Merry Christmas!

It was a very blessed Christmas this year as we were able to have our family of four under one roof - at least for a short period of time. We stopped in Iowa City on our way home to visit my family in Ankeny. Andrew looked at "Baby Al" and said, "Baby night night." He then proceeded to get a couple cookies from the nurses : ) It was a great way to celebrate the holiday and to remember how much we all had to be thankful for. We were also able to see both sides of our family and Andrew was able to play with all of his cousins. It's great to see them all together, running, screaming and just playing hard. 

Alexander had a hard Christmas as his stats dropped significantly and he had to undergo numerous tests to ensure he didn't have an infection. The initial tests came back okay but on Friday it showed that he did have an infection in his blood. He started 10 days of antibiotics and it appears to be helping. 

His lungs are slow to develop and he was put back onto the jet ventilator Christmas morning as it's much more gentle on high settings, which he was requiring. His oxygen was up to 60-70% and he was struggling. The doctors said that his lung disease is worse than other 24 weekers but they are doing everything in their power to help him. He started another round of steroids over the weekend and by today his oxygen was back down to 40% and his vent settings were much better. 

He's eating 23 cc every 3 hours and they started fortifying my breast milk so he will have more calories per serving. This should help him gain even more weight and help regenerate his lungs even faster. He's up to 3 lbs 1 oz so he's doubled his weight since birth!

It's going to continue to be slow but we are staying strong and positive and are thankful for all the prayers, thoughts, and support from all our family and friends - and those that we don't even know. It's all working to help Alexander get healthy and get him home to us!

The New Normal

I thought that once Alexander started having some good days, we would just have more and more good days. Instead, what I am learning, in the NICU it's two steps forward and one step back. 

On Thursday, after 2 days without his ventilator tube in his chest, he had two "spells," situations where his stats sank and he couldn't come out of it on his own. Normally they have to "bag" him, meaning they take a rubber bag and take manual breaths for him so his heart rate comes up, his oxygen levels become normal and he starts breathing again. So, the chest tube went back in, so he doesn't have to work so hard. This was expected by the doctors, but I was hoping that he could do it on his own. They also said they were pleased that he was able to breath on his own for so long. Also on Thursday, they thought he had an infection and started him on more antibiotics. One step back...

Friday we were able to head to Iowa City - it was a two hour drive due to ice, traffic and accidents - but it was worth it! Alexander had a good day, I got to hold him again and he was awake for some of our visit. He's on a different ventilator than what he started on so I am able to hold him when we visit. He was very stable and was doing well on the ventilator - good oxygen levels and very little spells. The nurse practitioner even mentioned that if he stays steady and stable, he may be graduating to Bay 2-3 soon. Bay 1, where Alexander is now, is for the sickest babies. They only move to Bay 2-3 if there is a sicker baby that needs the room. This would be a good sign! One step forward...

Saturday was an even better day. The little man was eating 17 cc of breast milk every 3 hours (or about a half ounce). He's up to 2 lbs 11 oz! He was very stable and the cultures came back negative so they were stopping his antibiotics. All his fluids are now from his feedings so if he stayed stable, they planned to take his PICC line out. His oxygen was down to 40% and his ventilator settings were good. A second step forward...

On Sunday, we had our step back. Alexander had another bad spell that he had to be bagged to come out of. His oxygen was up to 55% (they like it under 50%) and his ventilator settings were turned up. They are running more cultures to see if he may have another infection. The nurses are also reporting that they are hearing the murmur back in his heart - we don't know yet what this may be. We will find out much more tomorrow during rounds. 

It's hard to not dwell on the down days or the steps back. All the love and support of our family and friends has been huge to keep us focused on the steps forward and the positive things we are experiencing. 

Here are some of our latest photos of Alexander and some of playing outdoors with Andrew (his first time playing in the snow!)! These help us focus on the good times in our lives and remind us how truly lucky we are!

One Month Old

Today was a day I'll never forget. Alexander turned one month old and I was able to hold him for the first time. 

Alexander's vent tube was getting too small (he's up to 2 lbs 12 oz - again, still a lot of fluid) and so the doctors needed to put in a larger one. Instead of moving forward, they wanted to see how he would do on a ventilator tube that goes into his nose, instead of his chest. This causes him to do a lot more breathing on his own, which can still be difficult at his small size and with his immature lungs. This morning, the tube was removed from his chest and he did very well. The doctors warned that he could need to be intubated again, which often happens with babies his age. 

Since the chest tube was removed I got to hold Alexander! It was 30 minutes of perfection. He was able to hold his temperature and didn't have any breathing spells while I held him. As long as he stays on this ventilator with the tubes in his nose, I can hold him one time each day. I am completely thrilled as before this I could only change his diaper, check his temperature and hold his hand. 

They will continue to monitor his vent settings, oxygen levels, oxygen gases and daily chest x-ray to ensure that he can tolerate this new ventilator. We are hoping that he stays strong!!

In other news, his feedings are back up to 9 cc every 3 hours and he's having good diapers (very important so that he gets rid of all his extra fluid and avoids any infections in his bowels). Over the weekend he began a treatment of steroids to help his lungs. He will have another dose tomorrow and then will be off for at least a week. This may impact his tolerance of the new ventilator as well so it will be closely monitored. 

We hope the positive steps this week will continue to move us forward to taking a healthy baby home in March (his due date was March 3)!

Waiting to hold the little man.

Pete's ring is around Alexander's arm. Below, it's on his foot, which slide on his ankle the day his was born.

Here are a few pictures of big brother too! We talk about Baby Alex all the time and Andrew even asks to see photos of his baby brother.

Grateful

The last 24 hours have been a whirlwind and now we are exhausted and simply grateful.

Alexander was able to slowly take the second and third of the doses of the indomethacin - it has him retaining a lot of fluid that he should pee out over the weekend. He's up to 2 lbs 6 oz but we believe that much of that is fluid so he may appear to lose weight over the next several days.

We received the great news that the PDA has closed!!!! At this point it can still reopen so it's something that they will continue to monitor. We were warned that just because it's closed doesn't mean that we will automatically see a jump in his stats. He's a super preemie - so his stats are going to be up and down most of the time. He has very immature lungs and that is a constant focus and balancing act to ensure he has enough oxygen (but not too much), his vent settings are enough (but not too high), he's eating enough (but not too much fluid), and on and on and on. 

They did find another, small defect in his heart but it's one that many people live with their entire lives. It's called PFO, or patent forament ovale, which is a hole in the heart that didn't close property after birth. This is very common and is often only discovered during tests for other issues. Most never need treatment for this defect, but it is something they will continue to watch.

The course of action now is more surfactant. This is a compound made normally in the body, but because Alexander's lungs are so immature, he doesn't make enough of it. This helps give him a boost without impacting the amount he is making on his own. It's quite the process - as they have to take him off the ventilator and manually breath the surfactant into his lungs (see photos below).   

We are very grateful to have avoided surgery and hope that Alexander can focus on growing his lungs for now. We are hoping for a little less excitement and just steady growth for our little man!!

"He's the boss"

We have learned that the NICU is no picnic. It's not a place just to watch your preemie grow. It's a day by day grind of trying to help your baby survive (since they really should still be in the womb). 

Each day can bring a new set of challenges. The last two days have brought many potential challenges. As Dr. Klein said, "He's the boss." Meaning, Alexander's body will do whatever it wants to do and we have to react to it. 

First off, they did identify a source of infection. Alexander has a urinary tract infection, which is being treated with antibiotics. He has several lines going into his body and that can cause bacteria to grow and settle in lots of different areas. When babies this small have an infection it causes all aspects of his organs to slow down and operate a little less than they otherwise would. We are hoping the antibiotics do the trick.

Secondly, they did identify that the heart duct or vessel that was closed after birth, has reopened. This is called patent ductus arteriosus (PDA) and is a type of congenital heart defect that affects some babies soon after birth and about 50% of preemies. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart - the aorta and the pulmonary artery. Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of fetal blood circulation.

Within minutes or up to a few days after birth, the ductus arteriosus closes. In some babies, however, the ductus arteriosus remains open (patent). The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries.

PDA is first treated with medication, very similar to Ibuprofen. The drug causes the PDA to shrink and close, which is why you don't want to take Ibuprofen while you are pregnant. It also impacts the kidneys and so continued urine output is very important to measure success and ensure the kidney's are not damaged. If the PDA isn't corrected with medication, then open chest surgery is needed to manually close the vessel. We would like to avoid that at all costs as it can be very hard on Alexander's body and take several weeks to recover.

Alexander has had the first of the three doses of the medication (indomethacin). They have not given him the second dose as his urine output isn't what it needs to be. The output of urine helps to measure how his body is tolerating the medication. Basically before tonight we want him to pee as much as his little body can handle so he can take more of the medicine and correct the PDA. 

One good piece of news is he is now over 2 lbs, but unfortunately some of this weight gain is fluid from all the stuff that's going on with his body. You can tell in the photos below that he looks bigger, but a little bloated too. This should go away as he grows and some of these issues are solved. 

Here's our little man, still being so strong through all of this!

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!!!