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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