Wednesday, June 29, 2011

Showing Signs of Reflux

WEDNESDAY, JUNE 29, 2011 2:10 PM, PDT
7 weeks
Once again prayers and thoughts are coming through for Kai! He's having a better week. He's been gaining weight, 3 pounds 11 ounces, breathing better, and showing overall good signs of health!

Since he's been on the CPAP machine he has been doing really well. It was a rocky start because he was using a mask version of the CPAP and not only was it very uncomfortable looking on him, it wasn't always giving him a stable amount of oxygen so one of his nurses suggested to switch to the mask with the prongs going into is nostrils. The switch made a huge difference! His dsats have been less and he seems more relaxed and comfortable. 

Because he has been improving with this type of mask, they lowered his "PEEP" (amount of pressure forced through the CPAP) so he receives less help keeping his lungs open. 

Now that he's doing better on a lower PEEP and his oxygen rate is at "room air" 21%, they want to remove the CPAP completely tomorrow and see how he does! Super good news! If anything, he may need a little help using a nasal canula or nothing at all. 

If he continues to do well breathing on is own he can start "recreational nursing" to help him figure out how to breast feed. He needs to be able to "suck, swallow, breath" to move on. He'll also try feeding through a bottle as well and currently he is at 35mL of breast milk every 3 hours. He's been showing signs of reflux so he started some medication to help with it and this may or may not affect feeding from a bottle or nursing.

As long as he continues to gain weight and he is able to regulate his own temperature (which he is) he'll be out of his isolette bed and into a regular style bed (not a crib). 

He also gets his next head ultrasound tomorrow to check the bleed and his head circumference has been very stable so hopefully everything looks the same or has gotten better. He will also be getting an MRI in about 3 weeks. 

He's been getting weekly eye exams as well and as of now he has stage one ROP which is nothing to worry about at this time and is very common. 

Thank you everyone for your support and thoughts!

Tuesday, June 21, 2011

No More Ventilator!

TUESDAY, JUNE 21, 2011 8:49 AM, PDT
6 weeks
Yesterday Kai was switched to the CPAP machine to help him breath. He did great with the transition and has been tolerating it since yesterday morning.

He has had less dsats with it so far but has a new alarm for is heart rate. If his heart rate drops below 100 an alarm goes off and its called a Brady short for Bradycardia. When this happens they can either let him recover on his own (which he has been already), stimulate him with touch, or give him breaths through the CPAP. 

He's about 3lbs 7oz, weight goes up and down a little. He was started on Prolacta again which is powder breast milk mixed in with his regular milk feedings to help him with gaining weight. 
He also received a steroid for his lungs through IV before and during the CPAP transition, but he doesn't need anymore.

Kidneys, heart, lungs, brain all seem to be function well at the moment. His stomach has larger gurth size here and there, but they haven't noticed anything significantly wrong with that yet.

The developmental therapist will be assesing him this week and every week from here on out. She'll check his muscle tone and his ability to be stimulated for longer amounts of time this week. He may also be getting his first eye exam to check for ROP (Retinopathy of Prematurity) which is an abnormal growth of blood vessels.

All in all I think he is doing great! He has great doctors one of which is another favorite that is back on this week and he is very much cared for in the NICU. Once again his prayers are being heard and he is thriving! I hope I get to hear him cry today now that the ventilator tube is out of his vocal cords! 

Tuesday, June 14, 2011


TUESDAY, JUNE 14, 2011 12:08 AM, PDT
Quick Update
5 weeks oldNot too much has changed these past few days, but I thought I would just let everyone know that. He has gained some weight though, 3lbs. 3oz and getting 30ml of milk now. Hard to believe hes started with 3ml's just a few weeks ago. They added a fortifier in the milk once again to give him more calories, but it is not the Prolactin fortifier because that made his phosphorus levels too high.

His electrolyte levels are better now than they were before and they will continue to monitor them to make sure his kidneys and functioning properly. 

His ventilator settings are still doing well for him and he's on low oxygen needed so if he is stable this week they will try the cpap again next week.

His head circumference is 26.75cm, growing, but at a normal rate, so that is good. And his next brain ultrasound is on Wednesday.

That's about it for now. Just trying to keep up with skin-to-skin as well, he's starting to last longer during these times of bonding and its really awesome. I wish I could hold him all day!

Thursday, June 9, 2011

Good Day

I met with the doctor who's on duty for the next two weeks this afternoon. We basically went over Kai's general condition and status.
He said there were three major concerns for Kai as of right now, that is his lungs, kidneys, and brain.

His lungs are still maturing and with the change of ventilator settings he has been fairly stable. The Chronic Lung Disease isn't so "Chronic" meaning, in his own words, he will be able to play sports when he's older. So that's great!

His kidney's had some problems and he couldn't tell me why, but he says things have gotten better and all he can do now is monitor and adjust his electrolytes accordingly to help his kidneys function on a daily basis. 

And lastly the bleeding in his brain that was originally diagnosed as a grade 4 IVH bleed has been degraded to 3 on both sides of the brain and he told me it has gotten better and the blood has absorbed. This is awesome news and I think he was shocked I didn't already know this, but I haven't sat down with a doctor in over a week so I am so glad I did today! 

On top of all that he just looks great too. He's had two blood transfusions in the past 48 hours but every time I visit I noticed how well he's doing and how well he's progressing!

Thank you again for thoughts, support, prayers, and love! He's feelin it and things are looking up!

Wednesday, June 8, 2011

1 Month!

WEDNESDAY, JUNE 8, 2011 8:27 AM, PDT
Happy 1 month Birthday Kai!

"There are two ways to live your life. One is as though nothing is a miracle. The other is as if everything is."
-Albert Einstein
(himself a preemie)

Kai's 1st month at

Saturday, June 4, 2011

Full Feeds

Day 27
June 4, 2011

At "full feeds" now... 21ml's with additive Prolactin that gives the breastmilk more calories so he can really beef up! They also started him on Potassium today to help his electrolyte numbers since they're on the low side and that is mixed with the milk as well. Hopefully sometime tonight they will decide if they want to take out his PIC IV line in his foot. They use that line for his nutrient fluids and now that he is receiving more milk he doesn't necessarily need that line anymore. 
They will try to give him his Lasix, that is used to help dry out his lungs through his feeding tube as well, but it does not work as well given orally so if they need to give him a new PIC line in a couple of days because of that they will.

He's just under 3lbs! Weighing in at 2lbs. 14oz.'s. 

The xray of his lungs the other morning showed some damage of a little collapsing and still a little "wet". They always try to rule out infection in his lungs by getting blood work. So to help his lungs, they changed the ventilator setting around and he seems to be doing well with the changes and recovering from the "d-sats" on his own (which is good). No infection as of now either. 

Kidneys are o-k, but specialist have been keeping a close eye on him to make sure they are functioning properly. Urine output is pretty good too, he actually sprayed all over his bed and isolette this morning and needed all new bedding! 

Head ultrasounds coming back with no significant changes and they have been pushed out to every two weeks. 

Held him on Wednesday for only 25 minutes because he was just not into it and it showed on the monitors and I could just tell too. I did however hold him on Thursday for much longer, over an hour! It was way different that the day before and he couldn't have been any better! It must have been because Poppy was there again! 

Overall he's hangin in there and staying really strong given all of his circumstances. The doctor's at this point are trying to balance his fluids since that seems to be affecting most organs right now.