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:

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.
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  1. Oh Christie, I'm so sorry. I don't know what else to say. Sending positive thoughts and prayers :(

  2. Brings tears to my eyes Christie, I'm praying!!

  3. Such a strong sweet boy with a strong mama! I'm so sorry you all are going through this. I am sending you strength and love as you wait for his surgery. I hope the next few days are uneventful and the surgery goes perfectly.

  4. We're all praying very hard for you and Lukas, hun. He will make it through this rough patch, I know it. He's a fighter.

  5. Christie, congratulations on such a beautiful little boy. I am so sorry for his struggle and for you and your family. I will carry you all in my heart and pray for all of you too.

  6. I'm so sorry you had to witness that. So scary. Sending lots of love.

  7. The song that is playing in the background as I read this entry played at the exact time that Lukas was born. Thats good luck if I've ever seen it! Its proof that he will have a very Good Life!

  8. My heart is breaking for you! I too am a mom and can only imagine what you are going through. Our little family will continue to keep your family and little Lukas in our prayers. Praying that all goes well with his surgery and to keep you all strong. Know who holds you all close! He will never let you go, He will never let you down!

  9. We send your family our love and our prayers.
    Greetings from Spain.

  10. I have just found your blog through another heart blog. I'm praying for Lukas! There is this thing called the "CHD shuffle" where you seem to take a step forward and then two steps back. It's heart-wrenching. I'll continue following/praying!



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