Monday, January 20, 2014

One week

Well, we all survived our first week as a family of 5! The girls are adjusting well to having max home and have already figured out to wait until I start feeding Max to get into stuff or fight! 
Max is doing great! He had his 1 week NICU follow up in Dickinson this morning.  He was 21" long and weighs 9 lb 9 oz. I asked the nurse to re weigh him because he weighed 8 lb 1 oz when he left the NICU 9 days ago, that's gaining over 2.5 oz a day!! 
That brings me to my next topic. Max has been nursing great! He is eating every 3 hours without taking a bottle most of the week, which tells me by how much weight he gained that he is eating enough! 
Dr O said his lungs and heart sound perfect and that he is gaining enough weight that she isn't concerned about him puking as much as he is. I just have kids that puke. 
She also said that she doesn't want to see him again until his regular 2 month checkup. She said it isn't worth exposing him to all the germs at the clinic unless there is something concerning we think he should be seen for. She also wants his hearing checked again at his 2 month checkup because the gentamicin he was on in the NICU can cause deafness or hearing problems. He passed his first hearing test and he hears things because he startles at noises but it's better safe than sorry! 
I wasn't brave enough yet to take all the kids by myself to Max's appointment by myself so Kynlie got to go to work with Aunt Connie this morning. She had a blast working, thanks Aunt Connie!

Monday, January 13, 2014

2 year check

Locklyn had her 2 year check up this morning in Dickinson. Her pediatrician said she is perfect! She weighs 31 lbs and is almost 36 inches tall, which is close to the 90th percentile for both.
That was our first outing as a family of 5  and it felt good to finally be doing things as a whole family!
I had taken Locklyn to the doctor in Baker the beginning of December because she had been having a lot of bruising on her shins and back. We have had quite a few kids in my family with leukemia and I was just sick to my stomach waiting for the results of the blood work to come back. They came back that she was quite anemic. Everything else looked great, I did have them send her results and clinic notes to Dr O so they had record of it there and to see if she wanted to see Locklyn any sooner than her appointment we already had scheduled. Baker did labs again on her a week later and everything came back fine so Dr O said we could just review everything when we came for the scheduled appointment. She said today that there is nothing that concerns her and she thinks it is just normal two year old bruising. She said she actually thinks that the anemia was a false read and that if they would have re ran the blood it wild have came back normal because it was quite low and a week later was normal and she said it will not resolve that much in that short of time. It was reassuring having her not be concerned at all because Locklyn still bruises quite a lot.

Sunday, January 12, 2014

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! 

Friday, January 10, 2014

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!!

Thursday, January 9, 2014

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. 

Wednesday, January 8, 2014

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!

Tuesday, January 7, 2014

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. 

Monday, January 6, 2014

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!

Sunday, January 5, 2014

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.


Saturday, January 4, 2014

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! 

Friday, January 3, 2014

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!!

Thursday, January 2, 2014

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. 

Wednesday, January 1, 2014

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!