HOME

Max and I are home and working in getting settled in. The girls are in Heaven having mom and baby brother home! 

Max got discharged about 11:30 cst yesterday, one day short of his 3 week birthday! I stopped at Mcdonalds drive through for lunch and we were headed west. He was a perfect traveling partner. He slept until we got to the 4 way stop in Baker!

I am mostly unpacked, got all the laundry done and am starting to feel like I can relax and enjoy being home.

Max slept great last night, sleeping for 5 hours, then again for 4. I can't complain about that!! 

Tomorrow we head to Dickinson for Locklyn's two year appointment so we don't get to enjoy being home too much! 

Max has to have a follow up appointment in Dickinson in one week and in Bismarck in two weeks, I have my 4 week follow up for my cesarean the same week he has to go to Bismarck so I'm hoping we can get them to work together to save a trip. 

We will be breaking Max in hard and fast for how much we travel, with his appointments, we have tickets for Disney Live in Billings the end of January and tickets to go to Hawaii to see my sister and her family the beginning of February!! I asked Dr F if Max would be healthy enough to go that soon and he said the sea level fresh air and sunshine would be good for him. He thought maybe it sounded good for himself too! 

Busy

The NICU has been crazy busy the last couple of days so they have had more nurses up there than usual and I'm not sure if yesterday's nurse was a normal NICU nurse or not but I hadn't seen her up there before. She's the one that told me that Max wasn't getting anymore nebulizer treatments yesterday morning, but he still is getting them. They had just done it before she had got there and would do the other one after she left so nothing was said to her about it, so anyways, he is still getting two Pulmicort treatments a day. 

Max had a huge day today, Dr F came over this morning and asked if I was ready to take that boy home yet, of course, I told him yes!! He then asked if I wanted him circumcised, which I also said yes to. He said he could do it today and if Max continues to breathe as good as he has been, we get to come home tomorrow! I didn't want to post anything because I don't want to jinx myself again but it is too exciting not to share! 

Max got snipped at 11:30 and he was not a happy camper after. But after I finally got him calmed down, we got some great snuggles in. 

I came back to pack and clean
up the room at the Ronald McDonald house  and get ready to put this chapter of our lives behind us! 

Please pray that Max continues to breathe like he should and that we get to hit the road in the morning and go home, to start our lives as a family of 5!! I'm so excited I can hardly contain myself!!

Better

Max is breathing much better today. His respirations slowed down after his nebulizer treatment last night, so he hasn't had to get another one this morning.

His night nurses have said Max is quite the party animal at night too. That's when he wants to be wide awake and snack all night long. He is content as can be, they just feel bad he is wide awake laying in his crib looking at nothing, so they cuddle him and rock him and give him all the attention he could possibly want! I thought one benefit of having a baby in the NICU is that they are on a great schedule when they come home, not Max! He sets his own schedule! 

Dr F said this morning if Max continues to breathe slower we could possibly be out of here this weekend. Please pray for Max to continue to take slow deep breaths and continue to get better. It's funny because every time Dr F talks to me about Max, he will tell me what's going on, followed by "We have to remember he was a very very sick boy." In his strong Spanish accent. It cracks me up every time he says it. I can't remember if I ever did say what Max's official diagnosis was, he had bilateral pneumonia, pulmonary hypotension and sepsis. He was a very very sick boy, I was actually more worried about him than I ever was with Kynlie. Kynlie never was horribly sick, she was very small and very fragile but luckily she was as healthy as you can be at 1 lb 4.5 oz! It was definitely scary when she was born, and for the few weeks after, but for some reason I just knew she was going to be fine. Max was so sick and I was very afraid he might not make it. 

Once again, the power of prayer worked wonders and Max is mostly mended up and hopefully will soon be on he road to Montana. 

Official results

We got the official results of the MRI this afternoon and everything looks perfectly normal. Dr F said they did an in depth MRI that looks at all the white matter in the brain and everything is perfect.

Max had one dose of his nebulizer this morning and was getting his second one tonight when I left tonight but so far his respirations hadn't slowed down from the one dose this afternoon. Praying that the second dose will help him slow down. He is not struggling to breathe at all, just takes shallow fast breaths.

Another day

Max will be spending yet another day in the NICU. He has been breathing fast and shallow the last 24 hours. Dr F gave him an oral dose of Lasix to help get rid of any excess fluid, if he has any. He also is having Max get a nebulizer treatment of Pulmicort twice a day to reduce any inflammation that he may have lingering in his lungs from the pneumonia to see if it will help slow his breathing down. 

Max had his MRI this morning and Dr F hadn't got the official results when I left the NICU but he said from what he can see, everything looks normal.

He also had his hearing test last night which he passed on the first try. 

Max has been eating great, he is still taking about half by breast and half by bottle but he gained an ounce and a half so whatever we are doing is working!

It breaks my heart every time I talk to Kynlie because she keeps asking when I'm coming home. I miss her, Neil and Locklyn and I know they are having fun at their friends house and dad is way more fun than mom is, but it is way too quiet here for me! I hate to say it but I even miss Kynlies pathetic whine!

Crib

Max got to move into a crib today!! His nurse had his new bed all ready for him when he got done nursing this morning. 

He had a good night last night, eating 3 oz every 3 hours. He gained a little less than an ounce when we weighed  him at 9. He has had quite the appetite lately! 

Tomorrow, Max will have an MRI at 10 am. It's just something they do because of how sick he was for so long, to make sure there was no damage done to the brain, and to get some baselines in case something would come up in he future. 

Depending on how Max does in his crib today and how his weight gain is tonight before his bath, Dr F may do his circumcision tomorrow and possibly home Thursday or Friday. 

Backfire!

So, here I thought since Dr F knew Max's background from day 1 that he would get him on the fast track out of the NICU, but my idea backfired. Since he knows exactly how sick Max was, he is concerned about putting him in a crib today because he thinks that he will use too much energy maintaining his body temperature and not have enough energy to eat and continue to gain weight. So, no crib today, probably not going home on Wednesday. Insert sad face here.

The good news is that Max's blood work all came back great. Dr F was a little concerned because Max had his urinary catheter in for so long that there may be some sort of fungal infection and he may need more antibiotics, but everything came back clear! He would have been able to go home on the antibiotics though, but because everything was good, Max got his IV taken out of his hand this morning. 

Now it's just a waiting game. Waiting to see if Max continues to gain weigh so he can get put in a crib. Waiting to see how long he has to stay in the crib before he gets to go home. I hate waiting! But, I'm sure his doctor knows best, just seems silly to keep him in the NICU when he doesn't need anything but to continue to grow!

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. 

Big Day

Max has had a huge day today. They were able to get him weaned completely off the nitric oxide this morning, then just as his nurse was telling us that he would probably get switched over to the conventional ventilator tomorrow, the respitory therapist walked in with the vent and switched him over. That was at about 11 this morning and he has been doing amazingly well on it with all his blood gasses since coming back perfect.

They have been weaning him off the dopamine for his blood pressure and so far he has tolerated it very well. They have taken him off his epinepherine and stopped giving him his extra sedative medicines so now he is moving all over the place! You have no idea how nice it is to see our sweet boy actually moving! They are also starting to give him Lasix again so he can start peeing off all the extra fluid he has accumulated. Since he had so many tubes for the oscillating vent and nitric, they couldn't turn his head, so he has been laying on the left side of his head since Wednesday and he had quite the misshaped head from all the fluid accumulating around his scull. Now that his head has been turned, it is a normal shape again, still a little puffy but he doesn't look like such a square head!

He had an echocardiogram this morning to check the PDA in his heart and everything looked perfect.

Dr. F said we will be amazed how fast things will change now. His nurse said if he continues to improve that we could probably figure on being here at least two more weeks so that's what we are hoping for!

We also got to see his adorable face a little better. His nurse was nice enough to take his glasses off for us to snap a few pictures, he even tried opening his eyes for us but they are pretty puffy so they didn't open much. Soon, we will get to see him without anything on his face and hold him- I can't wait to be able to hold him. It was 11 days before I was able to hold Kynlie, he better not make me wait longer to hold him!

Locklyn's mini-me, with dark hair

And we are going up again

Max is having a much better day today. He had a great night, his o2 and blood pressure were stable all night and morning so they decided to start to wean him off the Nitric Oxide again. He was down from 20 ppm to 10 ppm when we were in there around 11 and his blood gasses were coming back great. They are still keeping him very sedated to just let him rest and heal. Possibly tomorrow they will start slowly weaning him off the oscillating vent again and onto a normal one.
His blood work continues to improve  and Dr F said he can tell by how Max is acting that he is definitely feeling better.
Neil and I got to go in together and see Max together this morning too because Desiree Bondley was nice enough to let is take the girls out to her house  for a few hours this morning. We appreciate it more than you know Desiree! Thank you so much!!
Today is also a very sweet little girl's second birthday, Happy Birthday Locklyn Grace! Mommy and daddy love you sooooo very much! We had cake and sang happy birthday to her at the Ronald McDonald house and opened up her presents. We will try and do a small party for her on Monday if the weather and baby cooperate with me getting home for a night!

Let the roller coaster ride begin

Max had a great day yesterday, they had weaned him from 20ppm down to 2ppm on the Nitric oxide and were talking about switching ventilators today. He was down from 100% oxygen to 85%. He was tolerating us touching him being handled a little better.
This morning, Max was struggling with all the noise in the NICU. He was waking up a little bit as he has developed a tolerance for the sedation medicine and he started desatting and couldn't keep his blood pressure up. They put his nitric back up to 20 ppm and his oxygen back to 100% and added another blood pressure medicine. We are back to not being able to touch him and as little stimulation as possible. They have added another sedation medicine and are talking about changing the medicine so he doesn't have to get the medicine so often. His blood work and chest X-ray are looking better, now we just need him to physically get better
This is so much harder than when Kynlie was in the NICU. Here we were expecting to take a big healthy baby home in a couple days and we have barely got to touch him or see his face. Dr F did say he is finally stable, but he still isn't doing great.
The girls are being troopers. We found a waiting room on the NICU floor that has a tv in it so they can at least watch some Dora or Mickey Mouse while they are waiting for Neil or I to be in with Max. They are coloring a lot of pictures and getting a lot of snacks to keep them occupied!

Max update

Max has been doing much better the last two days. Today, he even tolerated me holding his hand for a while! They are going to give him a transfusion as his hemoglobin is low from all the blood draws he has had done. They put him on some stronger antibiotics that cover a wider range of infection yesterday and today his blood work had improved. After his transfusion they are going to start weaning him off the nitric, then the vent. His chest X-Ray had shown quite a bit of improvement from yesterday's. He will also start getting lasix to  help git rid of some of his puffiness. Yesterday they started giving him TPN, which is just some nutrients and when he is feeling a little better they will start giving him some lipids.