So Many Questions

My son is a micro preemie. According to the latest statistics from the National Center for Health Statistics, 0.1% of total babies born weigh 500 grams or less at birth, and babies weighing between 500 and 600 grams have a 20% chance of survival. My son is a miracle, but he is not like every other 5 month old, and he is not even like every other 2 month old. He has had, and he continues to be faced with, challenges that set him apart from his peers.

Differences bring curiosity, and curiosity brings questions. I can definitely understand and appreciate this, as I am one of the most curious people I know. Updating this blog daily helped keep people in the loop about Maksim's progress, which decreased the curiosity. Perhaps one of the biggest drawbacks to not updating it regularly, is the lack of information available to people regarding Maksim. Because of this, I am often overwhelmed by the many curious questions I get from well-meaning people regarding him and his progress.

I have decided to write a post detailing what I know about micro preemies and the disadvantages they face, as well as the latest information on Maksim's progress. By doing so, I hope to answer many people's questions.

First, I will talk about milestones. Milestones for micro preemies are based on their "corrected age." This is the age based on their due date. Maks was due April 12, but because of my diseased placenta, he had an IUGR (intrauterine growth restriction) that caused him to be several weeks behind in growth and development. Nevertheless, based on corrected age, Maks would be 7 1/2 weeks old right now (compared to his actual age of 5 months). The eye and hernia surgeries also caused setbacks for Maks in terms of milestones. We are hoping to see more progress with these out of the way.

Maks currently weighs 9 pounds, which is a whopping 8 times his birth weight! Although he is still fairly small, he is growing well and has a good-looking growth curve. At first glance, Maks looks like a healthy newborn baby, but because of his prematurity and the amount of time he spent in the NICU, there are some differences. Some of the questions I get are often in regards these differences:

1. His flat head. Maks spent three months in the NICU laying in an incubator. A healthy, full-term baby gets to spend those three months in their mother's uterus, basically swimming, with little resistance and gravity. The NICU does their best to rotate the babies at regular intervals, but Maks has always had a preference. The right side of his head is much flatter than the left. Currently, we are working with positioning him in different ways using a rice bag to distribute his weight and reduce pressure on that side. These efforts are complicated by his strong preference and his weak muscles. Tummy time for Maks is not easy. At two months, a baby should be able to lift his head off the ground to at least a 45 degree angle. Maks struggles against gravity to lift his head at all, and although we continue to work with him, progress has been slow.

2. His hemangiomas. A hemangioma is an abnormal collection of blood vessels that appears as a bright-to-deep red mark or nodule on the skin. Maks has three hemangiomas: a tiny one on his right thigh, a dime-sized one on his back, and a very large and noticeable one on his neck. Because of its location and appearance, the one on his neck attracts the most attention and brings the most questions. It is at least a quarter-size in diameter and is nodule-like. It is deep red in color and has a large scab in the center. Although it is not characteristic for hemangiomas to be painful, this one is very painful for Maks. His collars and oxygen tubing often rub against it, and if you accidentally brush it when you pick him up, you will hear the saddest little cry ever. Logan and I believe this is one of the contributors to his preference to look to the right, as it is located on the left side of his neck and brushes the floor when he turns from side to side.
Hemangiomas typically grow for the first five months of life, then they stop growing and eventually involute, cut off their own blood supply, and slowly begin to fade. They are typically no longer noticeable by age 5. Treatment is risky, so unless they interfere with breathing or vision, treatment is not recommended. Due to their vascular nature, attempting to cut them off would result in severe bleeding. A new treatment using propranolol, a beta-blocker, has recently been used, but this often causes dangerous hypoglycemia in little ones, not to mention messing with the electrical chemistry of the heart. Pretty much, we just wait for it to go away and hope that it doesn't start to bleed either spontaneously or as a result of trauma, as we were told such bleeding would probably result in a trip to the ER.

3. His vision. Maks has an appointment with an optometrist next month who will determine whether or not he will need glasses, but at this point, we still don't really know what he can see. Right now, he seems to see best when looking to the right, which isn't a surprise considering he faces that way the most. When I see other new babies, I am surprised at how open their eyes are and how much they seem to actually be looking at objects. Maks doesn't seem to focus that well on objects yet. A milestone he should be meeting is a social smile. If I am holding him in front of me and talking to him and smiling, he should be smiling back. For some reason, I can't really seem to get him to focus on my face looking at him straight on. Today I did notice him smiling at me in response to my smile from the right side. I loved every minute of it. I am anxious to hear what the optometrist has to say next month.

4. His sleeping habits. Micro preemies sleep a lot, and Maks is no exception. This is good sometimes for a work from home mom, but it definitely limits the amount of time he has to work on meeting milestones. I'm not really sure if this is something that typically continues for a long time, but for now, Maks does still sleep most of the day.

5. His exploration. The occupational therapist said something last week that I had not thought of. She said that self-exploration comes before exploring other objects, and full-term babies get lots of time to self-explore because they are in the fetal position for so long. They learn about their hands and their feet, and their face and their head because they are able to touch them all the time. A baby lying in an incubator doesn't have those same opportunities because he is typically lying flat. Because of this, tiny preemies have to learn how to self-explore before they learn about other things. This is pretty evident with Maksim. He isn't into looking at and grabbing other objects yet, but he is starting to put his hands in his mouth and up to his face a lot. His hips are extremely tight, and unlike most babies, there is no way to get he feet up to his face. We are working on stretches to improve this, and we are noticing definite progress because diaper changes aren't as painful for him.

Maks is progressing well, and although he is slightly behind his peers, the therapists are always positive about his progress. He truly is a miracle, and I hope everyone can see that. I hope I have answered many of the questions that people have about him and his progress.

Before I end, I have to post his 5 month comparison picture. I can't believe he is five months old!


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