We're HOME!!!!!!!!!

After 140 very long days in the NICU, we finally have Nate the Great home!! We were expecting to be going home sometime last week but the NICU staff surprised us last Sunday morning kicking us out. It was absolutely crazy! The doctor decided it was time around noon and we were out the door by 6pm. Since all the doctors and nurses knew we would be leaving, they had most of the process ready but Todd and I had NOTHING ready. We had to go back to the Ronald McDonald House and pack up everything we had accumulated over the past 4 months including 3 coolers FULL of milk. Our car was absolutely packed. Todd had to go to work and pack up his office. We needed gas in the car and the car seat installed. It was madness. 

Nate in his going home outfit with all of his wires and cords off!

Last family picture in the NICU

Ready to go.
It was surprisingly hard to leave.  We are really going to miss the staff that have taken such good care of our boy.  

Nate has done so well being home so far. He has been sleeping amazingly well. He had been in the habit of staying up most of the night in the NICU so we were a little worried about how he'd do. He wakes up for his feedings and goes right back to sleep. He's also in heaven being able to eat as much as he wants. The first few days he went a little overboard and starting throwing up and not gaining any weight so his doctor restricted him just a bit. He now gets enough to be able to grow and feel satisfied but not so much that his body just pushes it through without absorbing anything. He needs to learn that we aren't going to starve him anymore so he doesn't have to stuff himself. Poor kid :(

First family picture at HOME

Nate loves all of his toys but he especially loves looking at his Mickey that Grandma got him. 

The weekly Sunday afternoon nap for the boys.

Day 134

Oh boy! It has been a very LONG week. Little Nate has had a week full of infections, antibiotics, wound packing, morphine, and starvation. The poor kid's incision got infected which, of course, delayed his eating and made morphine induced naps the only way to get him to stop screaming. We all had a lot of sleepless nights which made for one grumpy family :(

Fortunately, the end of this week turned out better than the beginning. His doctor started his feedings back up slowly on Friday and Nate has been a much happier boy. His infection also seems to be improving but another 7 day course of antibiotics is going to be necessary. The doctor is hoping that his feeding issues will all work themselves out by the time the antibiotics are done because those are the only 2 things keeping him here now. I can't believe we could be coming home by next weekend if everything stays on the right track!!!!

Here's hoping this week is full of eating and pooping!!!! :)

Day 125

I have decided that I hate everything about surgery. It really is the worst thing for a little baby (and his parents) to go through. 

Nate's rotten experience started on Wednesday at 2:00pm when the surgeon put Nate on a clear liquid diet in order to make sure his intestines were clean before surgery. He got unflavored Pedialyte for a total of 19 hours. They couldn't even give him something that tasted like fruit punch :(  He was not a happy camper for the first couple of feedings and he screamed for most of the evening. We expected it to continue throughout the night so Todd and I decided to take shifts holding him so he would be more comfortable. I'm not sure if it was the holding or complete exhaustion, but he slept pretty well the rest of the night with only a few real tantrums. 

This was taken right before they came to get him for surgery. We thought he looked like he was pleading for something to eat :) 

They took him down for surgery at about 9 am and didn't bring him back up until 1 pm. The surgeon said it all went well but there was a lot of scarring from his previous surgery so it took longer than she expected. She thinks that because of the extra work she had to do, it might take him a little longer to recover than we originally expected. 

Here is Nate this morning. You can see how swollen his poor little belly is.  He has had a hard time peeing since his surgery so he gained 6 ounces of fluid since yesterday. He is getting Morphine every hour still but they are hoping to start weaning him down more today so they can get him off of the ventilator. He gets pretty agitated with all that stuff down his throat :( Poor guy is feeling pretty rough today.

Day 122

Nate has had an amazing couple of weeks! Here's a little head to toe list of all of his accomplishments.

• Weight: Nate is 7lbs 1.5 oz today! I never thought I'd see him get this big! He is such a cute little boy and is now looking like a normal newborn baby. He's also started to grow a little bit in length too! He's up to 18 inches now :) He has now finally made it onto the preemie growth chart! He's in the 1st percentile for length, and 10th percentile for head and weight. He's going to be our little runt :)
• Brain: They do head ultrasounds on him every once in a while to check for brain bleeds. Bleeding is very common in these micro premies and can cause all degrees of brain damage. They typically do them every week for the first month and then again closer to term. Nate's have always been completely normal but there is still a slight chance that the later one can show a late bleed. He had his final one a couple of weeks ago and it still looked great!
• Hair: We are happy to report that Nate is finally starting to grow some hair! He is still totally bald on the sides but has grown a nice bit of fuzz right on the top of his head. Some Jensen boys grow their hair in to perfect little mohawks for the first year and it's looking like Nate might join the club.
• Eyes: He had another eye exam this week and he is still looking really good. The doctor is letting him go another 2 weeks and said it's pretty unusual for a baby Nate's age to start developing problems. He still doesn't want to say we're totally out of the woods yet but it's looking very good.
• Ears: Nate had his first hearing screen this week. All premies have to have at least 2 hearing screens - one before discharge and one at 6 months. They have also been concerned because there are certain antibiotics that can cause hearing loss and Nate has been on that particular drug multiple times. Good news is...he passed on the first try! They will most likely do one more before he leaves because he will be on antibiotics again after his surgery but this is very good news! He even got a little certificate showing his accomplishment. Todd is very proud of Nate's first award :) 
• Breathing: The little champ is still on room air and has completely stopped having spells! His room is so quiet now without his monitor dinging all day. We never thought it would even be likely that we would be going home without oxygen and caffeine but it's looking like he's going to continue to be good. He is still on his caffeine now but they are planning to try him off of it after his surgery to see how he does.
• Eating: Nate is still an eating machine. They have started to let him nurse for every feeding but have limited him to 20 minutes after they figured out that he was taking about twice as much a he was allowed. Since he is still being limited on his feeds, he is one cranky boy when it gets close to feeding time. None of us are looking forward to after his surgery since he won't be able to eat anything for 1-2 weeks! He is going to be one unhappy little boy.
• Belly: We finally have a surgery date!!!!! This Thursday will be the big day and we have pretty mixed feelings about it. We are super excited to get home and realize that this is the only way that  we can get there but the idea of another surgery makes us super nervous. Everyone seems to think he'll do fine though so we are hoping for a super speedy recovery. His doctor is predicting he will stay for about 2-4 weeks post surgery for healing and getting up to full feedings. We are hoping Nate will be closer to that 2 week mark since he is already eating so well. Please keep Nate in your prayers this week.

Nate playing in his big boy swing. He really likes it but, as you can see, it is a bit overstimulating for him.

Nate's first award :)

His first time in his real clothes. Shirts and pants are a huge pain to put on right now with his IV and ostomy bag so he probably won't wear real clothes again until after his surgery. We are just hoping all of his newborn clothes fit still by then...

Here is how I found Nate sleeping yesterday morning when I came in.  He doesn't hold still, EVER :)

Here's a better look. You can see his binki propping up his face. Crazy kid!

Day 108

Picture day!!

We tried to get a new picture with the dollar but he just would not hold still long enough to get a good one.

Family picture

This picture was taken during Nate's second week. He was so small!

We can't believe how much he's grown! He is our little miracle!

We had to get a video of Nate eating. He sure does love his food! Now if only we could get that food to help him gain weight!

Day 103

Nate has had a stall on his weight gain the past couple of weeks. Just a couple of days after he started feeling better after his infection he got sick again. This time it was an infection in his blood. The poor kid just can't stay well long enough to gain any significant weight. He's at 5 pounds 6 ounces today. We are so close!!!

Since he has been slowing down on weight gain, his doctor has been trying to convince the surgeon to do his surgery early. Especially since he is doing SO well on everything else (more about that in a minute). Unfortunately, the surgeon said she wouldn't consider it :( We were pretty disappointed. These past couple of weeks Todd and I have come down with what they like to call NICUitis. Everyone has been warning us about it and it has finally shown up. We are SO ready to go home!

There has been plenty of good news to go along with the disappointments though. First is Nate's latest eye exam results. The doctor is pretty confident that Nate won't need surgery! We were so relieved! She has bumped his exams to every other week instead of weekly but she said that he will still need to be examined regularly for at least another 8 weeks. There is still a slight chance things would still get worse but it is looking very positive :)

Second huge improvement... Nate has been taking all of his feedings by mouth now for a whole week! No more feeding tube! He is an eating machine. His nurse yesterday told me that she has never seen a baby like Nate nurse so well. I only get to nurse him 3 times a day since they are still keeping close track of his input and output. He has figured out that he gets to eat as much as he wants at those times and takes complete advantage by feasting for 30 minutes! He loves his food :)

Third and best improvement....

Notice anything different?? That's right...no oxygen!!!! He's been doing so well lately that they decided to try him without it. He's been going almost 48 hours now! This is the first time I've every seen his face with NOTHING on it. Can you even believe how big he looks?!

Here are some of my favorite pictures of our big boy from the past week.

I love snuggling my boy :)

Thank you so much Grandma O for the super cute new outfit! I look very handsome in stripes.

He's getting so big that he gets to have toys in his bed now. He doesn't like the mobile but loves looking at himself in the mirror.

Day 92

It has been an eventful couple of weeks here for us which is why it has taken me so long to get another post up. Last weekend, Nate really started taking off with his feeds. The doctors had agreed to let him feed orally whenever he was acting interested. That was all Nate needed to hear :) He was an eating machine! He pulled his feeding tube out last Saturday morning during one of his starving screaming fits. The nurse decided to leave it out until he needed it again to spare him an uncomfortable procedure. None of us thought he'd go without in much longer than a few hours but he went all weekend! He took 12 feedings in a row 100% by mouth. Everyone was very impressed with him being a 36 weeker born at 24 weeks and eating like that. They couldn't believe how well he had done. 

Monday morning he started to tucker out. He was pretty sleepy with his feeds and not really waking up for much of anything. Everyone kept assuring us that it was totally normal and he probably just wore himself out with all that eating and needed a break for a day or so. By that evening, he was just getting worse and we could tell he wasn't feeling well. He had started having a lot more spells and his oxygen requirements were going up pretty quickly. The nurse practitioner on that night finally decided to do some blood work to check things out. It came back showing signs of infection. The next 5 hours were spent getting blood, urine, and spinal fluid samples. Poor Nate didn't even have the energy to cry as they poked him :( It was an awful night for all of us. Infections are a serious thing for these premies. 

The blood work came back the next day showing an infection in his urine. They think he must have had a tummy bug that traveled to his urine. They started him on antibiotics, stopped his feeds completely, and put him back on the CPAP for his breathing. He started feeling quite a bit better by Thursday though so we are very grateful that we caught it early and got it treated. Thank goodness he recovered so quickly. They started his feeds back up on Friday and put him back on the regular oxygen cannula. He's such a tough little guy!

Nate picked the worst week to get sick. We had been planning a little service at the cemetery for Macie and Ellie this past Friday in Twin Falls. We waited this long so Nate would be stable and we wouldn't worry so much about leaving him for a day. It didn't work out quite as panned but the nurse we had that day was wonderful and updated us on his progress every few hours and assured us she would take extra great care of him for us. We ended up having a really nice day. It was, of course, super hard but we felt so much better knowing that they are safe and taken care of. Todd and I spent some time that afternoon at the cemetery and then went to the temple. The temple trip wasn't planned but once we were there we realized that there was no better place to be that afternoon. We are so grateful for our little girls and the time we got to spend with them. We love them so much!

We also want to thank everyone for all their support on Friday. The flowers that were waiting for us at the cemetery were absolutely beautiful and the dinner waiting for us at our apartment when we got home was perfect. Thank you!! We are so lucky to have so many great people to call our friends and family. 

Today is Nate's 3 month birthday :) He is 5 lbs 3.8 oz and 15.5 inches long. He has come such a long way! 

Nate's new super cute hats. Thanks again Jamie!

He always has his hands somewhere by his face while he sleeps.  He is such a funny little boy!

I love this picture :)

Guarding his binki