused. Then I remembered. Silly me. 

heading off to the OR for his sternal closure

Our little rockstar did wonderful during the procedure! They left around 2:30 and brought him back around 5:30. By 6:30, they had turned off his paralytic. Dr. T is so pleased with his progress thus far that he is actually talking about extubating him tomorrow! They will begin slowly weaning him off the vent during the day with the hopes of having him extubated by the evening. From there we work on feedings. First through the NG tube and then by mouth. I'm so excited! 

our little rockstar coming back from the OR - yes I had to have a picture of the moment!

Now that they have his paralytic turned off he is moving around and wiggling his tiny fingers and toes again. I have missed that in the past several days. The best part? He's waking up and he is opening his eyes when I touch him! I even got to hear a little yawn type noise from him this evening. Its the first time I have heard him since Saturday and I could barely keep myself together when it happened. 

opening his eyes for the first time since surgery - "hi mama"

We love him so much. I am so honored to call him my son and I am so very proud of this little miracle. I knew he was a fighter. He showed us so many times in the NICU. He is doing so good and he is blowing the minds of everyone down here in the PICU, even Dr. Turrentine. He is making such amazing progress and doing so very good! Your prayers worked guys! Thank you all so much! Today is the first day of Lukas' new life and it was amazing. I look forward to many more amazing days ahead with him as we watch him grow and improve each day. He's our miracle and I know he is going to do great things one day. I love him with all of my heart and soul. Dr. Turrentine kept that piece of my heart safe and he will never know how grateful I am for doing just that. So to Dr. T - thank you from the bottom of my heart. Thank you for giving my son his life back! 

I will keep you all updated on tomorrow's events and what happens with the extubation. Pray for a good outcome and that we can get him off the vent. This mama is chomping at the bit to hear my sweet boy again. It has been far too long.

Happy Tuesday friends! I hope your weekends were beautiful and bright and your week has been magical so far!

P.S. - we were told down here that truncus is one of those defects that is missed VERY often prenatally. One because it is so rare and two because all four chambers of the heart are present. Sometimes that is all that is looked for during prenatal ultrasounds. We found out initially because our original OB had difficulty viewing the outflow tracks from his heart. I cannot imagine having not known or what might have happened had this not been diagnosed. They said had it not been diagnosed he may have been sent home just like any other newborn. Had we not had this NICU team here....I'm not sure I would be sitting with my beautiful boy today. So always ask questions during your ultrasounds guys! Ask about the outflow tracks. Ask about everything. If there is any question, ask for a referral! 

Update #3

We just got word that the truncus repair is complete. The VSD was repaired as I mentioned in the previous post and a 12mm Contegra graft was placed. They are waiting on cardiology to come and do a transesophageal echo, which will take 3D images of his heart and each of the chambers to see how well the repair has worked. If all looks good he will come off of bypass! This is the part that scares me the most. The next update we should receive is whether the removal from bypass was successful.  Please say a prayer this next hour goes well and our sweet boy does not require ECMO.

I am so thankful he is doing so good thus far. Your prayers are working friends! Please keep them coming! The next hour is going to be tense while we await word of how his removal from bypass went. So keep those prayers coming!  

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! 

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.

Tomorrow

I'll explain more later, but Lukas is having his open heart operation tomorrow. Please pray for him!!

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:

taken from my phone so I apologize for the pixelation

 to this:

early this morning - around 2:30am when he was finally stablized

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.

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!

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!