Prior to the birth of the babies, we were told the first 72 hours were the most critical. Within that time was the highest likelihood of a brain bleed, or even death. We are now at almost 96 hours and they are still with us and little fighting machines.
Nolan had a fairly uneventful first few days. He is being fed through a line in his belly button and on day 2 started receiving 1ml of breast milk every 6 hours through a feeding tube down his throat and in to his tummy. Today he is increased to 2ml every 4 hours. The intent of the breast milk is not for nutritional value but to prime their guts for when they do start eating. Either way it's a great sign he can tolerate it, and makes me feel good that I am contributing to his care.
From the moment he was born, Nolan was put on a ventilator and alternating back and forth between breathing straight room air and needing assistance with added oxygen. Everything else about him remained stable, and still does. Today he was extubated (taken off the ventilator) and put on CPAP (continuous positive air pressure) - a mask forcing oxygen into his lungs and helping him to breathe. Although the CPAP mask looks scarier than the ventilator it is actually much better for them as it doesn't require any tubes down their throats. However, first minor setback today put Nolan back on the ventilator a few hours after he was extubated, as his blood gasses showed he was not tolerating. Not really that surprising and we were told to expect it.
Asher on the other hand, had a harder few days than Nolan. He had issues with both his blood pressure and his pH and was put on medication for both. He has successfully been taken off both of those meds and his BP and pH are both now within the normal range. Because Asher was not stable, he only started breast milk yesterday, receiving 1ml every 6 hours. He is tolerating it well too.
Asher did really well with the ventilator right from the beginning and was only breathing room air, never needing assistance with oxygen. Yesterday they actually changed the ventilator settings to allow Asher to do most of the breathing himself and just lead the ventilator when he needed help. He was also extubated today and put on CPAP, and so far is tolerating it well and has not needed to be put back on the vent so far.
Head ultrasounds are routine for premies because brain bleeds can be quite common. Asher had one the first morning as they suspected that a bleed may have been contributing to his other problems, but it came back normal. Nolan had one on day three (the standard timeframe they were planning on) and it also came back normal. At that point we breathed a big sigh of relief because we thought we had weathered the first 72 hours without any major issues, at least none that couldn't be solved with medication.
The bad news came this morning when Asher had another head ultrasound, now that the 72 hours were complete. It found he had two bleeds, one in either side of his brain. The one in his left side was minor and we didn't even talk about the implications of it. The one in his right side is quite severe however, to the point that the doctor is confident that it will cause long term problems. No one at this point can predict the severity of the impairment which makes the news more difficult to absorb. It won't become obvious until Asher is older (approaching 1 year) and using his limbs more. It may be as severe as total loss of use of the left side of his body, and may be as minimal as a limp. They also have no way of telling at this point if it will cause cognitive impairment. There is nothing they can do to treat it at this point, only wait for the blood to be absorbed.
As you can well imagine, this is devastating news. It is difficult enough to manage each minute of the day right now without adding the looming thoughts of Asher's future and what it may hold. I know we need to concentrate on the present and the myriad of other issues they could encounter in the here and now and try not to think about a year from now. However ask a parent not to worry about their baby's future (especially an over-thinker like me) and it is pretty much impossible.
I know Jordan promised more details of the birth but I'm not up for sharing those details. I will only tell you that at 6pm I was in bed, fine, at 6:05 Jordan got an urgent phone call, and at 6:27 Asher was born. I will leave you to imagine the panic that ensued in those 22 minutes and you can imagine why I don't want to talk about it. All I can say is that I am incredibly thankful for the calm expertise of all the doctors involved. Unfortunately Jordan was not allowed in the room, but seconds before I was put under I was told he had made it to the hospital and was outside the door. As soon as I was brought to recovery Jordan was with me, where he has remained throughout the hospital stay as much as was feasible with Rio.
Physically, I am ok. Apparently a c-section under general anaesthetic is much more painful because you don't have any of the freezing of a spinal to take you through the first few hours of pain management. Additionally because of the emergency of it all I am more bruised than I would have been, my incision is slightly larger, and my uterus tore beyond the incision. All that being said, I have a lot of drugs and just need to focus on not doing too much because I really feel the exhaustion if I push myself. I have also been reasonably successful in pumping breast milk and will continue that until I am able to feed them myself. It is a lot of work but I am happy to do anything I can to help make them stronger.
Mentally, this is all a lot to handle and we are just trying to figure out how to process it all. Tomorrow we meet with the NICU social worker to try to talk through all of this and find the balance between staying strong for the boys and Rio, and letting ourselves be vulnerable and accept what a difficult situation we are in.
So now to all of you again...I just can't say thanks enough. To everyone in town for the food, babysitting and good wishes, to everyone out of town who is sending their good thoughts and even offering to fly in to help. The five of us are truly blessed with an amazing support system. Unfortunately, especially for those of you that aren't here, there isn't a lot you can do to help us, except to pray. Pray for Asher and Nolan right now, pray for Asher's future, pray for our entire family and how we are going to deal with all the bumps we are no doubt going to encounter in the coming months.
I know the pictures showing how tiny they are with all their tubes might be scary but they really are beautiful. They look just like normal babies, just a tiny version. Right now we can only put a hand on them when they are stable but as they get bigger we will be able to get more involved in their care, and at some point even hold them. It has all been very surreal as a mom to have plexiglass between me and my babies and to never have even heard them cry, much less held them and fed them. Rio has met her brothers and absolutely loves them. While she doesn't seem at all bothered by all the tubes and monitors, we anticipate that there will be some frustration as more time passes and she still isn't able to touch them or take them home. But this will be a learning experience for all three of us and we will be there for the babies as much as we are able.
With any new developments, we will keep you posted. We are still really not up for visits but we do appreciate the emails and calls even if we don't reply individually. Like I said, positive thoughts and prayers, and I know we will get through whatever we are given. I will post more pictures soon.