Baby Hayes update

Thanks to everyone for being so patient. I had planned on posting an update last night but by 8:30 I was exhausted, emotional, and in a lot of pain so I just went to bed. I will do my best to remember where I left off and all the things that have happened in between but at this point the last three days have run together in a seemingly neverending roller coaster of good news, bad news, and overwhelming emotions. Yesterday (Saturday) morning I called down to the NICU to check on Hayes and he was doing well. They had taken him off the ventilator in the middle of the night and put him back on the C-PAP. Dr. Schneider came up to talk to me around 9:30 and let me know that they had done some x-rays and found two pneumothoraces (noom-o-thoracees. pneumothorax is the singular) in his lungs. A pnuemothorax is a little hole that lets out air and fills his chest cavity. At that point they took him off the C-PAP because they didn't want to force air into his lungs as this could do more damage. They put him under a oxygen tent which looked like a little astronaut helmet and decided to let the pneumothorax resolve and heal on it's own. Yesterday morning he was put under the oxygen tent with 40% oxygen and throughout the day they were able to wean him down to 25%. They also took the tube out of his stomach (remember that it was there to suction out any air that got into his tummy as a result of the air being forced into his lungs). Since they weren't forcing air into his lungs anymore there was no need for it to be there. Ben and I went down yesterday afternoon and spent some time with him and he was stable at 25% oxygen for about 30 minutes. Then they went to give him some lipids through his IV and found that his IV had gone bad. The nurse said that they put calcium in with his line and it makes the veins a bit brittle so the IVs don't last very long. At that point he had had the IV once in both hands and once in his scalp. They tried to move it to the other side of his scalp but it didn't take. They then tried to put it in his forehead with the same results. Finally they were able to get it back into his hand. After that they took another x-ray to see if his pneumothorax was looking any better. At that point the x-ray looked really good. There was definitely less air in his lung cavity and his heart had moved back into the right place (when the lung cavity fills with air it puts a lot of pressure on the lungs and heart which not only causes a lot of discomfort but pushes the heart over further than it should be). Dr. Schneider was very optimistic about his condition. He ordered no more blood taken out of his umbilicus, no more x-rays, and a switch from the oxygen tent to the nasal canula. He felt that we could go ahead and start feeding him this morning which meant that we could possibly hold him. We went to bed feeling really good about his condition and excited for this morning. Then around 4:00 this morning I woke up thinking about him and wondering how he was doing. I called down to the NICU to check on him and his nurse put me on hold for a few minutes. When she came back on the phone she said, "Dr. Schneider will be up to talk to you in a few minutes." I knew that if his doctor was there at 4am on a Sunday something had to be wrong." Within 5 minutes Dr. Schneider was in my room explaining that at around 2:00 this morning Hayes had started fussing and they couldn't get him to calm down. They figured he was in some pain so they did a chest x-ray and found that the pneumothorax on his right side had gotten worse and there was quite a bit of air accumulated in his chest cavity. They put a catheder in and suctioned out about 50mL of air. After that he settled down and then again around 4am they noticed that his breathing had become very labored. The did another x-ray and found that his chest cavity had accumulated some more air. They suctioned out another 50mL and decided to air lift him down to McKay Dee hospital in Ogden. He had been collaborating on Hayes's care with Dr. Anderson, the neonatologist in Ogden so he felt comfortable that he would be taken good care of. Also, in Ogden the ventilator is much more gentle on the lungs than the one they have in Logan. He figured Hayes would need another round of surfactant and putting him on the ventilator would be necessary. He wanted to put a chest tube in to relieve the air that accumulated. He called Ben from my hospital room and then headed back down to the NICU to check on Hayes. I called my little brother (who usually goes to bed around 4am) and caught him just as he was dosing off to sleep. I asked him to go to our house and stay with Maddie while Ben came up to the hospital to see Hayes off. I then headed down to the NICU. After about 10 minutes Ben arrived and we both just sat with him while we waited for the life flight team to arrive. When they got there they gave him some fentanyl for pain, then made a small incision on the side of his chest. They took the tip of a pair of hemostats and punctured his pleura then inserted the chest tube. Immedietly his breathing slowed down and was much less labored. After getting him switched over from his bed to an incubator they wheeled him outside as we followed. They put him in the helicopter and he flew away. Sitting there watching our baby fly away in a helicopter was definitely the hardest thing we've had to do. We went back up to my hospital room, sat down on the bed and just cried together for a few minutes. Here are a few pictures from his departure.



Here you can see the chest tube stitched into his chest.




Here he is switched over to the incubator.




This is the incubator they transported him in.


Putting him in the helicopter.


Getting ready for take off.


There he goes.


Immedietly we began making plans to head down to Ogden. My nurse called my doctor to let him know what was going on and he told her to just let me go. We got our stuff together and headed home. We packed a bag and headed, with my mom down to Ogden. On our way down we called the NICU to check on him and were told that he was doing much better. When we got to Ogden (about an hour drive from Logan) we were very reassured. He is doing really well. He is very stable. He is on a ventilator but will be weened off within the next 24 to 48 hours. They did give him another dose of surfactant. He also has a feeding tube going into his nose now and they will try to start feeding him through that either tomorrow morning or this evening. He still has the catheder in his umbilicus so they can draw blood without poking his heel every time and the chest tube is still in place. His temperature is stable, his heart rate is stable, his blood pressure is stable, his oxygen levels are stable and his respiration is down from 100 to about 55 (They don't like it to be above 60). Last night when we talked to Dr. Schneider he said that his capillary refill was pretty slow especially in his lower body. He said that a baby's circulation is different in the uterus than it is outside of the uterus and sometimes, especially if there is stress at the birth it takes a baby's system a little bit longer to switch over. Physiologically his body doesn't want to switch over yet. I checked his capillary refill while we were there and it was a lot faster - probably normal. There is hardly any air coming out of his chest tube at this point. There is some fluid coming out which is completely normal. The nurse said that when there is trauma to the body fluid rushes to the area so that's what is leaking out. The pnuemothorax that was on the left side has resolved just in the 2 1/2 days since his birth and the neonatologist said that it usually takes 2-3 days for them to resolve. I think he is still a little drugged from the fentanyl because he was very, very asleep while we were there. At 8:30 tomorrow morning we are going to what they call "rounds" at the NICU. That happens every morning when all the doctors, nurses, dietecians, respitory therapists, etc. that work with the babies meet together to talk about the babies progress and plan of care. They invite the parents to sit in and ask any questions they have. We are staying with our friends in Bountiful. Ben has to head back up to school but will not do that until Tuesday. Maddie and I are going to stay down here until Hayes in released. Here are a couple pictures I took of him at the NICU in Ogden this afternoon. We are about to head back up there and stay for a few hours so I'll probably update again tomorrow afternoon or evening.







Thank you so much for all your thoughts and prayers. They are definitely being heard and providing us with a lot of much needed comfort. Please keep them coming!