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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June 1, 2013

I seriously can't believe it is already June! Time is just flying lately, and summer will be over before we know it. To follow up with my last post, Maksim's echocardiogram results were great! It showed no pulmonary hypertension, no PDA (patent ductus arteriosus), and a small PFO (patent foramen ovale). The PFO will hopefully close on its own soon. Everything else looked healthy and normal. It was a huge relief!

Before I get started on the hernia surgery, here are a few pics as of late. The first is of Milyn earlier this week. Poor girl got a sty in her eye and looked like she had been beaten up! I also took one of her new haircut! And then there are a couple cute pics of Maks without his oxygen on after a bath.














We headed to Boise for Maksim's hernia surgery last Thursday, and surgery was scheduled for 8am on Friday, May 24. We arrived at St. Luke's at 6am and waited and waited. We finally got into the pre-op room about 7:45, and about that time the surgeon came in to tell us that he had an emergency surgery that he needed to do before Maks', so surgery wouldn't be until 11. Maks is so easy-going, but the poor kid got so hungry. He hadn't eaten since 3 that morning.

Dr. Curnow finally finished his surgery and came in the room to talk to us about the procedure. He said he was excited to see us. If you remember from before, we were very frustrated as to why he wanted us to wait until now to do the surgery when we were already in Boise the week prior. It turns out he went to a conference in Spokane, WA the Thursday before Maks' procedure was scheduled and learned a new technique of performing the hernia repair. It is a laparoscopic version that eliminates the risk of compromising circulation to the testicles. It also has a very low recurrence rate. The best part was that they would be able to fix both of his hernias and eliminate the need for another surgery. The surgeon was excited to see us because he knew he would be learning this procedure and that Maks was a good candidate who would benefit from it.

So, he just learned this procedure, and he had never performed it before. Maks would be the first ever laparoscopic hernia repair at St. Luke's. I was somewhat leery of this, but he is the best pediatric surgeon in the state, and Logan and I felt confident in his skills. I was also comforted because I felt like God was watching out for us before, and this was the reason we needed to wait for the surgery. It sure makes you feel like a complete idiot when you doubt The Lord's hand in your life, when, with just a little time and patience, His plans start to reveal themselves.

We also spoke with the anesthesiologist. He said he was going to do the best he could to avoid giving Maks any IV narcotics. He would use a procedure called a "caudal" which injects medications into the caudal portion of the spinal column. He said he was hopeful that it would work, but micro preemies often have a small caudal space, and it may not be possible. He also said, even if the caudal was successful, if Maks' blood pressure or pulse became too elevated, IV narcotics may still be necessary.

We were so pleased to find out, at the end of the surgery, that the caudal was successful and that Maks required no IV narcotics. I can't even begin to say how much of a difference this made! Maks came out of this surgery so much smoother than his eye surgery. He didn't have the sedation in his blood stream, so he quickly came off the ventilator and was breathing on his own with no episodes of apnea or bradycardia. He also had plenty of energy to eat, so no feeding tube had to be inserted.

Here is a pic of him after his surgery. He had four small incisions: one in his belly button and the three along his lower abdomen. He also had a needle puncture site in his left upper abdomen where they filled his abdomen with air for the procedure. You can tell he still has quite a bit of air in his belly in this picture.





After the surgery, Maks stayed in the post anesthesia care unit until he was able to eat on his own. This was only an hour or so. He ate great and was transferred to the pediatric floor. This was the beginning of a very long night for Logan and me. Maks was a champ, and he was a pretty happy baby for most of the time, but he had some pain, and he definitely had a hard time sleeping. I ended up sleeping a good portion of the night in the crib with Maks to help him stay comfortable, and Logan had just a few cushions to sleep on. We survived, though, and we were so ready to leave first thing Saturday morning. Unfortunately, Maks was a little swollen and tachypneic, so Dr. Curnow ordered a single dose of IV Lasix (a diuretic) to be given, and said we would have to wait until at least 1pm to leave.








We were so relieved to get out of the hospital, especially knowing we wouldn't have to come back for another hernia surgery! Thank goodness my good sister, Lindsay, shared her home with us so we could have a comfortable place to stay that night before heading back to Idaho Falls. I am also thankful for her good husband, Mark (a nurse anesthetist at St. Luke's), who recommended Dr. Curnow, and made sure a good team of pediatric anesthetists and anesthesiologists were present for Maksim's surgery.

Maks has been doing very well since the surgery. He travelled well to and from Boise and didn't suffer any major setbacks. He is even maintaining his oxygen tremendously well. He has been on room air while he has been awake for at least the past 3 days, and he has only been requiring oxygen when he sleeps and when he travels in his car seat. We are cautiously hopeful that this will continue, and that he will soon be off the oxygen and monitors for good!

I can't thank everyone enough for your prayers. I know they are being heard, and I know that God is watching out for our little Miracle Maks. He has beaten so many odds, but he still has so many difficulties to overcome. As I work with occupational therapists and doctors and vision specialists, I am overwhelmed by all of his "disadvantages" and "developmental delays." Raising a micro preemie is so different than raising a healthy baby. I remember with Milyn how I was amazed at how advanced she seemed to be. She always seemed to be doing things months before she was expected to. Instead of being excited as new milestones come, I am constantly having to watch to see if Maks can even do the minimum expected for his corrected age (age based on his due date), let alone his actual age. I still keep thinking "I just don't have time to be a good mom to a micro preemie." I feel like I need more time to be able to devote to helping him reach his milestones. He needs so much attention and encouragement, that it is easy to get overwhelmed. Every time the therapist comes, I feel horrible because she is always giving me more assignments or little things to remember to do with him, and I just know I can't do it all.

Things are just different this time around, that's all. I know things will come with time, but in the meantime, the watching, and waiting, and comparing are stressful.

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