Baby Steps

Marcy and I have learned a lot about human development in the past couple of weeks since the boys were born. Here are a few things I thought you all might find interesting.

• Babies are single minded developers. Their little bodies are so small and the available energy needed for development is so rare that their bodies will only use the energy to develop a single system at a time. If they are having heart trouble, for example, their bodies will work on that system before moving on to “less essential” systems like stomach and bowels.
• 40 weeks isn’t just a random number. The complex systems put in place by God truly are miraculous and they take time to develop. Babies really do need every second of those 40 weeks to get ready to exist in the outside world. Our babies were born at 32 weeks meaning that there are sill 8 weeks of development that need to occur in their bodies and minds before they are truly ready to begin the process of growth and development as babies.
• Weight doesn’t matter. You might think that the babies small size and weight are a factor but they really aren’t important in and of themselves. An underweight baby can still go home with Mommy and Daddy as long as they reach certain developmental goals.
• Time is the hardest thing to give. As parents, your instincts tell you that babies need human contact and nurturing. This is true of a fully developed baby. Fully developed babies like to be rocked and cuddled and sang to. Preemie babies don’t have those same needs. What they need most is sleep. That means that right now the best thing for us to do is not be with the babies most of the time and that separation can be hard.

In the NICU, there is the critical area where the babies are watched over by a nurse at all times. When the babies become a little more stable, they are moved to another area in the NICU called Baby Steps. In this area, one nurse might look after four or five babies at a time. Thursday, we received word that the boys had been moved to Baby Steps. This is certainly progress.

When Can They Come Home?

This is the number one question that I get asked and the one I simply do not have an answer to. What I can tell you is the plan for the boys. As soon as they meet these goals we will have a better understanding of when they will be coming home.

Body Temperature: Alexander still does not have enough body fat and muscle to keep him warm. His body temperature is still too low. He is currently sleeping in what they call an “isolet” which is this plastic aquarium like structure that is heated to keep his body temperature up. Until he can maintain his own body temperature, he cannot come home.

Food: This is the biggest struggle right now. Before they teach the babies how to drink milk from a bottle, they have to make sure that the babies’ stomachs can digest the milk and that their renal and digestive systems are all in working order. To do this, they are administering food through a tube that runs directly into the stomach. Once some food is given, they reverse the process and find out how much of the milk they put in is still sitting there. This tells them how well the babies are handling the feeds.

Neither one of the boys seems to be progressing well down this path. They are both on what is called "continuous feeds", which is where the milk is delivered in a constant drip into the stomach over a continuous period of time (like four hours at a time). This is not ideal, but it provides the food necessary to the body while allowing the system to digest a little at a time as it finishes developing.

Anthony had a setback this past weekend. His stomach slowed down on digesting his milk and it starting coming back up his esophagus (they call it “reflux”). This caused his throat to instinctively close off to keep him from aspirating the milk and he would just quit breathing for stretches of time. This causes his oxygen levels and heart rate to drop off suddenly (to the alarm of his Mother). For this reason, he is back on oxygen until they can get the feed levels right.

The goal, obviously, is for the babies to be able to take a large amount of milk at one time and be able to process it completely before the next feeding. Once the babies can do this, they will start “nippling” which means they will feed them through a tube while giving them a nipple to suck on. This will teach them the connection between a nipple and a full belly. Once they are nippling well, then comes the time when they will be drinking from a bottle only. Once they are able to drink at least eight ounces of milk a day from a bottle and keep it down, they will be just about ready to come home.

Wait and Pray

So, that is where we are. We go and see the babies every day. There are a few hours a day that the babies have “touch time”. This is the time, in between stretches of well needed sleep, that the babies can be picked up, held, have their diapers changed, etc. We visit during these touch times and do as much as we can to feel like part of the process.

The truth is that there is nothing we can do at this point but pray and wait patiently as their little bodies develop one little baby step at time.