Our Family

We had our family pictures done today. For some reason when I scanned them into the computer, they turned out a little grainy like. Pictures went well, except that Kai wasn't happy. Gavin and Jace did very good. Jace ended up with some kind of rash on his face today. At first I thought it was from one of the daycare kids who pinched him in the face, but then it started spreading a little. It seems like that also happens right before pictures. Just like Gavin got a little bit of a fat lip yesterday (you can't really tell in the pictures). Him and a daycare kid were goofy around and Gavin got a foot in the mouth. Silly kids!!!

Kai is 6 weeks old!

Today Kai is 6 weeks old. I just can't believe it has been that long already.

Kai is doing good. He now weighs 7lbs 4 ozs. He is growing out of a few newborn sleepers. His feedings are improving. We bottle him about 3 times a days and he has been taking on average 20 mls from the bottle before he gets tired. His total amount at each feeding is now at 60 mls (30 mls = 1 oz). When he is awake and not fussing, he is very alert. He started OT (through early intervention) this week. She worked with some positioning. One of the positions is him in this bean bag. He is leaning somewhat towards his left side. He favors his right side a lot. His head on that side is get very flat :( She also worked with some range of motion. Hopefully by doing these other positions, this will help him to not favor his right side. The other night we had an interesting bath night. We gave Kai a bath. Towards the end when we were getting him diapered and dressed, he started vomiting. It was kind of scary for me considering he is so little. I held his head and chest up a little and tilted him to the side so that he wouldn't choke. At first we thought it was because he had eaten right before his bath and he was crying a lot during bath time, but his vomit was not formula. It was yellow and foamy. We finally figured out why he vomited. I clean around his G-tube with peroxide. Some must have gotten in the hole and into his stomach! It couldn't have been much considering I just put some on a Q-tip and then cleaned, but I guess it was enough. I felt so bad after that. I think we will just stick to soapy water when we clean that area. Gavin and Jace are doing good. Jace is improving on his speech. His teacher comes out every week now. There are times that he really searches for the words to use. Both of them are growing up so fast already. We just can't believe it! Gavin is almost done with ECFE. I'm sure he will be disappointed, but at least he will still have Sunday school to go to. We are getting our family pictures done on Tuesday. It is hard to pick out clothes so that everyone matches. Soon we will be putting up our Christmas tree. I can't believe how fast time is flying. The boys are getting excited about Christmas. Until next time!

My Boys!

Kai is 5 weeks old!

Kai is now 5 weeks old already! I can't believe how fast time is flying. He now weighs 7 lbs 2 ozs (according to the clinic's scale). So it is good that he is gaining weight. Yesterday he had an audiologist appointment and he did not pass the hearing tests. He has to go back for another hearing test. This one tests the different pitches. We know that he can hear some sounds because he is startled by loud noises. The doctor said that some may have a hearing loss in certain pitches. So we will see how he does on that particular test. Otherwise Kai is doing good. He will have occupational therapy (through early intervention) every week. He will continue to have the home care nurse come to our house every week.

Gavin and Jace are doing good. They are growing like weeds. I can't believe how much Gavin knows for his age. We have started potty training Jace. He is very interested. It would be wonderful to get him out of diapers.

I start daycare back up tomorrow. Although it may be challenging at first, I'm ready for the routine for myself and for the boys. Levi just got put onto 12 hour shifts for like almost the next week. That's a bummer. He basically works and sleeps then.

Until next time!

Kai is now almost a month old! I can't believe how fast time goes. He is doing good. It is so great to have that feeding pump. I think it is better for Kai as well. We have increased his feedings a little and will increase again soon. He currently takes 55mls (30ml=1oz) per feeding. We had a home care nurse here on Monday and she is coming again on Friday. Tomorrow Kai has to see the surgeon that put the G-tube in for a check up, so we are heading to the cities tomorrow. On Monday Kai has to see an audiologist, he didn't pass has hearing screening so needs to get rechecked and then he has another regular follow up appointment at the clinic in Mankato.

Gavin and Jace are doing good as well. Gavin is pretty much potty trained now, just a pull up at night! Jace is starting to potty train. He has gone on the potty a few times. I can't believe how much they have grown just recently! Time sure flies.

Next week (Wednesday) I start daycare back up. My time off has gone be fast! As much as I would like to have more time off, I am eager to get back into routine. It is going to be a little challenging at first, but once everyone adjusts again, it will be fine.

Gavin and Jace playing out in the yard
Jace

Gavin

Great Grandpa Robert and Kai

Kai

Mommy and Kai

Kai had just a regular doctor's appointment on Thursday. He now weighs 6lbs 11ozs. We talked to his doctor about this electronic feeding pump. The clinic moved fast and we had someone out yesterday to set us up with this feeding pump. What a great device! This is going to make things easier for us and for Kai as well. He will get continuous feeding throughout the night (yeah...I don't have to be up all night). During the day we will still use the pump, but it won't be a continuous feed. We will still also continue to try bottle feeding him a few times a day. This feeding pump will make feeding a lot easier for when we are out and about. Before yesterday when we got it, I was trying to figure out how we were going to do feeding when are out and about. Before this feeding pump, we were pouring small amounts of formula into this 60 ml syringe that had to be above Kai so it could have gravity flow it into Kai's tummy. We were just so happy to get this feeding pump. The nice thing about it also, is that it is small and has a little backpack to carry it in. Technology...what great things that are made! It has been a bit overwhelming with everything. Kai has so many "peoples". It is sometimes hard to keep everything straight. I think I need to look into getting a PDA. Otherwise Kai is doing good. It is so fun to just hold and snuggle with him. Gavin and Jace really enjoy holding him as well.

Yesterday morning we got about 2 inches of snow. Gavin and Jace went out and played in the snow. They had a great time! Gavin was disappointed that the snow had melted away. We told him that there will be plenty more snow to come.

Yesterday morning the boys got a new baby cousin. My sister, Tina had a baby girl yesterday. And what a cutie! It will be nice when we all can get together.

Well Gavin and Jace sure like their little brother Kai. Gavin wants to be the big helper and Jace wants to hold him all the time. The first thing that Jace did when he got out of bed this morning was to look at Kai in his crib, it was very cute! It was kind of a rough night with Kai. I barely got any sleep. He does feedings every 3 hours and his feedings take about 1 hour to do (about 1/2 hour to feed and then another 1/2 hour to vent his tube). He was a little on the fussy side and I'm not totally sure why. He seems to be a little bothered during his feedings. They have him on a 24 cal formula feeding. Levi called tonight and talked to one of the nurses and she suggested to go down to the 22 cal formula feeding and see if that makes a difference. Kai has a doctor's appointment tomorrow so we can ask about it then also. I'm hoping that tonight will be a better night. We are suppose to keep doing his wrist splints and hand rolls. He does not like his wrist splints and always wiggles his hands out of them, so it is hard to keep them on him. We are also suppose to work on some positioning things with him and some range of motion things, but we haven't gotten to those yet. We are just trying to get situated and figure out his feedings and cares first. For those who don't know ( I can't remember if I wrote in a previous blog about this or not...I have brain overload right now), Kai is no longer in his harness. They took it off when he had surgery and the orthopedic doctor said to keep it off since there was no progress. It sounds like he will have to have surgery on his hips and then will be in a body cast for 12 weeks. They want to wait until Kai gets bigger, stronger and more stable before they go ahead with surgery. We had talked to the genetics doctor on Monday and she really thinks that Kai has Type II Cutis Laxa (cutis laxa is latin for loose skin). This falls under Connective Tissue Disorder and is extremely rare. I don't remember all the scientific things about how it is tested and how long it will take to determine if he has it. She said that because it is so rare, it is hard to find enough information on it. I know that some people had mention Ehler's Danlos syndrome and she said that Kai does not fit under this. So we are still left with the question...what does Kai have? Kai has about a dozen doctors and specialists that are working with him. He has many follow up appointments. He will be starting early intervention and the follow along program. We do know at this time that he will pretty much be delayed in everything. Otherwise Kai is doing pretty good. I have been trying to bottle feed him a few times a day. He seems to take anywhere from 5-10 mls from the bottle (he takes 52 mls total each feeding) and then the rest is tube fed. Tonight he went in the swing here for the first time. He liked it for the first 5 minutes and then started to fuss. He really enjoys to be held! Well until the next post!

Jace and Gavin with brother Kai

Kai's first day home

Kai is home!

We got to bring Kai home today! What an exciting day! So far Gavin and Jace have really been wanting to hold him. We are still getting situated. His feedings are different than a regular baby feeding. We are welcoming visitors, but please call ahead of time. We also ask that if you are sick to not visit right now. It is very easy for Kai to catch things and get sick easier.

Kai is doing well with his tube feeding. Every couple of feedings they up the amount to get him back to the amount that he was at before surgery. Last night was the first time that I participated in tube feeding him. Kai now weighs 6 lbs 4 ozs. It was so nice to sit and hold him last night. We didn't go up there on Saturday so it had been a little longer. When we were there last night, we had looked through his chart and found that the genetics doctor had stopped in on Friday. In the notes in his chart, it says that she believes that Kai has Type II Cutis Laxa. We have not actually talked to the doctor about this, nor have we been actually informed about this. We knew about the cutis laxa, it is latin for loose skin. So hopefully we will find out a little more about this when we talk to the doctor. I talked to his regular doctor yesterday and he said that it is possible for Kai to be discharge on Tuesday and if not that day then Wednesday. We are also waiting for the orthopedic doctor to see Kai. I am attaching a couple of pictures. The one is of Kai tube feeding. His arm is not in a cast, it is just bandage up to hold the IV in. The other picture is of the boys on their new bunkbeds. We moved Jace back into the same room with Gavin. Until the next post!