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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Day 84

I had to work today, which I think was completely unfair. Luckily I got to do it while in the transition room in the NICU with Maks! It was just hard because I wanted to hold him and snuggle him all day with no worries. It was so good to be with him, though!


After I finished work, Maks had his car seat challenge. I had kind of forgotten about this, and I worried a little about it because if he doesn't pass, he doesn't get to go home, and they wait 24 hours to retest. Basically, Maks had to sit in a car seat for 90 minutes and have no bradys or desats lasting more than 20 seconds, or requiring stimulation. We are happy to report he passed!


He has also eaten pretty well today, and we are hoping he continues that through the night. We are finally at the point in our NICU experience where I honestly feel I can do a better job at caring for him and giving him the attention he needs than the nurses here can. I know it isn't going to be easy, and the staff here is fine, I just think it is time to go home!

I can't even begin to say how great it is to be holding my Miracle Maks right now as I am writing this blog post! I honestly couldn't hold back the tears as we started snuggling! We have had such a journey, and I have waited so long for this. I can't help but think, FINALLY!!

Logan and I have been looking through pictures this evening, and we found a couple of good comparisons. The first one is just after he was born(1 lb 2 oz), and the other one is a few weeks ago(around 4 1/2 lbs). Both pictures were taken of him in the same incubator. Look at the difference! He really was just so tiny!





Today he weighs 5 lbs 7 oz and is over 17 inches long!


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Day 83

What a whirlwind of a day!! During rounds, Dr. Anschutz said Maks has been doing so well he is ready to go home! What?! Can you believe it? I totally wasn't expecting that news today, or even this week. I will room-in with Maks starting tomorrow morning for 24 hours, then, if everything goes well, we will go home Saturday morning just in time for me to go to my baby shower! I still just can't believe it! We literally have nothing ready! I guess Dr. Anschutz wasn't kidding on Monday when he said we should get the nursery ready.

He will for sure be coming home with oxygen and monitors, and eye appointments, and doctor's appointments, and home health, and lots of other worries, but that doesn't take away from the fact that we are so excited to bring him home and finally have our family together.

He did pretty well today, despite having his eye exam this morning, which always kind of wears him out. He has had to have a couple of feedings given through his ng tube to save his energy, but I am hoping he has a good night and gets his energy back. The eye exam was okay. The retinopathy has moved out a little further into the periphery, so he will be followed by Dr. Romriell on an outpatient basis, and he will more than likely have to be lasered in a month or so. The Avastin is not being considered at the moment. From what the doctor says, it sounds like he is past the point of benefitting from it. So, we pray for continued growth and improvement.


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Day 82

Lots of exciting changes today, as we are starting the transition of getting Maksim ready to come home! The first thing that happened, was he was moved into the CCN (critical care nursery). This is a step down from the NICU, but it is still in the same part of the hospital. The "bays" for the babies are a lot smaller and less private, but hopefully we won't have to be there for too long.

They also changed Maks from the blended, vapotherm oxygen to wall oxygen. This is the kind of oxygen he will be on if he comes home with it, which is extremely likely, and we are planning on this at the moment. He seems to be tolerating it well. He is on either 1/8 or 1/16 of a liter right now (the nurse couldn't remember when I spoke with her this evening), which doesn't seem like much, but he still needs it to maintain his oxygen saturations above 92%.

They are also changing his feedings from breast milk fortified with a human breast milk fortifier, to straight breast milk 6 times a day and high-calorie preemie formula twice a day. This is also what he will be on when he comes home, in addition to the multivitamins.

Maks is still being a champ when it comes to eating his own bottles! He ate 100% yesterday and today!

Today someone asked me to give a refresher on some of the terminology I use on the blog. So, in case you were wondering, a "brady" or "bradycardia episode" is when Maksim's heart rate drops below 120, and a "desat" is when his oxygen saturations drop below 92%. Maks still has these on occasion, but they are becoming fewer and fewer as he grows and gets stronger!

We are a starting to get very nervous and excited for Maks to come home. It will be so nice when our family can finally be together. Milyn keeps telling me she wants to "hold baby Maks on the couch." It is pretty cute, and I feel so bad that she hasn't been able to even see him yet. She has been such a trooper through all of this. It has been such a blessing that she likes to go to the babysitter and play with other kids. I can't even imagine what it would be like if she threw a fit every time I had to leave her to go to the hospital. I hope she somehow knows how much her dad and I appreciate and love her! Here she is tonight with her cousins, Rylie and Whitney, on their first 4-wheeler ride of the year with Papa!


I am getting nervous about Maks coming home on oxygen. I know we will be pretty home bound anyway because of his prematurity and poor immune system, but the thought of having to haul him, and an oxygen tank, and a monitor, and a car seat, and Milyn is pretty daunting and exhausting! It really will make going ANYWHERE an ordeal.

Maks also has another eye exam tomorrow. I always dread Thursdays! We are really hoping that his good week will help to show some promising improvements in his eyes! We also know, however, that some decisions might have to be made tomorrow. I pray that we will be guided by the Spirit to know what to do if faced with them.


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Day 81

Maks is finally starting to get the hang of this whole feeding thing. It is pretty crazy how well he has eaten today. I wouldn't be surprised if he sleeps all day tomorrow! He ate 100% of his bottles during the day shift, and tonight when I talked to the nurse, he had eaten 100% of both of the bottles she had given him! Nothing had to be given via the feeding tube today! I am hoping he has just figured this out and that tomorrow won't be too much of a recovery day.

He gets his hematocrit checked in the morning. We'll have to see if his body is finally making its own red blood cells. He is at the age where he should be able to start doing this, so hopefully he won't need a transfusion. He did seem to be a little less stable with his oxygen sats today, and when I was holding him this evening after his bottle, he had a pretty bad bradycardia episode, and his heart rate dropped to the 40s. He coughed a little and was probably just choking a little from some regurgitation after he ate. It was still a little unnerving, though,and it makes me nervous to bring him home without a heart rate monitor.

Here is my sweet little miracle after his bath today.


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Day 80

Maks did well today. He is doing better at maintaining his heart rate and oxygen saturations without the nurses having to continually chase him by turning the oxygen up and down or by repositioning him. During the day shift, he at three entire bottles, two of which were back-to-back feedings. He did so great, but it definitely wore him out. When I spoke with the night nurse, she said Maks completely slept through his 8pm cares.

His hematocrit was only 30.5 this morning. Normally Dr. Anschutz transfuses if less than about 32, but since Maksim hasn't been symptomatic of anemia with lots of bradys and desats, he decided to wait on the transfusion and recheck his hematocrit in two days. If it is 29 or less, they will definitely transfuse on Wednesday.

Maks has actually had a pretty uneventful and stable couple of days. I am hoping this continues so his body can focus on his eyes. The prune juice has helped him be less constipated, and he is more stable on his oxygen. Hopefully this reduced amount of stress will help show positive results on his eye exam this Thursday.

The best part of today was during morning rounds when Dr. Anschutz said, "you better get that nursery painted!" We aren't even painting Maksim's room, but it is what the doctor was referring to that mattered. We still probably have at least a couple of weeks left in the NICU, but compared to the last 11 1/2 weeks, that seems like nothing. Logan and I are starting to freak out, because we have literally not done anything to prepare for Maksim coming home, except put up the crib. We have so much to do. We had nothing done before he was born because we just weren't expecting that, and now that he's here, and Logan and I are both working full time, we just haven't had time to get anything ready. I guess we better hurry, though, because even though it seemed like he would never come home, it looks like he will be after all!




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Day 79

Maks got to wear real clothes today! I thought for sure they would fit him because he seems so big to me compared to how small he was. Well, even at 5lbs, the preemie clothes are way too big. I guess he isn't quite as big as I thought! :) I put them on, though, and scrunched them up a bit, and he looks super cute!








He has done well today and has had fewer episodes of tachypnea. They will just check his hematocrit tomorrow with the regular weekly labs. Hopefully they look good, so he doesn't need another transfusion.

Yesterday at Time Out For Women, one of the presenters, John Hilton III, quoted Richard G. Scott from the October 1999 General Conference for The Church of Jesus Christ of Latter-Day Saints. This is what Elder Scott said:

"The Lord has placed currents of divine influence in your life that will lead you along the individual plan He would have you fulfill here on earth. Seek through the Spirit to identify it and carefully follow that direction that the Lord has put in your life. Align yourself with it. Choose, willingly, to exercise your agency to follow it. Do not be overcome by concentrating solely on today, its challenges, difficulties, and opportunities. Such preoccupations must not totally capture your attention so as to consume your life. Oh, how I would encourage you to weave deeply into the fabric of your soul the recognition that your life now is a part of a much bigger plan the Lord has for you. You lived part of it in the premortal existence. You were valiant there and came here because you wanted to grow and enjoy greater happiness. What you decide to do now will affect how well you fulfill that divine, personal plan He has for you."

For some reason, the word "currents" in the first sentence really inspired me. I had a hard time concentrating on the rest of the talk, because I was so intrigued by currents. I began thinking about their influence on bodies of water and their necessity in directing the waters's path, and I began comparing my life to a body of water being influenced by divine currents.

Since I was 10, I have loved writing poems, a hobby I inherited from my Grandma Joan. I love how they allow me to express my emotions in rhythm. It has been quite sometime since I last wrote a poem, but I was so inspired by currents, I truly felt I needed to dig deeper into my feelings and put them on paper. Although this is what I believe inside, my faith on this subject is somewhat wavering right now. Perhaps this is why I was inspired to write.

Currents - Shalee Belnap 2013

It seems basic, you know, water's path to the sea.
From on top of a mountain, through rivers and streams.
But the water is faced with a turbulent strain
As currents compel and influence the way.

These currents are formed when an obstacle trends
Maybe rocks, or an edge, or a tortuous bend.
And what is the water without all this force?
It remains in a stand-still without purpose or course.

And such is our life on this journey we ride
As we seek for the purpose and course in our stride.
We know our beginning; we seek for our end;
And the journey between is an untraveled friend.

But what when this course takes an unplanned turn
From the journey we'd sought for, and hoped for, and yearned?
It comes as an obstacle, trial, or test
To shape and to mold on our eternal quest.

We grumble and groan as that goal loses sight.
"How could God do this? That pathway was right!"
We fail to notice God's hand on our raft
For He placed these currents to alter our path.

God has a vision of what we can be.
He influences currents on our path to the sea.
And just like the water requires such force
So do we need direction on our divine course.


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Day 78

Maks had a good day. The prune juice finally helped him have a bowel movement, and we always get excited about that. He is still pretty gassy, though, and that darn fortifier sure makes his toots stink! :) He is maintaining his saturations with the oxygen decrease, but he is still having some tachypnea today. The doctor is having the nurses watch his bradys and desats closely, and if he starts having a lot, he wants a hematocrit ordered to see if he might need a blood transfusion. Hopefully he doesn't!

Logan and I got to go see him tonight to give him a bath and feed him a bottle. We also weighed him, and he weighs 5lbs and 2oz! Not far from the 6 1/2 pounds my pregnancy app says he should be if still inside of me. I missed being able to see him earlier today because I was at Time Out For Women with my mom and sisters, but it was a nice, welcomed change and full of inspirational speakers.


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Day 77

I forgot to mention yesterday that we took Milyn to the ENT yesterday morning. We were pleased to hear that her tonsils have responded to the steroid treatment, and unless they swell back up now that she has stopped the steroids, she doesn't have to get them out! One less thing to have to worry about, and it looks like we are finally getting our happy and spunky Milyn back. It has sure been a long three weeks, though!

Maks had a good day today. Dr. Anschutz was on, so it didn't surprise me at all when the liter flow on his oxygen was reduced from 2.5 to 2 LPM. He has been tolerating it fairly well, but has become a little tachypneic this evening (breathing faster than normal). Hopefully his lungs will adjust to the change in the next couple of days. If he continues to tolerate the weaning on the vapotherm, Dr. Anschutz said he could be on wall oxygen as soon as next week.

He has still had some constipation, and I keep whining about the fortifier change to Breast24. I asked the doctor what he thought about increasing him back to 170ml/kg/day and putting him back on the Breast22 to reduce the constipation. He looked at Maksim's growth chart, and he was very very pleased with how it looks. He just really feels that Maks needs the extra fortification to continue with good brain and lung tissue development. I couldn't argue with that, so we settled on an agreement of adding a little prune juice to his diet a couple of times a day to help things get moving. Hopefully that helps to make Maks more comfortable.

Yesterday was a rough day for me. The timing of rounds in the mornings is somewhat unpredictable, but it seems to have been getting later and later
lately. Because of this, I have been bringing my work computer to the hospital with me so I can get some work done while waiting for rounds to start. I also haven't been able to go to the hospital in the evening at all this week because Milyn as been so sick and whiney, that I haven't been comfortable leaving her with someone twice a day. This means that all week, I haven't really had any quiet time to just sit and be with Maks, because I was working when I was there in the morning, and I was not getting my usual afternoon time with him.

I started feeling really bad for myself yesterday as I looked around at all of the other mothers in the NICU who seemed to have nothing on their minds at that moment except their precious babies. I hated that I was also concerned about all of my work and how I would be able to accomplish it. I wanted to be able to just sit and hold Maks, and relax, and focus on him getting well. Instead, I was stressed. Everything started to feel really unfair, and I again questioned why this had to happen to me. I can think of several selfish reasons why I think other people would be more suited for this trial. For instance, it could have happened to someone who didn't have to work full time, or someone who didn't have a toddler at home. However, for whatever reason, God assigned this trial to me and to my family. He somehow knows that I will get through this. I wish I could feel the same, and I wish I could feel that strength.

I was able to take some PTO today, and it helped quite a bit. It was so nice to hold Maks at the hospital this morning and not be worried about getting back to work in time to get something done before getting Milyn from the babysitter. I am also excited to be going to Time Out for Women with my mom and sisters this weekend. It should be a nice break from everything that has been going on this week.



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Day 76

Thursdays are always big days for Maks. To follow up with yesterday, Dr. Borghese said we will just continue to watch the hemangiomas. Although they are getting quite large, I prefer not to have them treated with oral or injectable medications, so this was good news.

When I came in this evening, I found Maks in one of the cribs they put the "well babies" in! This is just craziness! No more incubator. Look how big and grown-up he looks!





Maks had another eye exam today. I wasn't there for the exam, but I got to talk with the doctor after the exam. Again, it doesn't look worse than last week. This is great news! It has also travelled a tiny bit closer to zone three, and he hasn't developed any tortuosity of the blood vessels. Because of this, Dr. Romwell thinks we are safe to wait another week to see if it will move further into his visual periphery on its own before deciding to do the Avastin injections and laser treatments. We are continually praying for a miracle that this will resolve on its own, but we are starting to face the reality that treatment options will have to be considered. The ophthalmologist is very pro-Avastin. Once the laser treatment is done, vision is lost from the point of treatment and out. He says that using Avastin is like buying you more visual real estate before the laser treatment is done.

We definitely have some things to consider. The risk of infection is the highest risk with the injection procedure. I keep thinking I am too young to have to be making these kinds of decisions. I feel like a teenager, with childlike instincts to want to defer decisions to my own parents. I have to remember that I am Maksim's mother, and Logan and I are the ones entitled to make decisions for him. But it is scary. Decisions are scary. I guess for now, I will just keep loving him and holding him, and we'll see what happens next week.


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Day 75

Poor Maks has been so constipated. He went over 48 hours without having a bowel movement, which is a long time for him. I know it is because when they decreased his total fluid allowance, they increased his fortification. The poor kid was pushing and straining all day, which can't be good for his hernias. They ordered a glycerine enema to be given, and luckily he had good results after that.

Maks has a couple of hemangiomas, and the one on his neck has become quite large. It started bleeding a couple days ago and has been off and on bleeding a little. I think it is because the oxygen tubing rubs on it and causes it to become irritated. The nurse said she let the nurse practitioner know, and we might have to start looking at treatment options for it tomorrow. He also has another eye exam tomorrow, and we continue to pray for favorable results.

I haven't been able to go to the hospital in the evenings this week like I am used to doing because Milyn has been so sick and whiney. I just hate to leave her twice in one day when she is like that, especially with people she may not be familiar with. Maks was due for a bath today, so, since I could not go this afternoon, Logan stopped at the hospital after work to do it and spend some time with him. If Maks is anything like his sister, he will just absolutely love his dad!

Logan even took a few pics for me while he was there. You can see the edema in Maks' face, especially around his eyes, but he is such a cutie! And he took almost a whole bottle for both Logan and me today!





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Day 74

Today was much less eventful than yesterday. We like it like that! Maks is doing well and continues to grow grow grow! He weighs 4 lbs 13oz tonight. I know a lot of this weight is fluid, but it is crazy to think how big he is. He isn't gaining too quickly, though, which is good, and he remains slightly below the recommended weight for gestational age. It just goes to show how much these little babies grow in their mommies those last couple of months.

Milyn is still whiney, but she slept a little better last night and isn't snoring as much. It was nice to finally be able to get some sleep, and we are hoping tonight goes well as well.

I was reading in the Book of Mormon yesterday and came across a scripture in 1 Nephi chapter 8 verse 8 (kind of ironic since my favorite number is 8). Anyway, I really liked it and related to it. It is of Lehi speaking of the great darkness he experienced in his vision of the tree of life:

"And after I had traveled for the space of many hours in darkness, I began to pray unto the Lord that he would have mercy on me, according to the multitude of his tender mercies." (Book of Mormon, 1 Nephi, Chapter 8)

I know the Lord is full of tender mercies, and although I feel like I have "traveled for the space of many [days] in darkness," I pray that light and happiness are ahead, much like the light and happiness Lehi experienced when he reached the tree of life.

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Day 73

Maks gave us a little scare today. Maks has bilateral, reducible inguinal hernias, which is a very common problem for preemie boys. Last night and this morning, the nurses were unable to get his to reduce (go back up through the inguinal canal into the abdomen). They told Dr. Borghese, so she ordered an X-ray of his abdomen/groin, then she came to try to reduce them herself. After 20 minutes, she finally got them to reduce. They told me this at rounds this morning and said she ordered another X-ray to be done this afternoon, and depending on how it looked, they might have to send him to Boise or Salt Lake for surgery. The kicker about that is, if he has to be shipped, the insurance won't pay for him to come back to Idaho Falls, and he will have to stay there until he is ready to come home. Drama drama drama. We were so grateful when they called us this afternoon to tell us the X-rays looked good, and for now he doesn't need surgery.

Maks, otherwise, had a fairly uneventful day, just like we like it to be. He did better about eating his bottles, and he doesn't seem as swollen to the nurses and doctor. He remains on the fluid restriction, and is still on the same oxygen settings. He weighs 2060 grams, which is about 4lbs 8 oz and is four times his birth weight!

We had some special visitors tonight. Logan's Grandma Belnap and Uncle Todd came to the hospital to see Maks for the first time. It is always crazy to hear people say how small Maks is, because he has grown so much and looks so big to us.




Milyn is still pretty sick and is seriously driving Logan and me crazy with all of her whining. I know she doesn't feel well, but we are just so exhausted and losing our patience with her. Luckily she has an appointment with the ENT on Thursday. That day just can't come soon enough.

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Day 72

You know, some days, you just want to forget about everything that happened. Today is pretty much one of those days. But I guess instead of forgetting about it, I will write about it. After getting literally no sleep last night because we were up all night with Milyn throwing up and running a fever, our day just kept getting worse. Milyn's tonsils are so swollen today, she hasn't been able to eat anything, and she started to drool because it hurts so badly to swallow. After Logan got home from church, I decided to call the Pediatric Center again just to see if they had any thoughts since she has continued to get worse. The PA who we saw yesterday recommended we go to the ER to get her looked at.

Once there, they gave her some steroids to help with the pain. It definitely seemed to work; she perked up about 45 minutes after they gave it to her, but she continued to complain of her "tongue" hurting. They decided to try a broader spectrum antibiotic to see if it will help, but the doctor said it is probably a nasty virus. They sent us home with a prescription for Zithromax and Prednisone and a referral to see an ENT this week to see about getting her tonsils out. Isn't that just fantastic? Not only are we running on no sleep with a sick baby in the NICU, but now we will probably have our other child in the hospital in the next couple of weeks getting operated on. Life just keeps getting better and better.

Maks isn't having that great of a day either. He has started retaining fluid, requiring more oxygen, and being more lethargic and sleepy. I started noticing a change during the beginning of the week. He just hasn't been as awake and alert when I have been there. They only attempted one bottle during day shift, and he only drank about 8mls of it. He hasn't shown signs of temperature variations, so that is good, but they are having to watch him a lot closer to see if they can identify the cause for all of the changes. The doctor didn't want to start him on a diuretic because last time he was on one, all of his electrolytes went way out of balance. They did put him on a fluid restriction, however, to see if that helps with the swelling. They decreased his total fluids from 170ml/kg/day to 150ml/kg/day and increased his nutrition from breast22 to breast24. Basically, they increased the calories to make up for the decrease in volume.


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Day 71

Maks is 10 weeks old today! He has had a pretty good day, but he seems a little fussier than normal. I hope he is just developing into a typical newborn and that this is not a sign of an upcoming setback. He is so cute, though, and I definitely enjoyed my snuggles with him today.

For a Saturday, it wasn't a very good day at the Belnap house. Milyn got really sick this morning and spiked a fever of 102 degrees. We took her to the doctor thinking maybe her ear infection came back or didn't resolve all the way. Well, her ears looked great, but her poor little tonsils are so swollen, they are almost touching. Strep test was negative, so she just has a virus, but it is a nasty one! She has thrown up several times this afternoon and just can't seem to keep anything down. She finally ate a Popsicle that Nana brought her. We are hoping she can get some much needed rest tonight so mommy and daddy can also get some sleep.


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Day 70

70 days, people. We have been going to the NICU for 70 days. Does it sound like a lot? Because today it feels like a lot. Today just turned out to be an overall overwhelming, breakdown day for me. Thank goodness I have this cutie to see when I come to the hospital.


Maks had a good day. He ate 100% of one bottle during the day shift, but he slept through all of the other feedings and sets of cares. He weighs a whopping 4lbs 6oz! If he keeps this up, he's going to be huge when we bring him home. :)

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Day 69

Maks had his third eye exam this morning. We have been really worried for this since the retinopathy worsened from the first exam to the second exam. Logan was able to be there this time, and I requested that the ophthalmologist be there as well to be able to get real-time and first-hand views of Maksim's eyes. Usually the nurse does the exam and takes pictures of the inside of the eye, and the doctor reviews them at a later time. Since the doctor was there, Logan got to ask him lots of questions.

This is what we found out:
1. Maks still has retinopathy of prematurity in both eyes.
2. His eyes this week don't look worse than last week.
3. Last week, Maks had areas of retinopathy in zone 1, or the central part of his vision.
4. This week, the areas of retinopathy have moved out of zone 1 and into zone 2, the less central part of his vision. There are three zones of vision. Zone 1 is central; zone 3 is peripheral; and zone 2 is the area in the middle.
5. The Avastin injection has only been performed twice in the EIRMC NICU. The ophthalmologist showed Logan a picture of the eyes of a patient it was performed on before the injection and after. Logan said the blood vessels in the first picture were very tortuous and "angry" (much worse-looking than Maksim's pictures), and the consecutive pictures after the injections showed marked improvement.
6. The doctor is concerned about Maksim's eyes and will continue to follow up with him on a weekly basis. This is to help catch sudden worsening of the retinopathy that can lead to blindness.
7. Maks will most likely require a laser treatment called pan-retinal photo coagulation, which coagulates the existing blood vessels so they don't continue to grow and cause further damage. This leads to permanent blindness in the area of treatment.

At this point, the ophthalmologist said treatment with Avastin may need to be considered. Although many doctors have seen this medication work very well for their patients, I still have many reserves regarding its use on Maks. We pray and are hopeful that the areas of retinopathy will continue to work their way into the periphery, so if eventual laser treatment is required, the resultant blindness will be less noticeable to Maks.

So many people around the world have been praying for our Miracle Maks. Logan and I can't adequately express the amount of gratitude and humility we have towards you all. Thank you for your concern for Maksim, and more importantly, thank you for your prayers and faith. Please continue to pray for him and our family as new challenges and difficulties arise every day.


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Day 68

Because Maks reached 1800 grams, they are starting to wean him from the incubator into an open crib. They have slowly decreased the humidity and temperature settings over the past couple of days, and today they popped the top of the incubator lid and swaddled him right up. When I went in this evening he was doing well with maintaining his own temperature, so we hope he continues that. It is fun to walk in his room to see him so close up and tangible without the plastic completely surrounding him. It is also easier to get him out and hold him, which makes mommy happy. :)


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Day 67

Maksim finally had a huge bowel movement this afternoon! His belly is so much smaller and softer! Hooray! His oxygen was decreased to 2.5L on the vapotherm. This is progress, and so far he has been tolerating it well. He also reached 4 pounds again when they weighed him last night. We'll have to see if he stays there this time. :) He has been really sleepy again, and because of this, he didn't get any bottles during the day shift. I wonder if the time change has anything to do with him being off schedule...

I spoke with Dr. Jenkins today about Maksim's last eye exam. He said if his exam this Thursday is worse or unchanged, Logan and I will probably be faced with the decision of whether or not we want to sign the consent for him to receive the injection of Avastin. Avastin is a chemo-therapeutic drug that is FDA approved for the treatment of colo-rectal cancer. Chemo-therapeutic drugs are cytotoxic, which means they cause cell damage or cell death. This medication works for retinopathy of prematurity by stopping the abnormal growth of blood vessels in the eye. Unfortunately, it has the potential to affect all other healthy or normal cells in the body, as well as the ones it is trying to destroy.

The use of Avastin for retinopathy of prematurity is an "off-label" use of the medication, which basically means the FDA has not approved it for the treatment of ROP. Also, it has only been used to treat ROP for about two years, so the long-term effects are not yet known. Here is some verbiage from the consent for treatment: "The goal of treatment is to prevent further loss of vision. The medication may not restore vision that has already been lost, and may not ultimately prevent further loss of vision caused by the disease...Your baby does not have to receive treatment for their condition, although without treatment, these diseases can lead to further vision loss and blindness, sometimes very quickly."

If the ophthalmologist says Maks needs this drug, Logan and I will be forced to make a decision. I am so anti-medication, it is ridiculous. That instinct in me says, "absolutely don't consent to it." However, I don't think I could ever forgive myself if he didn't get it and ended up blind.

Needless to say, Logan and I are not looking forward to making this decision. We are still comforted by the words of the Priesthood blessing he received last week, and we know there is a possibility, especially through faith, that he will have normal vision. We know, and are so thankful, that Maks is remembered in so many families' prayers all throughout the world, and are asking everyone we know, over the next couple of days, to specifically pray that the retinopathy in Maksim's eyes will resolve, and that Logan and I will not be faced with the decision for Maks to receive this risky medication. Thank you all for your prayers and faith.


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Day 66

Dr. Jenkins increased the number of times Maks can have a bottle per day to two per shift. Of course this is only if he is showing cues. When I went to see Maks at 5 this evening, he had been gavaged (tube fed) all day because he was sleeping during all of the cares. I was able to give him a bath when I got there, and this woke him up enough to take all but 13ml of his 5pm feeding through the bottle. We will see in the morning how he does during the night shift.

No other changes to orders today, but I did take a couple pictures of him throughout the day. The first one is of me holding him while waiting for morning rounds before I had to run back to work, and the next ones were taken right after his bath! His poor little belly is so full, and he was very wiggly, but I think they're cute.











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Day 65

Maks continues on a steady course. I figured four pounds was just a little much yesterday, so I wasn't surprised when I spoke with the nurse this evening, and she told me he had lost a couple of ounces. Tonight he weighs 3 lbs 14 ounces. His size still just blows me away, and I am confident he will get above four pounds again soon.

He is doing well with his bottle feedings of breast milk. He is getting the bottle once every shift now, so twice a day, and he is usually able to take all of it save about 5-10 ml. He is doing so well with the bottle, but it makes me sad to think that he may never breast feed. We will keep trying, but I just don't have the time and resources with Milyn to be able to dedicate myself to coming to the hospital and feeding him every three hours. However, I am grateful my body has responded well to pumping up to this point, and I hope to be able to continue this as long as possible to help give him the benefits of breast milk, especially the immunity due to his immature immune system. Who knows, I will keep at it, and maybe he will surprise me by eventually breast feeding exclusively.

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Day 64

I finally got to see and hold my sweet Maksim today. It has been a long three days of not being able to see him. He has grown and changed so much in just those few days. He is growing a ton! He made it to four pounds tonight when the nurse weighed him! Isn't that insane? He hadn't pooped in a bit, though, so I wouldn't be surprised if he is down a little tomorrow, but 4 lbs is huge! He really is making some progress.


No new orders today, just letting him grow and adjust to one bottle feed a day. I was finally lucky enough to be there to give him his bottle tonight. Logan even got to be there. He is up to 37ml on his feeds, and he took all but about 14ml. We tried a little bit of breast feeding before, and he latched on and ate a little, but not much. We will keep trying. We maintained skin-to-skin contact as I fed him his bottle to help make him more comfortable and encourage bonding. Then I got to just hold him for a bit before heading home to put Milyn to bed. With all the stress of having a baby in the NICU, I am grateful for quiet moments like tonight when mommy and Maksim can just snuggle!


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Day 63

I'm still fighting this darn cold, so I didn't get to see Maksim again today. Sad day for momma! :( Luckily I haven't had a fever all day, so I am hoping to be able to go see him tomorrow. I feel so bad that I haven't been able to hold him and cuddle with him! Logan was able to go see him today, though, and he took a picture of him for me to see. He just looks like a cute little chunk! I have missed him a lot.

No new orders again today. He continues to do well on the oxygen and is slowly coming down on the percentage he needs to maintain the higher saturations. When I called this evening, he was on 3L of about 28-30% oxygen.


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Day 62

Today was a sad day for me, because, for the first time since he was born, I wasn't able to see Maksim. I have been sick and running a fever, and I just don't want to risk getting him sick. It has been rough. I didn't even get to go to rounds. Thankfully, Logan is better, and he got to go see him a couple of times. Milyn is also still really sick, and I think she enjoyed having some mommy time today.

There were no new orders today, but Maksim had his follow-up eye exam this morning. I was sad to learn that more ridges were discovered in both of his eyes. Most of them are small, but he has some in zone 1, which is his central vision. We continue to pray that these will somehow resolve and/or move towards his visual periphery.

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Day 61

Well, it turns out that Maks' big day yesterday was just a little too much for him to handle. He had kind of a rough day today full of bradys and desats. :( He was just exhausted from everything. I forget how fragile he is when he has so many good days in a row. Days like today bring me back to the reality and gravity of the situation he is in and of the long road we have ahead of us.

I went to the hospital this morning for rounds, but didn't get very close because I woke up with a head cold. I guess it was inevitable, considering Logan and Milyn have both been sick for the past couple of weeks. I also didn't go this evening to hold him, because I didn't want to risk getting him sick, and because I wanted him to be able to rest. We also held off on giving him a bottle today. I did, however, bring some breast milk in from this morning and yesterday, because I know it is full of the antibodies my body is producing against this virus. Hopefully it will help boost Maksim's immunity!


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Day 60 - two months old

Maks is two months old today! Look how much he has grown! He now weighs 3lbs 11oz and is 15 3/4 inches long. He is finally bigger than his monkey.


He had a busy day today! Because he is two months, he had to get his first immunizations. He had two shots, and he was a trooper. It was probably a breeze compared to everything else he has been through.

He had another big milestone today; he took a bottle for the first time! I was sad I wasn't able to be there, but they wanted to try it at a time when he was really awake, and unfortunately I was working. The nurse was kind enough to snap a few pictures for me. He is up to 35ml every three hours on his feeds, and I was amazed to learn he took all but 7ml through the bottle! Isn't that incredible?! They will continue to give him one bottle a day for a while, then they will go to one every shift, and increase from there.





He also got a bath, I held him a couple times, and Logan held him once. Needless to say, he was tuckered out by this evening! The night nurse said he completely slept through his 8pm cares. Hopefully he has a good night! Happy two month birthday, Mr. Maks!


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Day 59

Maks is doing great! Since he is now 34 weeks corrected gestational age, they discontinued the caffeine. He is officially off his last medication! The only thing he takes now is the multivitamin.

Due to the "ridge" in his right eye, the doctor increased his oxygen goals. Instead of having a goal to maintain oxygen saturations between 85% and 95%, they now want them to be between 90% and 98%. Apparently studies have been done that show that increased oxygenation after a certain gestational age can improve the ridges in the eyes. Whatever works, I guess. He is tolerating the change well but is naturally requiring a slightly higher flow to maintain the higher saturations.

Logan and my dad gave Maks a Priesthood blessing of healing tonight. It was comforting to hear the words of a loving Heavenly Father tell Maks that he will need his sight to accomplish his purposes on this earth, and promise him that he will have the vision necessary to do so.


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Day 58

Today was a sad day because we didn't get to see Maks for very long. Milyn woke up in the middle of the night throwing up and saying her hair hurt and her tongue hurt. It turns out she has a fever, double ear infection, and pharyngitis. She was started on an antibiotic, and hopefully it will start working soon.

I was able to go see Maks for a minute this morning, but I was afraid to open the incubator because I didn't want to get him sick. I planned on going to see him again this evening, but we ended up taking Milyn to Redicare to get checked out, and there were germs and contaminants everywhere. I knew without a shower, I wouldn't feel safe going into the NICU, and since I had to work tonight, I just ran out of time. :(

When I went this morning, he was doing really well. No new orders were written, and he was maintaining his oxygen sats at 3L and 27% oxygen. I hope he knows how much mommy and daddy missed him today. Hopefully tomorrow will be better!


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Day 57

Maks is 8 weeks old today. He weighs 3lbs 5oz, and is about 15.5 inches long. He is so stinking cute, and it is getting even harder to leave him at the hospital. Logan and I are both just ready for him to be home so our family can feel complete. I think we are both just feeling like something is missing with him not here. It has been a very long eight weeks, and I know the next month or two isn't going to be any easier. Please pray for all of us to have the patience to get through the next several weeks.


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Day 56

Maks finally got rid of his oral-gastric tube! I guess he pulled it out this morning, and Dr. Jenkins decided to give the nasal gastric tube a try. I am so excited. He looks so good, and we can finally see his cute lips!


He had some labs drawn this morning. His hematocrit was 35, which is good. Hopefully that will continue to stay up so he won't have to have any more transfusions. His bilirubin was also good. It has gone down slightly since they stopped the Actigall.

In rounds today, Dr. Jenkins talked a little about the results of Maks' eye exam. I guess there are different stages of ROP, and Maks has stage 2 retinopathy in zone two. I don't really understand much about what all of the terminology means, but it is enough to make me nervous. There is a slight chance it could move to zone three, which apparently isn't as bad, and an even slighter chance it could resolve on its own. If laser treatment is required, which would stop further progression of the retinopathy, he will permanently lose sight in that particular field of vision. I know this seems so minute compared to the many complications he could have faced up til now, but I still worry about it. We pray that Maks can have the least amount of complications as possible, and that we will be blessed to witness many more miracles on his behalf.


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