Happy Birthday, Milyn!

Well, despite all efforts, we ended up spending Milyn's birthday at the hospital. However, Milyn has no idea that today is December 8th and her birthday! Ha! We plan to celebrate the first day home from the hospital. I still can't believe that she is 3! She is such a sweet big sister, who is so protective of her baby brother. I will never forget what she said as I took the picture below of her hugging Maks. She's aid, "I gotcha, buddy." It was so tender, and I know she will always be his biggest fan and most fearless protector. Happy Birthday, Mi!


Maks has had a good couple of days. His lungs are finally sounding consistently clear, and his oxygen requirements have slowly gone down. They are weaning him slowly from the vapotherm, and he is currently at 2.5L and 25% fio2. On Thursday, when they first attempted to remove the vapotherm, he was at 2L, so I am definitely nervous to see how he handles it this time. I am sure they will have him off the vapotherm sometime tomorrow, I am just not sure how long it will last. Hopefully his airways stay open, and don't collapse, cause more coughing fits, and take us back to square one again. If he can make it off the vapotherm successfully, we should be able to go home shortly after that. So now we watch and wait. Please pray that his lungs are stronger this time than on Thursday and that he can successfully be weaned to just the wall oxygen!

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Friday

Maks continues today on the vapotherm. He is on 4L and 40% right now, but he has been up to 4.5L and 65% today. The day started out okay. The doctor determined that he did, in fact, aspirate, and his lungs were full of crackles and rhonci, but he was maintaining his sats okay with the vapotherm. I have no idea why the doctor decided to try to wean him from the vapotherm again today when his lungs were still full of crap, but this morning, he gave the order to decrease the flow to 2L. That wasn't very long before I started noticing a change, and when the respiratory therapist came in, I asked for her opinion. After listening to him and seeing his sats, she agreed, called the physician, and got the order to turn it back up to 4L. The doctor said he wanted to see if his lungs would tolerate it, but I think it was just way too soon to even try.

After trying to wean him, Maksim really struggled. He hardly ate anything this morning because he was just too tired. He slept for almost 5 hours in my arms, and his sats kept dropping even with every attempt to turn up his oxygen. His lungs remained crackly and he developed a wheeze. More breathing treatments were done, and when he woke up and started breathing deeper and moving around a bit, his sats started improving. He got down to the 4L and 40% while he was a wake, but now that he is falling asleep again, his sats are dropping. His ear infection has also gotten much worse (he has had it for almost 2 weeks), so today they switched him to his fourth antibiotic. This time it is augmentin, which is known for causing bad diarrhea, so now the poor kid has yet another thing to deal with.

Right now it feels like one step forward and two steps back, and that we will
never catch up. He has gained a few ounces over the past couple of days and is back up to 14lbs 6 oz, though, so that is good. I just feel like none of the pediatricians here really know how to handle a sick baby with chronic lung disease. I'm sure they see some in the winter months, but for the most part, it seems like everything they are trying is a crap shoot to "just see" if it will work. I wish we lived in a big city with a children's hospital and a pediatric pulmonologist!

I pray that Maksim will have a good night and a better day tomorrow. Yesterday was his 11 month birthday, and I can't believe it is just a month until he is one year! Hopefully we can avoid a hospitalization for that birthday!


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Roller coaster

I guess my heart and mind have forgotten what a roller coaster ride it is to have a baby in the hospital, especially a fragile baby such as Maksim. This morning started out great, so great that the doctor planned to discharge Maks this evening. He even got Norco set up to bring the oxygen and monitor to the hospital. We were ready to go!

Maks was taken off the vapotherm around 10 this morning, and initially he was tolerating it very well! His sats were in the high nineties for quite a while. As soon as he went to sleep, he started dropping, so we put the regular wall oxygen back on him, and that helped bring them up.

After just a couple hours of being off the vapotherm, Maksim started coughing again, and he was coughing a lot and bringing up a lot of mucous. The nurse and I were constantly suctioning him because he can't expel it on his own. Around 5 tonight, he had a very scary coughing fit that included vomiting up a lot of mucous. The coughing lasted several minutes, and it was like he just could not catch his breath. It was very scary to see him like that. I finally got him calmed down a little, and immediately his sats were dropping and his lungs were full of fluid. The doctor and respiratory therapists were concerned he had aspirated, so they ordered another chest X-ray to see if there was evidence of pneumonia. In the meantime, he was placed back on the high flow vapotherm for more breathing support.

He has continued with the horrible-sounding cough, but it has calmed down a little. The X-ray came back negative for pneumonia, but it showed right-side atelectasis (collapsed lung space). He will continue with the vapotherm to assist in reinflating his lung.

I now have no idea when we will be leaving, but it won't be for at least a few more days, and I am so terrified now for them to try to take him off the vapotherm again. I am afraid we are just going to go through the same thing every time we try. He was doing so well yesterday and this morning. It's just very discouraging and very scary. I have no idea what to expect with his chronic lung disease, and I am starting to worry that neither do the doctors. At times like this, I wish we lived much closer to a children's hospital!

To top off this day, Milyn has come down with some sort of illness. She has thrown up 6 or 7 times tonight. I am trying to convince myself it is food poisoning because she has been a round a lot of people lately, and I would feel awful if she is contagious, but I guess there is a nasty bug going around with lots of vomiting. :( Logan has also had a migraine all day, and I have developed a cough. When it rains it pours, and we're sure looking forward to the rainbow!


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A better day!

Today has been a much better day for Maksim! The intense chest percussion therapy and suctioning last night really helped. He ended up going through most of last night on vapotherm settings of 4L at 50% fio2, so he was able to come down from the 60%. I was so grateful and relieved for that. He has also been much less lethargic today, and his lungs have been sounding more clear. He hasn't coughed as much, but when he does, it is still extremely loose and requires quite a bit of suctioning.

His lungs seem to really like the vapotherm, and he is now down to 3L at 40% fio2. It provides pressure that eases the burden of breathing and opens his airways and alveoli. He had been maintaining his sats really well today, and the stickers that hold the oxygen tubing on his face were coming off, so I gave him a break from the oxygen to switch those out. I don't think he had coughed all morning, but within five minutes of not having that pressure from the vapotherm, he started coughing a lot and producing lots of sputum. I am grateful for the pressure of the vapotherm, but I do worry a little about how hard it will be to wean him from it. They will get more aggressive with weaning him tomorrow, so we'll just have to wait and see.

While awake today, Maks was keeping his sats up very well, but every time he fell asleep, they would drop way down into the eighties, and we would have to turn the oxygen up. I have been pleasantly surprised that he has been keeping his sats up all evening, and since he has been a sleep tonight, they have not had to adjust the oxygen up at all! I believe he is on the uphill, which hopefully means we can get out of here sometime this weekend! Now that he isn't so lethargic, he is starting to get frustrated with being confined to this tiny crib. He cannot sit up on his own yet, so he has to spend the day rolling back and forth from his belly to his back. I think he misses his jumperoo!

Since he lost 5 oz yesterday, I have been making the nurses super-concentrate his formula to 24 calorie instead of 22 calorie. Unfortunately, he lost another 2 oz today. He is so far behind anyway, I just hate to see him lose this much weight. A week ago, he weighed 14 lbs 15 oz, and today he was down to only 14 lbs 3 oz. He did have a good day of eating, though, so I am hopeful that he will have at least a slight gain tomorrow.

Tomorrow is Maksim's 11 month birthday! I just can't believe we are getting that close to a year. As excited as I am for his first birthday, I am also extremely nervous. The holiday season and all these hospitalizations have started to bring back a lot of the memories and anxieties from his birth. This time last year, we were preparing for Christmas and to move into our new house. We were not preparing to have a baby, and in no way were we ready! God and Maksim had different plans, however, and I just have to believe that his purpose is great and that he was sent to us to help him fulfill it! God just couldn't wait to get this little miracle to us!


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Three-peat

Maksim has had quite the eventful and scary week full of ups and downs, and I figured I should probably hurry and blog about it before I forget it all. It all started a couple of Fridays ago when Maksim started vomiting. This occurred a couple times a day for a couple days, then progressed by Sunday. His appetite was pretty diminished, and by that Monday, he had also started having some diarrhea. Worried about his hydration status due to his poor urinary output, I scheduled an appointment to see a pediatrician that day. Fortunately, the doctor wasn't too concerned about his hydration, but he did detect a significant ear infection that required an antibiotic.

We went on our way hopeful that the next day would show improvements. Unfortunately, the diarrhea and vomiting worsened on Tuesday, as well as his urinary output and oral intake, so I took to the doctor again on Wednesday. After seeing him in the office, Dr. Anderson insisted on admitting him to the hospital for IV fluids.

I forgot to mention that on Tuesday night, he also began coughing. It didn't sound like a cough from his lungs, but he would cough and cough and cough and then gasp for air, so much that the first thing that crossed my mind was pertussis. Scary. I also told this to the doctor, so he wanted to order an X-day and respiratory infection panel with the admission to rule out dangerous infections.

So, this was definitely not how I planned on spending my eve before thanksgiving, but off we went to the hospital. Fluids were started, and they helped a lot. Maks only threw up once and had diarrhea once that day at the hospital. His chest X-Ray was negative for active infections, and the infection panel came back just indicating rhinovirus (the common cold). His cough continued to get slightly worse, but he was maintaining sats around 93%, so he was good to go home. We were blessed to be discharged fairly early on Thursday and got to spend Thanksgiving as a family at the Belnap house. My parents even got to join us!

The cough continued all through Thursday, Friday, and Saturday, and each of those days he had several coughing fits which resulted in vomiting up the little bit of food he had been eating, which was around half of what he usually eats. He only eats formula, so decreased food intake also meant decreased fluid intake. By Saturday night, he was vomiting and coughing repeatedly so much that he showed signs of respiratory distress, and after we tried all of the breathing treatments we have at home to no avail, we headed to the ER.

Once there, they did another breathing treatment, this time with duonebs, and also gave him some oral decadron. This seemed to help his cough calm down a little, but he was unable to keep his sats above 87%, so they admitted him for oxygen.

Here is where the story gets annoying. Once he got to the pediatric floor, they never put oxygen on him. His sats were around 87% throughout the night, and he had several drops into the low eighties and high seventies, but they never put it on! So, the doctor comes in the next day, listens to his lungs sounds over his clothes, and never observed for any retractions, and said "well, he didn't need any oxygen last night, so I think he should be good to go. I will send him home today." We questioned him about the oxygen, and he said he wouldn't send him home with it. Basically, he never assessed Maks, he just went off what the floor nurses said. His sats were 86-87% when she unplugged the oximeter. Why in the crap did they admit him for oxygen and never put him on it?!

I was furious the whole rest of the Sunday, partly because of the wasted time and money associated with a pointless admission and partly because I was mad at myself for not being more forceful with the doctor. He should have stayed and been put on oxygen like it was initially ordered.

Maks continued the forceful coughing and vomiting on Sunday and into Monday morning. I scheduled the earliest appointment with his regular pediatrician, but unfortunately was not able to get an appointment until 3pm. In the meantime, I called the unit manager on the pediatric floor and gave her an earful and requested an explanation for what happened. Still waiting for a response from her.

When we finally got to Maksim's appointment, he was pretty exhausted. He had started retracting and struggling more to breathe. The cough wasn't as forceful and frequent, but it sounded deeper, and when I listened to him with the stethoscope at home, his lung sounds were coarse.

At the appointment, I also gave his pediatrician an earful about our experience the day before. He listened patiently, and I was nice, but I told him he better never send Maks to the hospital again for anything that I can do from home, such as IV fluids or oxygen. He listened, then did his assessment, checked his lung sounds, then his oxygen sats. When he saw his sats were only 80% and his lungs were so coarse, he scooted his chair back, sat there for a minute, then said, "you are not going to be happy with me."

So here we are. We were sent to the hospital immediately from his office, and Maks was placed on vapotherm (oxygen which also provides positive pressure to help ease the burden of breathing) at 3L with 30% fio2 and around the clock chest percussion therapy (ie beating the crap out of his lungs), breathing treatments, and suctioning. He is also receiving antibiotics for the lingering ear infection and possible pneumonia, and oral steroids. The chest X-ray done yesterday came back showing no signs of active pneumonia, but showed hyperinflation indicative of bronchiolitis and of course evidence that he is a preemie white boy with bronchopulmonary dysplasia (chronic lung disease). The doctor said to plan on being at the hospital for at least the remainder of this week and maybe into next week. He also said it is possible he will be sent home on oxygen.





Last night and today have been very stressful. He started out on oxygen of 3L and 30% fio2 last night, and by morning, he was requiring 50%. He struggled this morning and was very sleepy and lethargic, but he seemed to perk up a little by late afternoon. He is starting the night tonight at 4L and 60% fio2, so I am afraid to even go to sleep because of fears of what he will be like when I wake up. He also lost several ounces of weight today in addition to the several he lost last week. He is now down to 14lbs 5 oz.

Having Maksim in the NICU was one of the very hardest things I have ever done, but since we have been able to finally be home as a family, there is such a void now that we can't all be together. One of us is always with Maks at the hospital, and I am sure Milyn is wondering why she is being left with others for so long. Not to mention her birthday is Sunday, and I haven't even gotten things ready for it. I hope and pray she knows that mommy and daddy love her!

I also pray for Maksim to get well and for me to have the faith for that to happen. I know this is just the beginning of our winter life for the next several years, and it scares me to death to think of having to see him like this so frequently, especially since something like the common cold has taken such a toll on his little body. Can you imagine if he actually did have pertussis?! I guess I better just toughen up and prepare myself, as all of the doctors have said it is inevitable. Our family has been on lockdown already since before October. We never go anywhere as a family, Maksim never goes with us to church, I work from home, Milyn doesn't go to daycare, Logan doesn't work around sick people or people in the community, we don't take him to dinner, we hardly have babysitters. I just keep thinking of everything we do and don't do to protect him, and I get discouraged thinking he still got sick.

We ask for your prayers and faith for him to get well and to stay out of the hospital as much as possible. Please pray for our Miracle Maks!

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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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Day 85

Well, we survived the transition room. It was a long and sleepless night that was very eye-opening for what we have ahead of us, but Maks did great. He ate well and did pretty well at maintaining his vital signs, but the monitors sure kept us on our toes and our eyes awake. Maks did have one episode of bradycardia where his heart rate dropped into the 40s. It was only for a second or two, and he came out of it on his own, though. It was very late, and I was very tired. I remember seeing the number, but I don't remember looking to see if the wavelength was showing an accurate reading or not.

If you remember from a couple of days ago, his last hematocrit was only 30. Because of this and the brady episode last night, Dr. Anschutz decided to keep him for at least 24 hours. He ordered another hematocrit to be drawn in the morning to make sure it is good before he is discharged to home. If it is 30 or above, Maks will go home tomorrow; if it is below 30, he will get a blood transfusion, then he can be discharged 24 hours after that. Anschutz said he almost hopes it is less than 30, so he can transfuse and "top him off" before he goes home; however, Maks' body should be making its own red blood cells now, so he also hates to give him blood and trick his body into thinking it doesn't need to kick itself in high gear. Anyway, we will just have to see what the test comes out as tomorrow.

Today was a hectic day, and last night was pretty exhausting, so Logan and I were definitely okay with waiting another day or two to bring Maks home. We want want him to come home, and we feel comfortable in our ability to care for him at home. we just want to make sure he is really ready. We also figured it would give us an opportunity to get a really good nights' sleep, so we are rested and refreshed when Maks does come home.

My mom and sisters and Tiana threw me such a cute and creative safari baby shower for Maks this afternoon. So much love and support was shown, and I can't thank everyone enough. We got so many cute outfits and toys for Maks. Lindsay and Hillary did such a great job putting this together, and I just had to take a picture of all of the cute decorations! Tiana made the safari cake, and Kylee made the diaper cake!












Logan and I did take advantage of one last night before bringing Maks home and went on a date to dinner. This will probably be the last time in a very long time we will be able to really go anywhere together. There are such strict rules and guidelines for micro preemies. We aren't even supposed to have any visitors at our house for at least 2 months. And then we are supposed to avoid people, especially crowds, like when shopping or at church, for a year. We better get really good at entertaining ourselves at home! Thank goodness for a swing set this summer! One step at a time! One step at a time! One step at a time...


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