Day 47

So it turns out Nate's weight yesterday was a little of both scale error and fluid build up :( He lost 2 oz but he's still over that 2 lb mark! A couple days ago the doctor took Nate off the diuretic that he's been on for the past week. Last night his oxygen needs almost doubled what they have been and he started looking very puffy. He decided Nate needed to start them up again. That will most likely mean another day of weight loss but we don't really want water weight anyway. Once he got the medication on board again, he has been breathing and looking much better.

Nate also had a big day for poop! Since his belly surgery, his poo comes out of a little opening, or stoma, just to the side of his belly button. Until today, they've kept it covered with little pieces of gauze and change them when they change his diaper. It's worked quite well until the last week or so. He now gets poop everywhere! No matter what the nurses try to do to contain it, somehow he seems to make a huge mess. There are stoma bags that can be attached to his belly to catch everything that comes out but the surgeon doesn't like them on tiny babies. She wanted him to reach 1 kg before he could have one. Since he soared past 1000 grams yesterday, he was fitted for a bag today. The nurses are very happy they no longer have to change his bedding and bathe him every 3 hours and I held him today and stayed clean for the first time all week :)

Day 45 & 46

Nate is growing like a weed!!! He flew past the 2 lb mark yesterday weighing in at 2 lbs 2 oz. This morning he decided to get almost half way to 3 lbs. You read that right, Nate's weight this morning was 2 lbs 6.4 oz!!!! Now, the doctor isn't convinced that this is real weight. He thinks most likely it's either fluid build up or scale error but we're going to see what he weighs tomorrow to know for sure.

Nate is also starting to grow in length. He was 11 1/2 inches long (3rd percentile) when he was born. We knew we had no hope of having tall kids but Todd started to get concerned when he dropped down to the 1st percentile. His poor growth curve for length was a flat line. He finally had a growth spurt though! Last week he measured in at 12 1/2 inches and this week he was 13 1/2 inches. Now Todd's convinced we've got an NBA player. I'm not so sure :)

Other than some major growth, the past couple of days have been quiet. Boring is good in the NICU! Health wise, Nate has been doing really well. Normal naught boy behavior has been a problem though. I think he has decided that now that he's 2 lbs he's too big for all of the silly hospital stuff. He has become very good at pulling out his feeding tube. The nurses try and tape it down but Nate always finds a way to get it out. He pretends to be sucking on his thumb and then hooks it under his tube and gives one big pull. He has also decided that he no longer needs his CPAP mask. All day today he would grab the mask over his nose and push it off to one side, just enough for it to be useless. His oxygen levels have been going down more often today so we started watching him. Sure enough, every time he'd have a spell, we'd look in and his mask would be off. Naughty boy!!

I only have 1 picture of Nate to share today and it requires a little explaining. Nate has had many roommates during his 6 weeks here. Most of them are here for just a few days and then get sent home. His latest roommate came in last week. He is a full term baby and quite big but he has a lot of health problems and will be here for a while. He had surgery a couple of days ago and has been been in quite a bit of pain. He's been sedated for the most part but he'll wake up every once in a while screaming. This kid is loud!! The doctor tried cutting back on his pain medication today which they quickly learned was a big mistake. He screamed for an hour and a half straight. Todd peeked in at Nate during the chaos and found him like this...

Day 42-44

Nate had a very busy weekend. He had loads of visitors on Saturday. We love visitors but I think we over did it with him this weekend. He had a rough evening after everyone left. Being cute for everyone is a lot of hard work for such a little guy. His nurse told us we need to be careful to limit visitors to 1 or 2 throughout day for just a few minutes. Oops...we'll have to coordinate better I guess :) Sometimes we forget how sensitive he is.

Nate also had his first Mother's Day :) He did a great job. His nurses helped him make me a card and Todd gave up his day to hold him so I could have some extra snuggle time. Nate also decided to get me a present all by himself. When I was putting him back in bed after holding him we discovered that he had pooped. This wasn't just any poop though. It was a full blowout poop. We were both covered! The nurses teased him the rest of the day. They are trying to teach him how this whole Mother's Day thing works so he'll know what to do next year.

Nate had his share of ups and downs over the past few days but overall he's doing well. The doctors aren't planning any major changes for him. They just keep waiting for him to get bigger. We are starting to think that Nate is afraid of getting too big. He just won't quite get himself to the 2 lb mark. Yesterday he weighed in at 1 lb 15.5 oz. We thought for sure he'd make it to 2 lbs today. He's a little trickster though and decided he'd stop at 1 lb 15.9 oz! Little turkey! He's so close!!!

Day 41

No big changes for Nate today. The doctor is going to go up on his calories just a bit to see if we can get back to some good weight gain. It has slowed down quite a bit over the past few days. That and another blood transfusion and hopefully he'll be one happy boy tomorrow. Other than that he's been a little champ! Since he's been so good, I'll make today a picture day :)

Nate's breathing mask works by puffing air down into his lungs to keep them inflated. He has a nasty habit of hanging his mouth wide open. When he does that the pressure meant for his lungs comes right out of his mouth. We have tried to come up with creative ways to get him to keep his mouth shut but none of them have worked too well until this one...

The chin strap has worked well for Nate for the past week or so but after his throwing up incident on Tuesday they decided the chin strap might not be the best option for him. This picture is dark but while I was holding him last night I tried to hold his mouth shut so he wouldn't have such a hard time keeping his oxygen levels up (I have spent many hours sitting next to his bed holding his mouth shut...little stinker) He grabbed my finger and held on for an hour and a half. My wrist was totally cramped up by the end but it was totally worth it :)

Last but not least...some of Nate's many cute sleeping positions. He has to have his hands up by his face. If you swaddle his arms, he will NOT sleep. I'm pretty sure I take a new picture of him sleeping every day.

And my personal favorite...

Is he not the cutest thing you've ever seen?!?!

Day 40

Nate is 30 weeks today! I can't believe he's been with us for nearly 6 weeks already. Time is going by so fast. Nate's nurse today was one of the nurses that was with Nate and Ellie during their first week. She was there the day I got to see them for the first time. I hadn't seen her since until today. She was one of our favorite nurses during that very difficult week and seeing her today reminds me just how far we have come this past month. Nate had a quiet morning. The doctor was very pleased with him when she came in to see him and said she's not changing a thing. We like days that allow Nate to just rest and grow. Those are days that mom and dad get to relax a little bit too :) I was able to talk with one of the nurses yesterday about some of the things that we can expect when Nate comes home. Apparently life at home with a premie like Nate is a lot different than life with a healthy baby. She said he'll have chronic lung disease. If everything keeps going well, he'll grow out of it once he hits about age 8 but the first couple of years are going to be difficult. We are going to have to be very very careful not to get Nate sick. A tiny cold to us can mean months in the hospital and could be fatal for his sick little lungs.  Nate is going to have to stay home with very limited visitors for the first 2 years of his life. No church, no grocery store, no playdates, no children over at our house, and no adults that have been exposed to even the tiniest sniffle. I knew that we were going to have to be careful but I don't think I realized just how different our lives are going to be.

Day 39

Nate had a much better day today. When I got to the hospital he was getting 22% oxygen. That's much better than the 40% he was up to yesterday. I think it was his way of saying sorry for giving me a heart attack and a lot more gray hairs yesterday :) He had a follow up chest x-ray this morning which looked a lot better so he will stay on the diuretics long term to help keep the fluid in his lungs under control. The doctor also started his feeds back up again. He is pretty sure what happened yesterday was just normal baby spit up that went the wrong direction. That's reassuring because throwing up can be a sign that his tummy is not tolerating his feeds and they would have to stop them long term. He can get all of his nutrition through his IV but it is hard on his little liver so oral feeds are the best for him. Although it's unlikely, getting to all oral feeds without any IV nutrition is ideal for him. As far as weight gain, the doctor didn't expect any yesterday because he was given the diuretic and would lose all of his water weight. He anticipated about a 2 oz loss for him. Good news is he only dropped about an ounce! 2 pounds, here we come :) This evening we were able to meet a family that was in a very similar situation as us 3 years ago. They volunteer to help other parents cope with their stay in the NICU. They had twin girls born at 25 weeks and lost one. Their little girl is now 3. We have visited with them at the hospital before but tonight they came over to the house with their little girl. It was so great to talk with them and be able to ask them questions. Having someone to talk to that has been in the same situation has helped me more than anything else. We are so grateful to them for taking the time to help us.

Day 38

They always tell you in the NICU that there will be many ups and downs. They say that and I think I understand but it seems I always forget that when he's having a good day. Every good day I can't help but think the worries are over. I know they tell you that so you're not so disappointed on the bad days but it's so hard to remember. Nate went back a half step this morning. His oxygen needs went up to about 44% which is quite a difference from the past couple of days. The doctor thinks he's probably taking on fluid in his lungs again so they did a chest x-ray and will start him on some diuretics again. He seems to respond to them well so hopefully he'll be feeling better tomorrow. Poor little guy . His morning wasn't all bad though. He did gain another ounce and a half. He's so close to that 2 lb mark! Keep growing Nate! He also had a visit from his occupational therapist. She works with him once a day stretching his arms and legs and massaging his face and head. He LOVES it! It's so cute to watch him. He gets his grumpy face ready as she unwraps him and wakes him up but as soon as she starts stretching his legs his face just melts into the most content look. I can just hear him thinking "Ooo that feels nice". He is such a funny boy and everyone just loves him. This afternoon he gave us a good scare. Todd and I had just left to get some lunch. Half an hour later the hospital called. It's never good news when you get a call from them. Nate had vomited some of his milk and his breathing mask pushed it through to his lungs instead of letting it out. Apparently he struggled for quite a long time and ended up needing a lot of help to recover. By the time we got there he was doing better and an hour later he was back to where he had been previously. The doctor said that was a good sign and they most likely wouldn't have to put him back on the ventilator. They did totally stop his oral feeds though and inserted a tube down to his belly to keep everything suctioned out for now. Lesson learned today...good day for Nate = good day for mom. Bad day for Nate = mom being a crying mess and not wanting to leave the hospital.  Let's hope tomorrow is better.