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!

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!