First Challenges

The last couple days have been down days for our little guy. Alexander's oxygen needs spiked and were much higher than the doctors or we would like, and unfortunately, they can't figure out why. So instead of taking out the PICC line, they started 7 days of antibiotics. This is to ensure that the fluctuation in his vitals isn't due to any sort of infection and is the standard procedure. 

In addition, tomorrow he is scheduled for another EKG, to ensure that a valve that should be shut, hasn't reopened (when they checked this before, it was closed as it should be). They are just trying to rule out all issues that could be causing these flucuations. 

They decreased his food intake so he could instead focus on resting and breathing (instead of growing so much). We'll get a better update on his growth tomorrow when we are there for rounds. 

These days are scary because we are not clear on what's happening. Unfortunately it's what we can expect over the course of the next three months. He's going to have good days and he's going to have bad days. We just keep praying that he has less down days, that they can fix anything causing the down days and that Alexander stays comfortable. 

The biggest thing on my mind these days is hope. I don't think anyone can have enough of it. Looking at his photos gives me hope and so I'll share some new ones. 

This guy also gives us hope! Here Andrew is enjoying an ice cream cone for Dada's 33rd birthday!

Eye-Opening Experience

Two big milestones were met this week! 1) Alexander is back up to nearly his birth weight! and 2) He has opened his beautiful eyes! We are so excited by both!!

Alexander is doing very well with his feedings and is now taking 10 cc's of breast milk in his feeding tube, every three hours. This puts him just shy of 1.5 lbs. He may be up and down day to day but he should gain week over week. He is still taking the breast milk on a pump so that it slowly goes into his stomach over the course of an hour and he is then able to better digest it. I can tell that he is handling it by the poopy diapers I am changing now!! They were going to decrease and shut off his extra fluids (like lipids) today and see how he does. If he can get all his nutrients through his feedings they will be able to take out that PICC line. This is another big thing as each tube and IV he has can be a potential source of infection. 

We just have to keep him free of any infection so we don't have to put another IV into his small body.

Alexander's lung disease is being managed and he had a good x-ray on Wednesday - clearer than his others in the last week. He's still taking between 40-50% oxygen, which is what they expect, but we would love if he would do better. It's very hard sometimes to think that a machine is what is keeping your baby alive, but it's the truth right now. He just doesn't take enough breaths on his own, but I know he'll get there. 

Seeing his eyes completely opened for the first time was amazing!! You can really tell now when he's awake and when he's trying to sleep. We are really starting to get to know our little man and learn his cues. They will start testing his eye sight at 30 weeks (so we have 3 more weeks before they do that), but I was told that he should be sensitive to light and would be able to see blurry colors. 

Here are the latest photos with his eyes opened!

Tired boy! He was up for an hour with me - eating, getting his diaper changed, temperature taken and other "cares," as they are called by the nursing staff. 

Thankful

We have so much to be thankful for this year. First and foremost, for my husband, who continues to be my rock always and forever. Our two beautiful boys. Our incredibly supportive parents, who have been there through the good and the challenging. Our siblings, who can always make us laugh. Our extended family and of course our friends. And definitely modern medicine, research and the care of the nurses and doctors at the University of Iowa Hospitals.

I feel like the early birth of Alexander has shown us how blessed we are with an expansive support system and so many, many prayers. We appreciate each and every one more than we can ever express. 

Thanksgiving was different this year as we were not able to travel back to Ankeny to spend time with the Eckhardt clan. Thank goodness for technology and FaceTime so we could at least say hi! My recovery is still very slow - much slower than I would like or can stand. A lot of pain, a lot of naps and getting around like an old person still. But my parents were able to come for the weekend to help with Andrew, do some housekeeping and let me get my rest. Again, Mom and Dad, you are the best! We had an AMAZING meal at Pete's parents house and Andrew was able to play with cousin Rachel - those two are going to be trouble someday! And we were able to spend some time with Alexander as well.

He continues to impress his doctors, as they actually used the term "over-achiever" during rounds this weekend! While his oxygen usage is higher than what we would like to see, it's what they expect for a 24-week baby. He's been able to keep it under 50% so we will be very satisfied with that. 

They have increased his food again and now he's having 7cc of breast milk every 3 hours - eating like a big boy, as his nurse today said. If he can keep that up and continue with the poopy diapers, they may be able to decrease or even eliminate his additional fluids. Their hope is they can shut those off and remove the line, as that can always be an additional source of infection. We should start seeing him grow more steadily in the next couple weeks too, with this additional food and calories.

The other important thing is just to keep him healthy and infection free, so he doesn't need antibiotics or have any thing impact his growth. This is tough with cold and flu season. Our household has had the flu and whooping cough shots and are doing a lot of hand washing. Andrew unfortunately has a cold right now so Pete wore a mask to see Alexander this weekend - you can never be to cautious! 

He had another blood transfusion last night but his numbers looked good today. As I mentioned, we can probably expect a few of these as he loses a lot of blood each time they do any draws for testing. 

Alexander continues to be a fiesty one; he continually will kick off his blanket and kicks the plastic wrap over his crib (which helps keep the heat in and the germs out). When I am pumping in his room, I can just see his little feet and hands punch the plastic :) We helped with Alexander's care as well - see the photos below of me putting lotion on him. He would not hold still so I had to hold his hands and feet to lather him up!

His eyes are starting to open so it will be fun to see them over the next week or two as they fully open. 

Here are some more photos from our long weekend!

Andrew and cousin Rachel jamming on the piano.

Told you he was fiesty!

And then sometimes he calm and sleepy :)

Ups and Downs

This week we got to experience our first "rounds" with the doctors. It's amazing how thorough they are and how much time they spend on each patient. They also took the time to translate because about 90% of the stuff they discussed we didn't understand : ) They took time to answer all of our question - it's just proof that we are in the right place!

Alexander had his first "down" that we had been warned about. Two nights ago he began needing more oxygen to breath. For his first week of life he had only needed about 20% through the ventilator, but it skyrocketed to 70%. Fortunately he settled himself and today was floating between 35-45%. Their goal is to keep him under 50% but ideally they would like him where he was before at using only the 20%. Oxygen aid impacts eyesight and in premies can cause blindness. So it's important to keep it as low as Alex can tolerate. 

Today, in Alex's daily x-ray, a spot of what they believe to be fluid showed up on his lung. They are trying to shift how he is laying to help drain it and are sucking more fluid out of his mouth than previously - he's so small he can't cough or clear his throat so they have to do all the suction out.

The positive news is that Alexander is tolerating my breast milk very well. He's up to 6cc every 4 hours through his feeding tube. He will be put on a pump today that will help give him the breast milk slowly over the course of the 4 hours instead of all at once, as he was getting. On Friday, they will be fortifying my milk with more vitamins and minerals. This also increases the calories. On average, an ounce of breast milk is 20 calories, and with the additions, it will be about 27 calories per ounce. I'd like to think that through my experience with fattening up Andrew, my milk is more like a Whitey's malt than the average but we shall see : ) 

This will all help him gain weight too, which is the ultimate goal because a bigger baby can fight lung disease and infection better. He's now back up to 1 lb, 4 oz. We expect that he will be up and down day to day, but should expect him to gain week over week. We believe that his digestion track is all working as he's been having wet diapers and he had his first black tar poo! Can't believe we could be so thrilled with poo : )

The doctors think it's "awesome" that he has been able to be off antibotics so far - so hopefully we can keep that streak going and avoid any infections.

They were able to turn off his lamps as his billirubin numbers were down to a 3 - they need to be under 7 to turn off the lamps. They had to be turned on a little today but were back off this afternoon. You will see him without his special goggles in the photos below!

So the next couple weeks will be critical for Alexander. Our focus is to 1) manage his lung disease and keep his oxygen levels down - if he can start to breath better and get a little bigger than they can move him to a different ventilator; 2) eat and grow; and 3) stay infection free!!

We also got to help take his temperature and change his diaper this week, which helped me feel more like his mother : ) Here are some new photos of our little man:

Are these two brothers or what?!?!?

Alexander

Andrew

One Week Old!

Alexander is one week old - it's amazing how fast time flies! Hopefully it will continue to go this fast and this well until the day we take him home! We had lots of positive updates in the last couple days. First, the brain ultrasound came back and it looked perfect! Our nurse said this was a very big deal so it's something we are very excited about. He had to have a shot for his lungs on Saturday but that is something that will probably be ongoing as needed. He's now taking 5 cc of breast milk in his feeding tube every six hours - 10x what he had a couple days after birth. The nurses expect him to start gaining weight sometime this week since he's eating so much. 

Pete was able to visit him on Saturday before he went to the Iowa game - the coldest one on record! And Nana (my mom) stopped by on her way home and let me Facetime with him and his nurses. A BIG THANK YOU to my mom for coming to stay with us to help take care of me, our family and our home. We couldn't do it without you Mom!!

In other Stopulos Family news - we sold our house! Yes, do we really need any other big changes around here?? When I returned from the hospital the first time, we had decided to put it on the market as planned. We thought baby would hold off much longer at that point. Then, we ended up with several showings on Alexander's birthday and the days following. By the time I got home on Wednesday, we had two offers! We are thankful as now we will be able to figure out a plan so we can get a room ready for Alexander to come home!

Holding Strong and Steady

I was able to spend the day with Alex today - he continues to do extremely well! They've increased his food - he is now up to 3 cc's of breast milk every 6 hours. He is losing weight but we can expect that he will lose up to 15% of his birth weight. 

He had an ECHO done on his heart to check for any defects and we are so happy to report that everything looks perfect! He also had an ultrasound done on his brain to examine things since he was born - especially with the trama from a c-section. They look for defects and any brain bleeds. We are waiting to hear the results and are praying for another perfect report.

Alex is also breathing well with limited assistance from the ventilator. The doctor visited with me today and said he is doing so well if he was larger they could move him to another ventilator.  

We couldn't be happier with Alex's progress and with the care he is receiving in the NICU. The nurses and doctors are amazing - they continue to keep us informed and educated about each step. We are so very blessed - God is so great!!

Here are some new photos of Alex.

Here is Nana showing Andrew photos of Baby Alex, which Andrew calls "Al" at this point in time.

Alexander the Great

Alexander continues to impress his doctors and nurses! They said he is doing very well and holding strong. This is just the beginning of a very long journey, but he's got a good start. His levels are strong and they are able to give him a little less support. He's also eating well and is able to take my milk now too! 

Alex moves a lot, which the nurses said is a good sign. He grabbed and held our hands this morning - a very special moment for us. Here are a few photos of how the nurses decorated his room. 

More updates to come! Please keep the prayers coming - we know they are working! It's been overwhelming and amazing with the outpouring of support. We couldn't feel more loved or blessed. Thank you all for everything!!!