Yesterday we left him at noon and everything was great. Erin held him and he performed really well feeding and being held. We left in great spirits as the last week has been pretty consistent and progressive for him.
About 745P while we were on the way to see him for his 8pm Care Time and I got a phone call. It just says, "Unknown" on my phone when the hospital calls and its always a nurse or a doctor giving us an update. These are always a little unnerving, and will continue to be.
So our nurse called to inform us of some changes and that Harrison was fine, but that he was breathing harder and for longer stretches of time than he usually had. They wanted to give him some rest and help him out. She explained that he was going to go on the SiPAP, the pulsing CPAP, to help him breathe.
When we arrived another nurse stopped us at the NICU desk to keep us from going in to see him. She let us know they decided to intubate him back on the respirator and that it may not be a good time to go in to see him. This was so alarming! He had declined so rapidly our hearts just dropped. We were so upset because it wasn't what they had told us on the phone initially and it was very scary because we left him at 130 and everything was fine.
We eventually walked back to his bed and there was about 8 people around him working on him. We saw him on the SiPAP but he was not responding very well, so they were preparing him for the respirator.
We stood around and listened to doctors in a daze and unbelief. Just 8 hours before and for several days in a row he seemed to be doing so well.
We eventually had to leave because it was just too much too soon and the doctors told us they would call us. That 90 minutes until we returned were filled with the most gut wrenching stress we've felt so far. We felt so confused. We didn't want to leave, but we didn't want to stay either.
So leading up to this point Harrison had been showing signs of strength and performing well. Sporadically, throughout the last week he had signs of breathing very quickly to keep his O2 saturation up. But he would pull through and his numbers would return to a normal level. Doctors kept waiting because of his signs of strength and fortitude to do well on his own.
Over time his lack of muscle structure hasn't been able to keep filling his lungs completely. In turn as less of his lungs were being utilized they slowly began to close. As they slowly closed, less of his lung volume was being used even on the CPAP. Consequently he had to breathe faster and faster to keep up with less lung volume. For an extended period of time he was breathing 100 times/min. And his heart rate was screaming over 200/min. They want him to be around 40-60 breaths /min and his heart rate at 160-170. Seeing all that effort he was pouring out doctors thought it best to intubate him and let him rest for several days. He was absolutely exhausted after all this work.
So last night Harrison pretty much said, "Listen, I'm really tired and I need some help." And the doctors gave it to him.
We decided to stay a night in a family room in the hospital to be close to him and check in on him periodically throughout the night.
Almost immediately he was comfortable on the ventilator and very stable. They drew blood labs to find out if the quick retraction had anything to do with an infection and to check his red blood cells. He has no infection but he has become anemic over the last week. Something we suspected from his symptoms over several days. This is very common among pre-mies.
So he has received 2 blood transfusions to increase his red blood cells. That means more cars to move more oxygen on the highway, which in turn means his body will be less stressed to oxygenate. Smoother breathing and slower heart rate. So he is very comfortable today and his color looks great. All his blood labs came back very positive showing signs his body is functioning normally and we can assume his decline was attributed to exhaustion. His blood pressure and heart rate are both very good.
As Harrison rests and recovers from his rough night our hearts are really anxious today. We have limited perspective on this ride and had no idea what this would be like. They told us it would be a few steps forward and a step back, but the way this went down was next to terrifying for us. So we are still really scared and emotionally exhausted today. Doctors have been very encouraging and informative to let us know that to go back on the respirator is very common with babies his size and age. We feel like it is a step backward, but it is really the best possible thing for him as he continues to grow and develop. He will continue to climb the ladder as soon as he gets some much needed rest.
Last night before we went to sleep, I was quoting Psalm 23 over Harrison and us and stillness and peace gave us both some sense of security to help us be able to sleep. But it was restless night. And today as we've received more good news and updates, we still are very wary as we enter the hospital each time.
Pray peace over our hearts and that Christ would be our shield as we walk into the NICU.
Pray for good counsel and informative relationships that will help us have appropriate expectations as we continue on this journey.
Pray for our marriage as we lean on each other and encourage each other to think about what is true, and not about the "what if's".
Pray for a tenderness toward the Lord and a steadfastness on his promises.
Pray for Harrison to recover and his body to be rejuvenated and strengthened as he takes a break from so much work he has been doing.
Pray Christ would protect his little body and fight for Harrison and with him as he recovers.
Pray there would be no long-term consequences to the quick nature of last night's events.
We love you, and are so grateful for your encouragement and prayers.