Surgery

Maximus was born with a CCAM in his lung, as a reminder we didn't know this until he was born though they can sometimes be detected on ultrasounds. This is a random event 1 in 300,000 babies are born with them, and his has nothing to do with his prematurity, nor did it cause his premature birth. A CCAM is a fluid and air filled mass similar to a cyst. From his CT scan on November 2nd we learned that it  was oddly shapped and the largest 'bubble' was 1.5cm and the smallest 'bubble was 5mm. They decided that they wouldn't know exactly what to do until they actually got in there. They also learned that there was a large blood vessel 'feeding' the cyst that they would have to be very careful about to avoid too much bleeding.

Monday was surgery day and the initial plan of action was to do a diagnostic Laparoscopy, Thoracotomy, and lobectomy (removal of his bottom right lobe)  of his right lung, in addition to repairing his inguinal hernia. At the last minute the surgeon told us wanted to avoid a Thoracotomy because the recovery and risks will be milder the other way.

They took him back at 2:35 pm and told us to expect him to be done at 5:30pm. We waited in the surgical waiting room after we got our sleeping arrangements figured out. We got a message around 5:30pm telling us he was ok, stable, and they weren't quite done yet. We got the same message at 6:30, stable and they would give us another update in an hour. At 7:00pm they told us he would be heading to the recovery room soon and the surgeon would come meet with us in a few minutes.

The surgeon explained that they had completely deflated his right lung during surgery in order to get the best look at the CCAM. Maximus struggled with that and had some respiratory distress. The surgical team worked hard to keep him stable, but they decided they needed to do a Thoracotomy after all. I'm really really glad they told me this afterwards, but the surgeon reassured me that they never let his oxygen drop low enough to cause any sort of damage. He also explained that the CCAM was rather difficult to get out of the incision site, but they were able to get it taken care of. He told us to give the nurses 30 minutes and if we hadn't heard from anyone (the waiting desk was closed by this point) that we should walk to post-op and ask them where Max was.

At 8:00 on the dot we walked down to find him, and a super nice nurse lead us to the PICU (Pediatric Intensive Care Unit) and we walked in to find them finishing getting him settled. It was the most awful feeling of Deja-vu to see all those familiar machines and monitors, but at least I knew what they all meant and what to expect from them. He was, of course intubated and swollen. He was covered in bright orange stuff and was a little pale, but he was perfect and handsome and peacefully sleeping. He continued to sleep while we got updates and everything was settled before we had to leave. They told us they would be extubating him at 6:30 am so we set our alarms for 5:45 to make it on time.

As I learned from our time in the NICU things always change and they decided to extubate him early so we were surprised to be able to see his face again when we walked in at 6:30 am. It was a hard and blur of a day getting him eating again, keeping his pain at bay, and making sure he knew we were there. I am eternally grateful for every person who has ever decided to be a nurse, because it has got to be such a hard hard job. The doctors decided he was doing so very well, he didn't need to stay in the PICU and he could move to his own room on the 3rd floor in the Pediatric Surgical Recovery Unit. We had to wait until a room opened up, but he was ready whenever one opened up. This was a HUGE surprise for us because we had been told he would spend 3-4 days in the PICU and only go to a room before he was ready to be discharged.

Around 4:00 pm while we were getting Maximus ready to eat again his nasal canula came out and fell on the floor, since he had been at 100% on the lowest setting his oxygen machine would go the RN decided to see what would happen if we left it out.
That was over 6 hours ago. That's right, for the first time in his ENTIRE LIFE Maximus is breathing completely on his own.  If he keeps this up, he may not need to even be on oxygen during the day anymore. The thought of bringing him home without being hooked up to an oxygen tank makes me want to cry.

He's hoping he stays oxygen free all night!

I have a sweet baby boy sleeping in my arms right now, which makes it hard to type, but it's sure worth it. Max turned 7 months old on the 25th of October. He celebrated his first Halloween by dressing up as Baby Batman & we hung out at home passing out candy while Daddy went trick-or-treating with E.
Also, Early Intervention came back to do his second assessment. He is still doing wonderfully. They came the day after he turned 7 months old (4 months  adjusted) and he is still beyond his adjusted age!

Language Skills: 5-6 months
Gross Motor:  4-5 months
Cognitive Development:  4-5 months
Fine Motor Skills: 5-6 months
Social Development: 6 months
Self Help Skills: 5 months

16 pounds and 65 cm tall

He is physically very strong and is showing signs of getting ready to eat some 'big boy' foods'
actually, he stole a french fry last week and shoved it straight in his mouth. We got it out before he swallowed or choked on it, but for the next few minutes he kept smacking his lips. Little stinker!

On Friday we went down to PCMC-Same Day Surgery so that they could do a CT scan of his lung.  Since he is still a baby they needed to put him under with anesthesia so they could get clean images. On Thursday the nurses called me to go over the schedule, he wasn't supposed to eat after 8am, and since he has never been under anesthesia they told me he and I were going to spend the night. S and E made arrangements to stay with his sister in Salt Lake, and we packed our bags. I was distraught at the fact that we would be spending the night, because that made the whole thing so much scarier. I distracted myself by packing a bag for E with some new books, stickers, coloring books, crayons and her favorite (non-perishable) snacks since it was going to be a long day for her.
Turns out, I didn't need to! PCMC had so many fun toys in their waiting room she only ended up coloring a few pages and playing with a few stickers since she was so busy playing with the toy kitchen and the other activities. Once they took Maximus back to get his CT we waited about an hour, then the nurses came to get me and take me to the recovery room. The nurses couldn't get him to take a bottle of pedialyte which worried me, until they had me try. He drank the whole thing down in 10 minutes flat, apparently he just wanted his mommy. Once Max moved out of the recovery room S and E joined us and she was so sweet to watch her check him over to make sure he was okay. She patted his back and kissed his head while asking me if he was okay. He sure was! In fact, he did so well and was my normal happy boy with just a little extra sleeping at the 4 hour mark they started talking to the Doctor if we could just go home. S and E had left after making sure all was well so that E could go play with her cousins. I was so excited to let them know that we might be going home.
Sure enough at the 5 hour mark they decided he was doing wonderfully and we didn't need to spend the night. I was so relieved! We loaded up, grabbed some dinner in the drive-thru, and went HOME!

We will meet with the follow-up NICU team on Monday, the pediatrician on Friday, and then we will finalize our plan of action. The CT scan will show us if they are going to be able to remove just the mass in his lung or if they will need to remove the bottom lobe of his lung. They didn't tell me what they found, but I will just have to accept that they will tell me when it is time. Surgery has been tentatively scheduled for the end of November if all goes well with insurance approval. Cross your fingers for us!!

Thank you for all the well wishes, the prayers, and the kindness from everyone. We are so grateful.