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.

Halloween

Kynlie's Halloween started out early today with a party at her preschool.

 She wanted to be a kitty again this year. This is her 3rd year being a kitty, funny thing is, she doesn't even like cats!

 Locklyn was supposed to be Minnie Mouse but wouldn't take her pumpkin shirt and tutu off. This is how she left the house this morning to take Kynlie to preschool!

 The little girl has BIG attitude!

 We trick or treated at the nursing home and ran around to our family and the girls lost it when we stopped at home to eat supper.

 I put them to bed early and now am the mom sitting downstairs with the kids' candy bucket and the lights off so no one rings the doorbell and wakes the girls up!

Hope everyone had a very Happy Halloween with more treats than tricks

Still behind

Surprise, Surprise, I'm behind again!

 

Things have continued to be as busy as ever and I don't anticipate anything slowing down in the next few years!

 

Since I missed the months of August, September and October I'll do a little recap

 

August we did a couple more kids rodeos, the girls both love it. Kynlie and Locklyn both started riding JJ on their own and do great. It helps that he is about the best horse in the whole world! We couldn't have gotten any luckier getting him!

 

Neil won Baker's Demolition derby and as always, put on a great show, I LOVE watching him derby! He went to Miles City the next weekend and took second.

 

Labor day Kynlie went down to the cabin with Lee and Linda so Neil and I took advantage of only having 1.5 kids and fixed some of the things on the house that got damaged in the hail storm.

 

We also snuck in a kid free trip to Bismarck to their parade of homes to get some ideas for when we build next spring. It was a great weekend and we ended up finding quite a few things we will do in the new house.

Kynlie had her 4 year checkup the beginning of October in Bismarck, my mom went along to help with the girls as I had an ultrasound and dr appt in the morning. Baby is still doing well, a little on the big side. Kynlie weighed 37 lbs and was 42" long. Both above the 75th percentile.

 

Kynlie did the recreation department's sports sampler and now is doing their crafts. She is still loving preschool and asks almost every day if she gets to go to preschool today.

 Her and Neil shared a birthday party again at Grandpa Lee's game room and Grandpa was so awesome about it, he even cooked supper for all our guests! He's the best!

 Locklyn has developed a dislike for clothes and spends most of her time running around naked, which prompted me to start potty training her a little early. She does pretty good most days. We still have to get he pooping in the potty down but it will come. She was staying dry in panties all day for a few weeks then decided to stop going on the potty at all, but we just keep plugging away and she'll get back to it again!

 October 14, my brother called and said they were going to be having their baby that day. Dad couldn't get off work early so mom, the girls and I loaded up and headed down to Sheridan, WY to see the new baby. Dad and Neil came down after work. The girls both said the baby was going to be a boy and they were right. We welcomed Raymond Patrick to the family that evening.He is perfect in every way and sweet as can be.

 Kids couldn't go into the birthing center so we had to try and keep them entertained while everyone was in snuggling Raymond. My cousin came and got them one night and took them to her house, which was a lifesaver.

 They did get to see him through the nursery window and were pretty excited about that

 Last week we carved and painted pumpkins before daddy left to go elk hunting. The girls loved it and made a mess out of themselves with the paint.

 Since daddy left for hunting, we went back down to Sheridan to snuggle the sweet new baby again. Kynlie and Locklyn loved him and had a hard time taking turns holding him. Kynlie couldn't walk by him without stopping to look at him and smile and say "He's so cute" or "He's so tiny." 

 Locklyn held on to him tight and smiled the whole time she held him but still tells me "NO!" when I ask if we should have a baby like that!