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Preemies
thought we had lost our son, but he is a fighter!!
Last Friday was the worst day of my life.
My son had been doing great after his trach surgery. They were weaning down his vent settings and working on his oral feedings. They were even discussing transferring him to the rehab center soon. We thought he was on the right path towards coming home. We had a tour of the rehab center scheduled for Friday afternoon. I was getting ready to leave the house when I got a phone call from the NICU that there was an emergency with Ethan and I needed to get to the hospital as soon as possible.
Because of his lung disease, Ethan occassionally had episodes called bronchospasms where his lung muscles would basically clap down and his o2 and heartrate would go all the way down. It was always very scary, but it would only last for a few seconds and then the nurses would bag him and he would come right out of it. These episodes were happening less frequently. However, Friday he had a bad episode and they couldn't get him out of it. He had no heartbeat at all and he was deprived of oxygen. It took them over 30 minutes to resuscitate him. They finally got his vitals stable, but they told us he might not even make it through the night. After being deprived of oxygen that long they believed his organs may shut down and that he could have severe brain damage.At this point we thought we had lost him. It was the worst day of my life by far.
They decided to do a treatment called the "cool cap" which is induced hypothermia to prevent further swelling in the brain. This cap is usually only used with newborn full-term babies who come out of the mom not breathing, but they figured it couldn't hurt. The cool cap treatment was a 3-day process so he had to wear it from Friday until Monday. Luckily, in the meantime his other organs (i.e. kidney, liver) started recovering. They were now just worried about how much damage was done to his brain. The neurologist was preparing us for the possibility of having to take him off support because of how much damage he may have faced. She said most adults who were deprived of oxygen that long would probably not even be alive. She said best case scenerio was that he would likely have major disabilities. That was the longest weekend of waiting ever. He was having seizures (shown on an EEG), so they had him very heavility sedated on seizure meds during that whole time.
The cool cap came off on Monday evening so they scheduled an MRI for Tuesday to get an idea of how much damage was done. The neurologist came to talk to us and said she was SHOCKED at how good his brain looks. She had to double and triple check that it was the results for the right baby. He has a few minor areas of abnormalities, but his brain looks almost normal. She couldn't believe it. Everyone in the NICU is just amazed and keeps saying he is a miracle baby. They were all expecting so much worse news. The cool cap must really be what helped prevent severe brain damage.
He is now being fed again (through the feeding tube) and was slowly weaned off the seizure meds so he is starting to wake up a little more. He also suffered severe burns on his foot from one of the meds they used to get his heart going, so he will likely need a skin graft. We still have a very long way to go. He will still have further brain scans and will now be in the NICU a lot longer, but we are so thankful that he is still here with us. Ethan truly is a fighter!!!
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Re: thought we had lost our son, but he is a fighter!!
What a fighter! T&P
Wow! I can't imagine how scary that must have been.
I'm glad you have such a strong little guy. Keep pn fighting, Ethan!
BFP#2 3/16/11, beta 138; 4/12 Baby/HB DS born 9/10/11 at 29w4d due to partial abruption and PTL
BFP#3 8/19/13 Another boy! 17P, modified bedrest and Nifedipine helped us have a termie! DS2 born 4/19/14 at 38w5d.
OMG, that must have been so scary for you! Your son is such an amazng fighter!
My son was on a cooling blanket for 72 hours as well, Video EEG, etc (full term but deprived of oxygen at birth amongst other things). It is an amazing invention to say the least!
I had never heard of it until my son and then a few months ago a women I work with had some medical issues where she stopped breathing and they put a cooling blanket over her for 72 hours as well. I thought it was only for babies.
I am so happy that your LO pulled through. He is truly a miracle
I will be thinking about you guys.
I'm so sorry you are going through this. I can't even imagine how scared you are. Anoxic brain injuries are scary business, but thankfully, the newborn brain is so incredibly resilient!
The fact that they are weaning him off the seizure meds is HUGE! What did they have him on? Phenobarb? It's a fierce beast! My daughter was born and started having seizures 40 hours into life. They had her on phenobarb for a while. Hopefully, Ethan doesn't need to go back on seizure meds, BUT in the event that he does, have them look into Topiramate. They have done studies in Boston at Childrens Hospital showing the effectiveness of Topiramate/Topamax on newborns who suffer anoxic brain injuries. When babies are often resistant towards phenobarb, Topamax steps in and works like magic - it did for us!
He really is a miracle baby! I hope his recovery continues on the track it is! Just goes to show how amazing our babies really are! Love to you!
Thank you! So glad your son is doing well now!!
Thank you! Ethan was on Phenobarb and Versed. The Versed had him really sedated so when they started weaning that he was waking up a little. Now they stopped the Phenobarb and he is even more alert although still groggy bc it is still in his system. So far he doesn't appear to be having seizures anymore, but they are going to do another EEG this weekend so we will see if he needs to go back on the meds. Thanks for the tip about Topamax. I will definitely ask about that!