Aiden and Evan – 7/27

One of our first questions we had for the neonatologist was what kind of chance the boys have at a normal life. According to Dr. Creswell, all the research he’s seen shows that babies born in the 24-25 week range have a survival rate of 80%. Of the babies that do survive, only 35% have any kind of handicap as a result of being premature, which means there is a slightly better than 50% chance that our boys will get through this without any lasting issues.

During the first several days of life, the biggest concerns are infection, lung development, and brain hemorrhage.

The risk of infection is present in all new born babies as they have been relying on the mothers immune system for protection. For premature babies the risk is even higher. Immediately after birth, both Aiden and Evan were given antibiotics to help fight any infection that has or may occur. So far, no signs of an infection are present in either Aiden or Evan.

At 25 weeks gestational age, the lungs are not fully developed. While they are capable of exchanging oxygen, the structure of the alveoli is not fully developed and the lining inside the lungs that help protect them from infection is missing. In addition, babies this young are at an increased risk for apnea, which is where the baby essentially forgets to take a breath. Immediately after birth, both Aiden and Evan were placed on a high speed oscillating ventilator. This machine pushed a small amount of air in and out of their lungs 15 times a second. The result of this is that you could see their little chests vibrating, which looked like it would be hard on them but, according to the doctor, is thought to be the gentlest way to deliver air. To help keep blood oxygen levels up, the air provided by the ventilator is mixed to a higher oxygen level than normal air.

So far Aiden has progressed a little better than Evan with regards to lung development. They were able to reduce Aiden’s oxygen content down to 21% (normal air level) within the first day. Evan took a little bit longer but also has been able to get down to normal oxygenation levels. The doctors use x-rays to see how well the structures of the lungs are developed and fill with air. Aiden’s x-rays have been looking clear, which from what the doctor says is good. Evan’s x-rays have shown that his right lung is clearer than his left. If all goes well, this should get better with time.

This morning, Dr Creswell decided to try to wean both Aiden and Evan off of the high speed oscillating ventilators and onto ventilators that assist in their breathing but allow Aiden and Evan to do most of the work of taking breaths. Doing this is somewhat trial and error. They remove the oscillating ventilator and use blood oxygen saturation levels to monitor how well the boys are doing.

Both Aiden and Evan are breathing on their own! The oxygen content of the air is elevated to help out but they are able to breath by themselves. We are so proud of our little fighters!

The third big worry at this point is brain hemorrhage. During the first 72 hours after birth babies this young may have bleeding in the brain. This bleeding can fill in around the voids inside the brain and prevent the brain from continuing its normal development in these areas. The result of this depends on what part of the brain the bleeding occurs in and the severity or amount of bleeding. Any bleeding that does occur opens up the possibility of mental retardation so we are very worried about this. Dr. Creswell has told us that it’s about a 50-50 chance that there will be some bleeding in babies this young. Typically there are no visual clues that bleeding has occurred unless the bleeding is very severe. Furthermore, there is little that can be done to relieve the bleeding as they are too young to undergo any kind of surgery or to even have a needle inserted to relieve pressure. The only way to tell if bleeding has occurred is to do a sonogram of the head. Because there is nothing that can be done if bleeding is occurring, this is not done until the period of greatest risk has passed. The boys are scheduled to get a sonogram done on Thursday so hopefully we will find out what we are dealing with then.

We’ve been asked the same questions by multiple people many times. I’ll attempt to answer some of those questions here:

Q: What caused Janel to go into labor? A: We don’t know. We asked Dr. Moreno this and she said there is typically no way of telling what causes a mother to start labor at an early date. We asked if the infection Janel had or the medicine given to treat it could have caused it and she said the infection may have played apart but she doubted this was the only reason and that the medicine, if anything, would have helped avoid preterm labor. She also stressed that it was not anything that Janel or I did that caused it. Personally, Janel and I think that the infection and medicine provided just enough stress to her very pregnant body to trigger some sort of survival reflex where her body decided it had to get rid of the babies. Friday her cervix was tightly shut and in less than 24 hours she was 5 cm dilated. So to us this seems like an abrupt decision her body made. I’ll be the first to say though we don’t really know what we are talking about here so take our explanation with a grain of salt.

Q: If the babies make it through the first X small amount of time will there chances of survival increase greatly? A: Does not sound like it. I’ve asked Dr Creswell these kinds of questions and the answer I’ve gotten is that there will be different things at different times that can go wrong. Right now we have the lungs, infection, and hemorrhage issues to worry about. Next week we will have a new list of things to worry about, and after that yet another list of thing, and so on and so forth. However, every day the boys make it and every day we can cross things that can go wrong off the list, the closer we get to getting through this okay. Unfortunately it does not look like an exponentially decreasing list of things that can go wrong but rather a linear progression.

Q: How long will they boys need to be in the NICU? Dr. Creswell has been very careful not set any false hope and expectation. The NICU is doing their best to simulate the environment the babies would have in the womb so it is reasonable to guess they will be there until they become full term, which is 15 more weeks in our case. However, they do not have a set amount of time they have to be in the NICU and the time here could increase if complications arise. The doctors will use the condition of the babies to determine when they are ready to go home. When we reach the point where we can do everything at home that the NICU is doing then we can take them home. We have been told by several people that it is not uncommon for one baby to be ready to go home considerably earlier than the other.

Q: What do the babies look like? A: I’ll post some pictures we’ve taken so you can get an idea for yourself. Their skin is very thin right now so they appear red in color. They both have bruising in spots from the delivery, especially Evan, though this is starting to go away already. Aiden appears further developed in the face. His nose is more rounded out than Evan’s (we think he has a Davis nose) and he is able to open his eyes. Evan’s nose is still somewhat sunk in and his eyes are still fused shut. Since Evan is longer and lighter, he looks thinner than Aiden. (We are all wondering how Evan got to be tall and thin as neither Janel nor I are very tall and I certainly don’t qualify as thin.) Evan has fuzz on his checks and chest that is real fine and hard to see unless you look close. We have not seen it for ourselves but the nurse says Evan has a little bit of blonde hair on his head.

Q: Is there anything we can do to help? A: The only thing we need right now are prayers. Janel and I really do appreciate all of the offers of help we have received. It truly gives us comfort to know that we have such a wonderful network of friends and family to help support us and Aiden and Evan. Janel will not be able to drive for 3-4 weeks due to her C-section, so she may be bumming rides to the NICU. Keep this in mind when reading the next question…
Q: Can we visit the babies? A: Yes. Two people at a time can be in the NICU to visit the babies. However, outside of grandparents, either Janel or I have to be with the second person.