Two weeks

Our sweet little Max is two weeks old today. It's so weird because it seems like I was still pregnant yesterday but it also seems like we have been in Bismarck for months! 

As of this morning, Max has NO TUBES on his face! He was down to his ng tube this morning and after I nursed him at 9 and we left, he pulled his tube out. He has been taking all his feedings by breast or bottle so his nurse just left it out, and hopefully it doesn't have to go back in!

Neil and the girls left this morning for Baker after we fed Max so Neil could go back to work. A good friend is going to keep the girls during the day so I can stay here with Max until he is ready to come home, which will be sometime this week. He needs to get out of his isolette and into a crib, get circumcised and continue to gain weight from taking all his feedings orally and we will be headed west! I'm hoping tomorrow he will go into a crib and if his blood work comes back clear he may get his circ done tomorrow or Tuesday. It's hard to say because they switch doctors tomorrow, so this is just what the nurses are telling me they think will happen! 

It's been quiet here since everyone left, but I got some great snuggling in with Max this afternoon and I'm just going to enjoy the calm before Max and I go home to find a new normal.

Room air

Max had another good day today. He got his cannula taken off so he is breathing room air. His antibiotics are discontinued as of 11 pm tonight, but his nurse said they will probably leave his IV in his hand for a bit to make sure they don't have to do another one if something would come up. 

He did all right nursing. This morning he was pretty sleepy and didn't do much and this afternoon he took 40 ml, or 1 oz. Neil bottle fed him the rest of his milk this morning and we tube fed him at 6. Their
shift change messes with his 3 pm feeding so we push it back go 3:30, then we are getting into their 7 pm shift change if we feed him at 6:30 and he's not hungry at 6 so we thought we'd just let him rest and get tube fed, and I'll go feed him at 9.

I'm hoping with him taking the bottle he will get out of there a little faster. I'll switch him to breast when we get home, that's my plan for him anyways! 

Plugging along

Max ate great last night. They weighed him before and after he nursed and he ate 2 oz each time.  

He has nursed every 3 hours today and not ate as well as he did last night, but he is doing better than everyone thought he would for as sick as he was. He took 1 oz this morning, slept through his noon feeding, ate 1 oz at 3 and 6. 

They want him to be taking 2 oz each time so they tube feed whatever he is short after he nurses. 

He is still on oxygen, but his doctor is planning on taking it off tomorrow or Sunday. It isn't hurting anything having it on, it actually helps him heal  if he doesn't have to work as hard to breathe, and he has to be in the NICU until Sunday because of his antibiotics anyways so if it's helping him heal, it's a good thing! 

After Sunday, when he will get out will depend on how he is nursing. In order to go home, he has to have completed his 10 days of antibiotics, which is done on Sunday. He has to be breathing room air, which he will be doing, and he has to be taking all his feedings orally. I will keep going up for all the daytime feedings and will have them give him a bottle at midnight and 3 am. Hopefully we will en outta there shortly!!

Best day yet

Today was another huge day for Max, mom and dad got to hold him! He was so relaxed and slept when we held him, it was awesome! He got his umbilical line removed this morning so he does have an IV in his foot. 

 He is weaned down to 1/4 liter flow on his cannula and 40% oxygen. They are going to try and get him down to a regular cannula this afternoon. 

Max got a new bed today too, he got moved into an isolette after we held him and we can take clothes up there for him to wear now. 

Tonight, we get to go in and see if Max will nurse. Dr B said to not get upset if he just wants to snuggle and sleep, or if he tires out after a short while of nursing because he was so sick, he's not going to have a lot of stamina, but we have to start so we can get him out of there! 

He just continues making strides in the right direction. Before we know it, he will be home snuggling with us! 

We went up and saw Kynlie's doctor and nurses this morning, it is so great going up there, they all came out to see her with big smiles on their faces! Of course , she want the most social of little girls. When we were walking up there though, she asked where Locklyn's nurses were, we go see Kynlie's nurses and Max's nurses, but where are Locklyn's? It was pretty cute!

We found Kirsten's ornament on the tree at the hospital for babies that were taken too soon. 

Happy New Year

Max is continuing to improve. Today he was off CPAP and on a hi-flow nasal canula. He was only at 1 liter flow, 50% oxygen so it isn't giving him too much pressure. His oxygen saturations have been excellent and his nurse said she wouldn't be surprised if he is on a regular nasal canula tomorrow.
They took out his UAC, which was the line that went into his umbilical cord and into an artery. His UVC, which is the line to a vein isn't sutured in anymore and his nurse said it will probably be out tonight or tomorrow. There is great and bad to that- the great is, we will get to hold him when it is out, the bad is he will have to get an IV put in to get his TPN, Lipids and antibiotics and they will have to poke him to draw blood.
His CRP level in his blood that is an indicator of inflamation that they have been watching did not come down today, which isn't good- but, the inflamation could be caused by a number of things other than the infection. He was intubated for quite a while, which can inflame the throat, the CPAP went into the back of the nose and can iritate that. He has had a urinary catheter, so they didn't even have to change his diaper when he was very sick, and he has had that in since Dec 24 and that can cause inflamation as can the UAC and UVC. By eliminating all those lines running into him, they can tell if the inflamation is still from the infection or from one of those irritants.
Max was resting very peacefully both times I was there today

We get to see more and more of his face every day

But he likes to sleep with his face covered up!

New Years Surprise

Max had a little surprise for me when I got back to Bismarck this afternoon- he has been extubated! No more ventilator!!  He is now on CPAP, but both his nurses today said they think he will be on a nasal cannula tomorrow.
He is now off all his medicines besides his antibiotics. No more morphine for sedation or dopamine for blood pressure.
He also got his first bath today, after 9 days! He looks so much better now that he isn't a little greaseball. I also got to see him with his eyes wide open for the first time tonight. He is a pretty handsome little guy!
They weighed him after his bath too and he has lost quite a bit of weight. He went from 8 lb 6.6 oz to 7 lb 7 oz. He has just got started on lipids so that should help him gain a little of the weight back. He is still just getting 5 ml of breastmilk through his NG feeding tube, but his nurse said as soon as the morphine is out of his system and his intestines start being a little more active they will increase his feedings.

Weaning

Max is now in the process of weaning. Off the pressure on the vent, off the O2 on the vent, off all the medicines he is on. This morning he was down to 50% oxygen and at 30 breaths per minute. They had just started to wean his pressures down and he has so far tolerated it today. 

They stopped his versed drip do now the only sedative he is on is the morphine and that is also to control any pain he may be in. I just talked to his nurse and she said he is starting to move around a lot more. They are also weaning him off the dopamine for his blood pressure. 

They are also starting to give Max tiny amounts of breast milk through his OG tube, just to get his guts working. 

Neil's family came over yesterday to see us and Max. Then Neil and the girls came home with them for Neil to get a few things done at work. I came home this morning after going up to see Max. We are having a birthday party for Locklyn tonigt, going to have Christmas tomorrow morning before Neil goes into work and I will head back to Bismarck. Neil and the girls will come back sometime tomorrow or Wednesday and stay through the weekend. We will see how Max is doing and how much longer it is sounding like he will be in the NICU and come up with a plan from there.