Going Strong! Day 82

Still on nasal canula and doing really well! Started trying to do bottle feeds and seems to like it, just needs to stay awake longer :)

On Kai's time

Gestational Age: 37weeks 1day
Birth Age: 11 weeks 3 days
Weight: 5 lb. 13 oz.
Length: 18.5"

They put Kai on canula today. They will allow him to stay on canula for good now unless he needs to go back on CPAP. Currently he is at high settings (.5 liter at 60%). Its been about 4 hours now and he's doing pretty good.

He also received a steroid for his lungs called budesonide that he inhales and is also still getting albuterol through the nebulizer.

He doesn't look as pale today and looks as if he's getting back to his "normal" self.

Still have some rough spots ahead please pray for his eyes,lungs, and brain.

Much love,
Ash

Recovery

So its been 3 days since Kai had his eye surgery and it seems like he's almost back on track.

He's on CPAP,but sprinting on canula has been put on hold while his lungs recovery from being intubated. He's still at 21% FiO2 (which is lowest setting to be on) but they went up on his PEEP today which is the pressure. He went from 5 to 6 so hopefully it helps him recover sooner so he can start back up on the canula again and start bottle feeds!

They also took an xray of his lungs today and it looks great and blood tests show no sign of infection. They'll take another blood sample though just to make sure he isn't getting sick in a few days.

He's still getting lots of eye drops and should probably have his eyes checked again next week.

I'm keeping my fingers crossed that the surgery worked for his eyes and that his lungs heal!

Free For All!

Book an appointment to hold Kai today! :)


He's loves to cuddle! 

(Notice his blue device...it's his personal MP3 Player. He loves music!)

Eye Surgery For ROP

SATURDAY, JULY 23, 2011 7:00 PM, PDT

11 weeks

Kai has been having a busy couple of weeks. He's been working hard on strengthening up his lungs by "sprinting" on the CPAP and nasal canula. As of now he's been doing 6 hours on CPAP and 3 hours on canula. The doctors started him on Xopenex (albuterol) medication to be inhaled to help dilate his lungs in hopes that it will help him get off the CPAP sooner.

He's been gaining weight steadily and is currently 5 lbs. 8oz. and getting 58mL's of milk through a feeding tube. Two days ago he took 5mL's of milk through a bottle and that was a huge step! He did a really good job!

Once again he impressed the developmental therapist with his great muscle tone, retention, and reflexes. He looks just great!

Eye exams have been done once a week and his ROP had gotten worse from Stage 1 to Stage 2. The doctor examined his eyes this Thursday and that's when he discovered his ROP had progressed to Stage 2/3 Zone 2. (Stage 3 for sure needs surgery and Stage 4 is going blind).

He decided that Kai would need surgery so he came back yesterday (Friday) morning to examine once more to confirm that he needed surgery. His eyes were in definite need of laser surgery. So yesterday he was prepped all day to eventually get the surgery around 5pm last night. The surgery took just over an hour and he needed to be sedated which also required him to be intubated again with a breathing tube and to have no food the entire day. 

The doctor said the surgery went well and he's very lucky it was caught when it was. Only one treatment of laser surgery should do the trick. 

When he was back in the NICU he was still heavily sedated so he needed time to wake up before they could extubate him. It's better to get the tube out as soon as possible so that it does not scar or inflame his trachea. 

He had a good night last night and at 2pm today he had the tube taken out and is back on CPAP and sating 97 (that's really good!). He should soon get back to his regular "sprinting" routine of on and off CPAP/canula probably by tomorrow as well as continue feedings again. 

Kai has really pulled through and I know he will continue to. He still has a few more areas to work on and get over, but he's been doing really well overall and more importantly he seems like a very happy boy!

Are You My Mother?

MONDAY, JULY 11, 2011 9:52 PM, PDT

9 Weeks

Thanks everyone for being patient for this next update! 

Time is flying. 

Kai received an awesome baby shower yesterday. It turned out to be so beautiful out!--Thanks to everyone who could make it and of course thank you for the gifts! They will be alot of help.

Since Kai's last update, not too much has changed except that he did not last long on just the nasal canula (goes into his nostrils and only receives oxygen). So he was put back on the CPAP machine to keep his lungs expanded with pressure. He has been back on CPAP for a week now and he is having less dsats which is good progress for him.

He had another blood transfusion last week as well in hopes that it would lower his dsat episodes, which it has helped in my opinion. He did well with that and the IV line is already out to help reduce risk of infection. He doesn't seem to mind the IV lines, but his forearm his taped to a small piece of foam and I don't think he enjoys whacking his face with it when he tries to put his hand near his face. 

His eye exams have been about the same. Stage one ROP in "zone 2". One of the doctors went over what all that means to me one day and all I can say from that now is that this stage and zone is pretty typical for his gestational age, so he's sort of on the right track. His blood vessels in his eyes just still need to grow and mature at a steady pace.

No recent brain ultrasounds. He will just have an MRI to see a more detailed image of his brain tissue. That will happen when he is 36 weeks gestation (he's 35 weeks tomorrow, so sometime next week or the week after).

Kidneys have been quiet.

He is still showing signs of acid reflux and to me it looks like it really hurts him. Every time he receives food he has a few episodes of reflux and he cries, turns red, and looks as if he is holding his breath like he's trying to stop it. He hasn't been "officially" tested for it by swabbing the inside of is esophagus, but they have still been giving him medication to help with it because it's pretty obvious he's in pain. He can however grow out of acid reflux at anytime!

He's still gaining weight! He's at a whopping 4 pounds 14 ounces as of tonight! Well over two kilos. 

Although its awesome that he is gaining weight, they still want him to grow proportionately so here and there they can add or reduce his caloric intake! (they still haven't measured him)

I am still holding him as often as I can and we have been trying to get a hold in twice a day rather than just once. It's soooo amazing to hold him! I absolutely love it. He loves it too I can tell. He was very awake this afternoon while I was holding him and he kept looking up at me. The expression on his face is priceless yet it reminds me of the little bird in the Dr. Suess book, Are You My Mother? Every time he opens his eyes he probably has to get a good look and listen at each nurse to check if its me or not. That's just what goes through my head :)

I actually read that book to Kirra today, weird coincidence. 

Anyways, that is the update for now! 

Thanks everyone for checking in and dropping notes-I'm reading them :)

Love-Ash