Update - and a new accessory

It has been a while since I last updated, and I feel like a lot has happened since the last time I wrote. Maks passed the 6 month mark, which was truly amazing! I can honestly say that when he was born I wasn't sure he would. Maks rolled over for the first time two weeks ago, and he is now a back-to-belly-only rolling machine. One day he will figure out how to get back over, but until them, I am honestly enjoying helping him out. :) He is also officially off oxygen as of just over one month ago, and all of the equipment is out of our house! We love this freedom! Wahoo!

Maks has been growing and developing very well. In fact, at his eight month checkup, his pediatrician honestly just seemed in awe of how well he is doing. At eight months, Maks weighs 12 lbs 14 ounces and is 24 3/4 inches long. This puts him nowhere near the charts for his actual age, but he is in the third percentile for his corrected age. What really matters is his growth curve, and his is looking great! At this point, we have no concerns about how he is growing, and that is great news!

He is very smiley, happy, and easy-going. He is honestly the best baby in the world. He has been meeting milestones such as rolling over, smiling, cooing, and standing, but is lacking in a few areas sun as being able to reach for and grasp toys. At six months, Maks had his first appointment with the pediatric optometrist, Dr. Lisa Porter. We were pleased to learn that he appeared to see well and did not demonstrate the need for a prescription. I had some concerns about his vision at that time, but nothing really concrete to base them on. I just always have felt that when I look at other babies in person or even in pictures, they seem to actually SEE more than Maks. They look more intently at things and seem to focus better. If you see pictures of Maks, he is never looking at the camera or the photographer. To give you an idea, here are some pictures I took of him on his 8 month birthday. Notice him focusing on his hands and the monkey, which are all really close to him.











Over the past couple of months since we first saw the optometrist, Maks has developed a crazy interest in his hands. He thinks they are the coolest things in the world. He has no idea he has feet yet, but his hands are totally cool. He looks at them, turns them around, and studies them like most babies do. This fascination has been cute for a while; however, I started noticing that it was not going away. He didn't master that fascination and move onto exploring something else. He is ALWAYS looking at his hands. I began to get worried about this and all of the possibilities of what it could be. I also told myself several times that I was overreacting, and that it is just probably a delay due to his prematurity.

A couple days ago, he had a dilated exam with the retinal specialist to see how his retinopathy of prematurity was doing. I was very pleased to learn that the integrity of the structure of his eye remains sound. The macula and lense were preserved by the laser surgery, and they have continued to do well. I decided to ask Dr. Romriell about his thoughts regarding my concerns. He brushed it off and basically acted like I was overreacting. He said he remembers seeing his boy look at his hands and study them a few times when he was little, and the doctor thought it was cute. I thought to myself, "but he got over it. Maks can't get past them." The doctor also told me that if I wanted to schedule an appointment with the optometrist in a couple of months to get it checked, that would be reasonable.

Well, apparently that advice wasn't good enough for this momma. I decided this was a problem that I felt needed addressed, and I had pushed it aside for Long enough. I called and spoke with Dr. Porter that day and told her my concerns. We went ahead and scheduled an appointment for Friday (today) to have another exam.

At the appointment she asked me about everything I had been seeing with him and what exactly my concerns were. She asked questions to me like, "does he watch you and follow you from room to room." Of course I had to say no. He has never been able to see me that far. In fact, the other day, I was sitting next to Logan on the couch, and I yelled Maksim's name and began waving my hands. Maks immediately turned his head to the sound, but his eyes never found me. This was nothing new, as it has always been very difficult to get his attention.

Now, don't get too worried or overreact. I know Maksim can see. He smiles at me and coos at me, and he likes to look at himself in a mirror, as long as these things are about an arm's length away from his face. I am comforted in knowing that he has very useable vision and that what he lacks should be easily corrected with lenses

After the exam today, it was determined that his prescription is only about a -2.5, which is not too bad. I have definitely heard of much worse. Apparently prescribing glasses for infants can be slightly risky. I have not had time to do all of the reading on it yet, but I believe it has something to do with the fact that their eyes are still developing and growing, and you don't want to stunt any of that by prescribing too much or too soon. Because of this, the optometrist will give him lenses with a prescription of -2 to give his eyes some time and room to grow. We tried on some of the bendy, twisty, silicone glasses today, which are basically indestructible. I'm definitely nervous about him having them, especially so soon, but hopefully he will easily learn that he can see better with them on, which will encourage him to want to wear them. I also hope that correcting his vision and increasing his visual bubble will help him learn to explore the world better and have more motivation to reach for and play with toys, as this is something he currently does not do, most likely due to his inability to adequately see them.

Here are a few recent pictures!

These are the pair of frames we used to fit Maks for his glasses. His will be blue.



Working on rolling over! It's pretty exhausting sometimes! :)


At dinner sitting on daddy's lap.


7 month comparison picture.


6 month comparison compilation.



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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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May 16, 2013

A lot has happened in the month since I last posted. I hardly have time to take myself to the bathroom these days, let alone blog, but I had today off from work and decided it was time for an update. Maks had his eye surgery on April 18. Despite frantic efforts of signing papers and having documents sent for review, we were unable to get a second opinion at the Moran Eye Institute in Salt Lake City soon enough without risking further damage to Maksim's vision. However, Logan and I feel confident that we made the right decision of doing the surgery when and where we did it to preserve as much of Maksim's functional vision as possible. If we would have waited, even a couple of days, damage would have most likely been done to his macula and lens, which damage cannot be repaired. Although he lost some of his peripheral vision, what he can see, he should be able to see well.

His surgery was done in an isolation room at the EIRMC NICU by Dr. Eric Romriell, a retinal specialist. It typically requires at least a 24 hour hospitalization stay, but Maks ended up having to stay two nights, mainly because he had a hard time coming off the ventilator and out of the sedation well enough to eat on his own. It was a rough two nights! Seeing him intubated, ventilated, and being so closely monitored brought back so many emotions I thought I would never have to experience after he left the NICU the first time. It was also interesting having him back in the NICU after having him home, because I now felt like, as his mother, there was truly no one who could care for him better than I. When he was there before, I knew he was in good hands with the doctors and nurses, but now I hated to leave him because I know him best. I don't really know how to explain it, but I sure didn't like him being there. Here are a few sad pictures. His poor little eyes were so swollen after the surgery. :(








Maks has follow-up appointments with Dr. Romriell every two weeks, and when he is 6 months old, he will start to see Dr. Porter about corrective lenses.

After the surgery, Maks had a couple of really good oxygen days. It's almost as if the ventilator opened his airways and gave him a little boost. I was so encouraged and hopeful that we would be able to kick the oxygen very soon. The occupational therapist came, and she actually made a goal to have him off of it by May 25. Maks had a couple days in a row where he was on 1/64 of a liter only some of the time, then I was able to take it completely off for most of the day. I even took him to the doctor and ended up having it off most of the time there because he kept high satting. This makes me sad just thinking about it because I was just so excited. It wasn't too long after that doctor's appointment, though, that he started requiring more and more oxygen. He still hasn't bounced back and is requiring 1/8 to 1/16 most of the time.

Maks continued to have the feeding tube after the eye surgery. This started to become very stressful for me to count every minute and every milliliter at every feeding. I just kept thinking how much I missed the ease of breast feeding Milyn. After finally becoming fed up with scrutinizing everything, I decided to switch his bottle type to something without all the milliliter markings on it. For some reason, it just made me feel better and less stressed. I got out the bottles we used with Milyn. They are the Playtex VentAir bottles, and we happened to have the rapid-flow nipples. This change has made all the difference! Maks pulled his feeding tube out a couple of weeks ago, and I haven't had to replace it since! Hopefully it is gone for good!

Unfortunately, I finally had to give up on pumping, and I am having a major guilt trip about it. With work and the two kids and all of Maks' appointments, I just literally do not have the time to pump and feed him. Luckily, I have a deep freezer full of breast milk, and it should last at least a couple more months, but I wish I would have been able to do it for the full first year. As hard as breast feeding was for me with Milyn, I stuck it out the whole first year, and I would give anything to be able to with Maks.

On Cinco de Mayo, Maks turned 4 months old. It is pretty remarkable to see his growth and change! At his 4 month check up, he weighed 7 lbs 8 oz and was 19 1/4 inches long. Just look at his new comparison pictures!





Maks has had bilateral inguinal hernias since he was born. We have always known we would most likely have to get them surgically repaired, but we had hoped it could wait until Maks was much bigger, stronger, and off the oxygen. Well, that darn left hernia has sure been giving him grief. I noticed last week that it was starting to look more pronounced, and when I mentioned it to his pediatrician, he agreed. He had me set up an appointment with St. Luke's pediatric surgery for a consult. Since my brother-in-law, Mark, works there as a nurse anesthetist, we asked him for a recommendation. Luckily, we were able to get an appointment for a consultation on May 23 and for surgery on the 24th with the surgeon he recommended.

Unfortunately, last Friday, that left hernia became irreducible, and Maks was in a lot of pain and throwing up. We ended up having to take him to the ER because the pediatrician was worried it was incarcerated. The ER doctor finally got it to reduce, and he told us we should get to Boise early in the week to see if they could do surgery. He didn't think we should wait until the 24th.

So, we packed everything up, left Milyn with my parents, and headed to Boise on Sunday with no appointment, but with a prayer that we could get one Monday morning. We were shocked when we called the office and got one with Dr. Curnow, who is the surgeon we originally scheduled the surgery with. When he saw the hernia and learned that we live 5 hours away, he said it needed to be taken care of that week. Unfortunately, when he said that, he thought we were already on the surgery schedule for that week. When the nurse told him we weren't, he said he wouldn't be able to fit us in until our previously scheduled surgery on the 24. He basically said that we should push the hernia in with every diaper change and pray that it didn't become incarcerated or strangulated before the surgery date.

The surgeon also told us that because Maks is a micro preemie and still so small, there is a risk of compromising the circulation to the testicles because his blood vessels are so tiny. Therefore, he will only operate on the problematic hernia now and will wait until September or October when Maks is bigger, to fix the other one in an effort to prevent potential damage to both testicles. This means we have yet another surgery to worry about and another setback to prepare for. Hopefully, the bigger he gets, the smaller the setbacks become.

So, we had to take our sad little baby back to Idaho Falls and will have to make the trip again next week. I should have anticipated the toll the traveling would take on Maksim, but I indefinitely wasn't prepared for it. Since the trip, Maks has been very exhausted and has been sleeping a lot. He has also required even more oxygen, and he continues to drop his oxygen sats down into the 60s and low 70s several times throughout the day. This makes for a lot of beeping and a lot of headaches. It is sure hard to get much work done during the day and much sleep in during the night with all of the beeping. The frustrating thing about it is that he drops way down and beeps for several seconds, but then he picks back up to the nineties, so turning the oxygen up doesn't really help much. He has been able to self-recover without any stimulation, so that has been good. The other day, after trying to work through a migraine from it all, I finally turned his oxygen up a notch, and simply turned the monitor off. I don't usually do that, but I just couldn't take it any more, and I welcomed the silence!

Maks had an echocardiogram today. Dr. Anschutz ordered this to be done at four months of age when he originally discharged Maks from the NICU. All of his other echoes have been good, so I have little reason to assume that this one wouldn't be; however, for some reason, I am worried about it today. Maybe it is because as Maks is gaining weight, he should be gaining lung tissue, and I feel like his oxygen requirement should be decreasing instead of increasing like his has been.

I have no idea what exactly the radiology technician was taking pictures of and what he was making note of, but every little thing I saw made me paranoid. With every test that is done, there is a risk of finding out something else that is wrong, and it is just stressful. Hopefully it is just me, and everything will be fine! The cardiologist was going to read the echo this afternoon and send the report to the pediatrician, who will review it with me at Maksim's appointment tomorrow.

On a different note, I was able to get my work schedule changed, so I now work Saturday through Wednesday! This means I have Thursdays and Fridays off, so I can schedule all of Maksim's appointments on days that I am not working. This helps my work days a lot, because my work isn't interrupted by trying to get to appointments, but it sure does make for one exhausted Shalee. For now, it seems like the appointments are never-ending because more things just keep coming up. Hopefully it will eventually get better as Maks gets bigger and stronger.

Now that I got out all of my frustrations, I will end with some recent pictures! There are some of Maksim with his new cousin, Payton. Good night everyone!











He is always holding onto his tubes. I'm not sure what he will do when we finally get rid of that oxygen! :)


My beautiful Milyn has started curling her upper lip when she smiles. What a cutie!


Thank goodness for a swing set!
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April 15, 2013

What a tragic day today in Boston as two bombs exploded at the Boston Marathon in an act of terror. I cant even imagine all the horror at that scene. Prayers to all of those affected by this tragedy.

Last week was a busy week full of lots of running from appointment to appointment. Maks had his first eye exam since being home last Monday. It was pretty exhausting for him, but we were encouraged to find out he was still showing growth into his peripheral vision.

We have loved having Maks home, and I am so grateful to be able to snuggle with him and love on him whenever I want. He is awake more, and I can't imagine him being so awake and alone in the cold NICU! I also think it is good that he has the consistency of Logan and me. Here are a few pics from the week:








The rest of Monday and into Tuesday was pretty rough for Maks. He got so worn out from his eye exam and doctor's appointment in Monday, and he just didn't have the energy to eat. He lost weight when home health was here to weigh him, and we ended up having to go to the NICU to get the feeding tube back in. That was a setback that was kind of upsetting to me, but I knew it needed to be done, and it has definitely helped him gain strength and gain weight.

Friday was my due date. I remember the day Maks was born, thinking that April 12th seemed so far away. I can't believe it has now come and gone. Maks weighed 6 lbs that day, which is probably pretty close to what he would have weighed if he had been born that day. He really has come so far.

Maks was doing well eating the past couple of days. We we have only had to use the feeding tube a couple of times a day if he got too tired when eating. He has also been doing well with the oxygen, and he is usually only on 1/32 of a liter. Unfortunately, Maks had another eye exam today that has really done a number on all of the progress he made last week. He hasn't eaten well since the exam, and his oxygen sats are all over the place. He is on 1/8 of a liter right now and is still fluctuating.

The eye exam also wasn't that encouraging today. The growth into the periphery has significantly slowed, and the ridges are more pronounced and beginning to pull. Maks is scheduled for laser treatment on Thursday to prevent any damage or blindness. The ridges haven't quite made it into zone 3, so he will lose quite a bit of his peripheral vision.

It turns out this surgery is a pretty big deal for these little ones. Maks will have to be hospitalized and intubated, which I'm sure will only add to the setbacks we have had this week. I'm not sure how long he will be in the hospital. We will talk to the hospital tomorrow and hopefully get some answers

We have been pleased with Dr. Romriell so far, but because of the nature of the procedure and what is at risk, we have decided to contact the Moran Eye Institute in Salt Lake for a second opinion; however, if we can't get in to see them this week, we will probably just go with the procedure here because we are afraid of waiting too long due to the potential for retinal detachment.

To complicate things a little, I started back at work today, and Milyn spiked a fever again yesterday due to her tonsils. To say we are going a little crazy at our house would be an understatement! We continue to pray daily for more strength and miracles!


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3 months old!

Maks was officially 3 months old on Friday! He weighs 5 lbs 11.5 oz and is 17 inches long. He is our little micro baby. Here is his 3 month comparison picture. He is getting so big!


He is doing pretty well at home. I am a little frustrated that the doctor sent him home this soon, however. I think he really could have benefitted from a couple more weeks in the NICU. The biggest reason I feel he should still be in the NICU is his eating. He isn't eating and gaining weight as much as he should be. He just gets so tired. In order to get in the recommended 150ml/kg/day, we were having to feed him for 45 minutes to an hour, which is useless because he was just using up all of the calories he was taking in. I decided to take a new approach and feed him for 20-30 minutes and see how much he can get in and see if it will help him gain more weight. He is, surprisingly, eating a little more because he has more energy.

My cousin Haley Basil from Aspen Home Health came on Monday. They will come twice a week for several weeks to weigh Maks. We also had a couple of appointments with the pediatrician this week. Dr. Anderson is also concerned about Maksim's weight gain, and depending on how much he weighs tomorrow at his appointment, they may decide to put a feeding tube back in. As difficult as that may be for a while, if it will help Maks grow and get stronger sooner, we will make it work at home.

As far as his oxygen goes, he is currently on 1/8 to 1/16 of a liter regularly. He had a good day yesterday, though, and he was down to 1/32 for a couple of hours.

Maks has another eye exam tomorrow. That should be an ordeal for me trying to get him there by myself. These were definitely more easily done in the NICU! We are praying it goes well.

Life with two kids is definitely different, and because of Maksim's extra needs, life can be very challenging and discouraging sometimes. However, my father recently reminded me that up until the past couple of months, my life has been pretty uneventful with no major trials or struggles. Maks' birth has been a learning experience and eye-opener for me. I have much to be grateful for, and I am trying to remind myself of that. I am so grateful for a living, beautiful, miniature three-month old, and vibrant two year old, and as much as they sometimes stress me out, I can't imagine my life without them. Hopefully I can somehow figure out how to survive working and being a mom of two kids, so I can enjoy these little bundles, because as difficult as life is right now, the time will pass, and they will grow up.

Here are a few pictures of the last week.











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Day 86 - Welcome Home, Maksim!!!

Happy Easter Sunday! Eighty six days later, at 5 lbs 7 oz and 17 inches long, we finally brought our Maksim home! Milyn was so excited to meet her little brother for the first time, and we finally got our first family picture!





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