100 Days

100 days...whew. 100 days in the NICU. I never would have guessed we would be at this milestone. I hate to think of it as a milestone but when I dig deep I know it is just that. It's the hundredth day of miracles. I still have to remind myself that Alexander shouldn't even be here yet, even after 100 days in the NICU. We hope there are a few more miracles yet in store for him. 

Alexander continues his steady progress. They are slow to change his vent settings because he tolerates steady progress better than huge jumps. He's growing and growing and plumping up nicely. There's what I refer to as NICU fat, which is frumpy rolls of skin and fat on a short, stubby baby. Alex is starting to grow out of that and he's starting to lengthen out and get stronger - more like an average newborn. He will even lift his head a bit when he does tummy time. 

He's starting to be awake more and respond to our voices. We recorded a CD this week of us reading books and singing songs. The nurse today said she played it several times and each time his heart rate went down and he relaxed. I cried pretty hard when she told me that - sad that I couldn't really be there but happy that something I did was making life easier for him. 

Weight: 7 lbs 10 oz

Day of Life: 100

Gestational Age: 39 weeks

Alexander is: super happy being propped up in a boppy so he can look around his room. He gets tired pretty easy so then he settles in for long, cozy naps.

I feel: worried. I try not to dwell on hurdles that are ahead of us. Right now I am most bothered by the challenges Alexander may face when we eventually try to eat. I know I just have to focus on what's in front of us now but it's very hard. At least I have Pete to remind me of WIN - what's important now - and to just enjoy Alexander as he is and celebrate how far we have come. 

Lesson learned: Live in the present. If we spent all of our time worrying what was to come next, we would miss all the good things currently in front of us. And I don't want to miss one moment of our precious boys!

Big Changes

So many great changes in the last few days! On Friday morning, Alexander moved to the Ram cannula - this delivers oxygen and air pressure through prongs in both of his nostrils. It's much more comfortable for him and he seems much more settled. 

The plan moving forward is to keep him steady and slowly wean him down on the vent. He's at 12 and they plan to go down 1 each week. Once he's around 6, we can then start working on feeding. 

He also made the move into a big boy crib! He enjoys it much more because he can do tummy time and sit up in a boppy. 

This weekend Alexander also met his uncles! It was fun to have all the Stopulos boys at the hospital to meet the little man before they headed over to cheer on the Hawkeyes.  

Weight: 7 lbs 6 oz

Day of Life: 97

Gestational Age: 38

Alexander is: much more stable and calm with the ram cannula. He also is behaving like an average newborn - although we know he's much more than average ;)

We enjoyed: getting to both kangaroo care with him - there's nothing better than holding your baby skin to skin. 

I feel: tired. This is wearing on me but we will do everything to have normalcy for Andrew and to continue to bond with Alexander. 

Lesson learned: patience - the greatest I feel that I will ever have to have in my life. This may be an especially trying time in our journey, knowing how much longer we have to go and longing for the day he can come home. 

Looking more and more like big brother!

One of my favorite photos of all time. 

Bath time!

38 weeks and 3 Months

Today Alexander is 3 months old. Today also marks 38 weeks in my pregnancy with him. It's crazy to think I should be walking around with a huge belly and 7lb baby inside me. I really wish I still was. I spoke to a new friend this week, who happens to be one of my saviors, and she said that mothers in our position grieve for the healthy pregnancy they didn't have, the normal delivery they didn't get and the healthy baby they didn't receive. It's very true. Although I feel lucky, thankful and blessed that Alexander is here with us, I often think of what it would have been like to just be "normal". Deep in my heart I know this journey will make us stronger and feel very special to be chosen to be Alexander's parents. 

That being said, it's going to be a long road. This week our new doctor (the rotations shifted into a new month) told us he would project a homecoming closer to summer than spring. This news was devastating to me. I only want to bring Alexander home when he's good and ready but didn't anticipate that it would be so long past his due date. This journey has already taught me that you can not plan for anything. 

On the positive side, this past week has been good. It's a slow but steady progression. Alexander has gone down on his settings very slowly on the C-PAP ventilator. He's eating more - up to 48cc every three hours and growing steady. We got to help give him a sponge bath for the first time as well, which was fun and special. 

We took Andrew up to visit his "brod-r" over the weekend and had a great day. Alexander's room is large enough for all of Andrew's toys and gets our new baby used to a rambunctious almost 2 year old. Andrew likes his brother but enjoys watching Cars and Mickey more than watching Alex! 

QUICK QUIPS

Weight: 7 lbs 1.5 oz (as of 2/15) 

Day of Life: 91

Gestational Age: 38 weeks

Alexander is: hating having his tube go in his nose and makes it his personal mission to try and pull it out at all costs - even when I am holding him. He's very strong and very focused on this one task!

We enjoyed: being part of bath time this week and just helping with a normal parent task.

I feel: thankful to have my NICU mom's Facebook group and friends who know exactly how I am feeling and who are there for me!!!

Lesson learned: Big journeys begin with small steps and we will continue to put one foot in front of the other. 

More Ups and Downs

For some reason I thought that we may be past the ups and downs. It was a silly thought - we are maybe halfway through our NICU stay - why would it only be up from now?? Alexander had such a great weekend after being extubated but Monday was his down day. He kept desating and his oxygen went up to 75%. In addition, I received a call from his nurse practioner that he had 3 fractured ribs. 

By this time, these rib fractures are healing. The doctors thought they happened 10-14 days ago. They only show up on the x-ray when they are healing since his bones are so immature. Due to his gestation, this wasn't surprising. This can happen for babies his size just by turning them on their side. Thankfully by this time he's not in much pain but he may have been before. Just one more obstacle for the little man and one more thing to deal with.

The up was yesterday when we both got turns holding Alexander. He was upset, fussing a bit and moving around and as soon as he was laid on my chest, skin to skin, he calmed right down, settled in for a cuddle and fell asleep. It was amazing! It's the best feeling ever to hold and snuggle with him. I know I loved it with Andrew and it's just as or maybe even more amazing with Alex. 

Alexander got better throughout the day when we were visiting and then was even better today - oxygen was down to 40% and they were able to go down on his vent settings very slightly, but he was handling it well!! I couldn't be happier!

This week a friend started back to work after taking a leave of absence with her son who had a rare form of cancer. So much can be learned from her and her family's journey. She wrote, "Please remember to be kind to others, and before you judge someone else, remember you have never walked in their shoes, no one person can fit perfectly in another’s shoes. We are all unique, not one alike...We all have a different path we walk. Surround yourself with loving people that are good for you." 

Remember to surround yourself with loving people always. Let Alexander's story be a reminder of how those people who you love can be there for you and lift you up when you never thought it was possible. Those people who are there for you during the difficult times will always be there to celebrate the great times!

QUICK QUIPS

I don't know how clever these "quips" will be but I thought this would be a good way to share some additional information and feelings.

Stats: 6 lbs 11 oz

Alexander is: loving his food, pacifier and kangaroo care.

I feel: hopeful. After a very scary and stressful Monday and such a comforting Tuesday, today I just feel hopeful that we will have more good days than bad. I guess that's what any of us can hope for no matter what our situation.

Lesson learned: Surround yourself with loving people always.          

The Most Adorable Cry

I never thought a baby's cry would be one of the sweetest sounds I've ever heard, but this time it truly is! Alexander was extubated on Friday and is now on a CPAP ventilator. This ventilator goes through his nose and into the back of his throat. The vent settings are pretty high but his oxygen was pretty low all weekend until today. This is a HUGE step for him and makes it very exciting for us. Because he does not have the chest tube in, you can now hear his tiny cry. He showed us this in full force today before his 3pm feeding, which is exactly what we want - him to be hungry and show it! It was especially fun to see Andrew react to it - "Baby crying."

He still has his feeding tube in his mouth and we will not be able to starting trying to feed with a bottle or breast until he's on a less powerful ventilator that makes swallowing easier. That will be up to him to show us when he's ready. They still believe it will be a couple months before Alexander will be good and ready to come home. That's extremely difficult to hear, especially because he's starting to act more and more like a healthy baby, but I know we need to be patient so he's 100% ready.

We've also moved into a permanent room in Bay 2-3 and are now in Room 22. It's much larger than Room 6 in Bay 1 and our temp room, so it made it very comfortable to have our family there visiting today. I can hold Alexander every time we visit for as long as he will tolerate and that's especially wonderful for me to bond with my baby boy!

We were able to go to Ankeny this weekend to celebrate Papa G's birthday and see family and friends. Therefore Andrew was able to see his brother for the first time since Christmas! Andrew likes to tell us what Alex is doing - "Baby night night. Baby eat. Baby crying. My bro-der." We are lucky to have Andrew make even the smallest celebrations even better. 

Andrew enjoyed playing with Sophia, Jacob and Rachel. They shared lots of fun, silly moments! Andrew had to have a little timeout and Sophia ran up to him afterwards and said, "Andrew, please don't get any more timeouts!" It's going to be crazy fun once Jake is up, moving around and Alex joins them!

Moving on up...

...to the east side, otherwise known as Bay 3! Yep our big guy officially made the move to Bay 2-3. We are in a temporary room (Room 49) since the NICU is so full right now. They plan to move us again soon. 

This was all possible since he moved to the NAVA ventilator. He's still intubated with a chest tube; this ventilator just gives him bigger breaths and makes him work harder on his own. He's done very well so far and there are big plans for the rest of this week. He started another round of steroids today and if all goes well, they plan to remove his chest tube on Friday!!! Woo hoo! Remember it's always baby steps in the NICU but this seems like a leap to me! He will then be on the C-PAP ventilator, which goes through his nose and into his throat. This will keep his pressures strong enough to help him breath on this own. He is not able to try eating from a bottle or the breast on this ventilator but they hope that we will be able to start working on feeding in the next 3-4 weeks, if he can move to the nasal cannula. His nurse did say today that Alexander is being fiesty and really doesn't like his chest tube, so they are concerned that he may pull it out on his own - but that zest and strength should help him go far!

Alexander continues to grow - as of yesterday he weighed 6 lbs 3 oz. I was warned that the feeding process can take quite a while, so I will have to continue to be patient, which is difficult. Especially since he's look like such a regular newborn - with his size and actions. Hopefully his love for his pacifier and his food will make him excited to start eating, when we can start practicing.

I was able to do Kangaroo care last Friday, when you hold the baby skin to skin on your chest. It's purpose is to help with bonding, having the baby hear your heart beat and smell your skin. It can also help promote successful breast feeding. To me, it was just one of the most wonderful moments to finally, really hold my baby, feel his skin and have him close to me. I just feel so thankful and blessed that he's doing so well and making steady steps to be a healthy baby and little boy!!

Yesterday I was able to hold him in my arms for 2 hours, he was quite comfortable, sleeping the entire time. We know we have a long road to go but these positive steps and exciting moments keep us hopeful and thankful!