Thursday, January 26, 2012

"Never Trust A Preemie"

So we had a late night last night at Dominicans ER. Kai had woken up in the morning with a nasty cough and runny nose that didnt seem too bad at first, but still took precautionary measures and spoke with his Pediatrician. I explained that he had runny nose (no green snot), hoarse cough, no fever, and seemed to be eating fine. He told me I could bring him in if I wanted to have him seen, but I decided to stay home with him and see if it wouldn't get any worse. So i was then instructed to keep suctioning his nose, use the humidifier, and use saline drops. His doctor thought it may have been common cold, but if breathing got worse I had to bring him in. So i did all of that except i did not have a filter for the humidifier so I used the shower and closed the door. And gave him a nice warm bath after.

He was about the same all day, sleepy, runny nose, and cough until bedtime. He started coughing a lot more and had a hard time catching his breath. So I decided to just take him in the ER (10pm) even if it was just a common cold.

After about 2 hours, we saw a doctor and immediately said he has Croup Cough. I was a little surprised, but sort of glad he pin-pointed his symptoms.
Kai received breathing treatment of something with epinephrine and a steroid shot (I forget the name. This was at 1am) then another breathing treatment of Albuterol then a nasal swab to test for RSV, then another dose of epinephrine since he want showing signs of getting better. At about 4am they took an X-ray of his chest in this horrible looking contraption that I had to assist restrain him in. Looked like this

The RSV test came back negative and X-ray looked good. He started to sound a little better, but his O2 saturation were fluctuating a bit so they wanted to keep an eye on him so he was admitted to Pediatrics.

6am now and he's had some milk, clean diaper, and fresh clothes. Now the doctor wants a blood test, CBT to rule out infections.

It's 8am now and we're still here just hanging out resting until he's stable enough to be at home.

A nurse in the NICU once told me "never trust a preemie". Well technically Kai is an Ex Preemie, but he still has these days where he's completely fine then out of nowhere is instantly sick. "They play tricks" she said, it was Grace, the Respiratory Therapist. But this is most definitely not his fault.

I was sitting in that awful ER questioning myself, how did this happen? We were doing our RSV isolation with exception of doctors appointments, walks outside and occasionally going to other family members houses so, what went wrong?! It's frustrating because he fought so hard for those 105 days that I don't want him to be sick anymore. I know this is not the most awful sort of sickness he could have, but he's still sick, and for Ex Preemies that is dangerous. I just hate seeing him like this, looks like it hurts.

Anyways we'll be here. And he's still a happy little boy too. I'll keep you guys posted.

Saturday, January 21, 2012

No more OT

Kai had an appointment with his OT yesterday and she was impressed with his rolling ability, grasping, transferring toy between hands, head control, and overall strength that she decided Kai no longer needs her services! So awesome to know that he is fine without the help of an occupational therapist. She said if he was having difficulties with his solid feedings next month, we can see her for help on that, but she has faith he won't need to see her again. Very bittersweet.

His current weight is still 16lbs. 7oz. I'm positive his lack of gaining weight this last month or so is due to all this extra cardio he's getting in with rolling around and tummy time.

His GI doctor had us experiment this week by having Kai go cold turkey off his Prilosec medication to see if he has acid reflux symptoms still and after just 3 days off, the reflux clearly is still present. And this is fine, babies (preemie or not) can have acid reflux up to one year or more. So I started him back on his Prilosec so he's not so uncomfortable. We will see his GI doctor on Monday.

Other than that not much else is new here!

But I thought I'd share these cute father & son photos.

Sunday, January 15, 2012

I'm So Proud of You KAI!

Here we are again practicing rolling over to opposite side, left to right. Kai has been favoring trying to roll from right to left so we've been working on going the other way today. Here are a few clips we have from today's hard work...

Trying so hard 

Kirra's help...but really she thought he was going to hurt himself so she tried to catch him

Kirra and I traded roles

And Finally we have a winner!
(It may look as if I helped him, but I was moving a toy)

He has been doing awesome these past couple of days so I'm trying really hard to encourage him. I also removed that blanket he had aiding in his leverage last night. I'm so proud of my sweet boy!!!

Saturday, January 14, 2012

Practice, practice, practice

Here is Kai's most current roll. I put a blue blanket under the upper part of his body to assist his roll, but it's very minimal cushioning, but I'm sure he can't do this quite yet without a tiny bit of help...

He'll just keep practicing!

Tuesday, January 10, 2012

We're Still Here

I apologize for another week going by without any updates. I am so happy many of you are still following Kai 8 months later. Yep, he's 8 months now!! It's very crazy to think its been that long and its also crazy to think that just two months from now a year ago I started bed rest with this sweet child.

Anyways, Kai has been truckin along with everything. He is officially out of his sleep-all-day-baby phase and takes two solid naps during the day and still sleeps through the night. So since he's always awake now he has been getting in a lot more tummy time as well as more practice time for rolling, sitting, and just playing. He's really strengthening his trunk muscles with all this "working out" because I can hardly leave him in his bouncy seat for more than a few a minutes because he starts to sit up in it!

He has been so chatty as well. He loves to look at faces and talk while gazing into their eyes. His favorite by far is Kirra. Its so sweet. 

He also prefers to be moving around. I always expected him to not be "normal" and to just be immobile, which is a terrible thing to think, but when trapped in a NICU for so long its hard to see the future and think nothing will be wrong. Kai has completely amazed me and our family.
He's nowhere near 'vegetable' as once described could happen to him simply from being so sick for so long. He loves to sit on my leg and bounce up and down with his legs and pretty much can't sit still. I love it! 

He still can't roll over, but I think he's almost there! I so believe in him and I can tell he'll be rollin in no time. 

The OT (Occupational Therapist) that he has been seeing every other week has decided to see him once more for the last time (as of now). It's pretty exciting because she thinks he is doing so well that her services are almost pointless. Next month however, when he turns 6 months adjusted, he will be assessed at the High Risk Infancy Clinic here in Santa Cruz to see how his progress is and what his problem areas might be. From there his pediatrician will refer either back to OT or PT and so on. He still sees a PT, but mainly for the Cranial Sacral treatments and we pay for those not his insurance. So if he sees an additional PT through a referral we won't have to pay for that, but we'll keep the Cranial Sacral sessions going separate. 

His reflux is still under control as well. He takes 4mL of Prilosec still and is a "happy" spit up baby. Meaning it doesn't hurt since his stomach acid is neutralized. However, the GI wants to see him in a few weeks and see how he does off the Prilosec for one week prior to his appointment to determine any lingering symptoms. It will be interesting to see since he will be starting solid foods around that time and since the food is heavier than milk, the stomach would have a harder time allowing the food to come back up. He is still taking Miralax as well (stool softener) and GI thinks he'll be using it for a long time. 

As far as health goes, he's been great! No concerns as of now. We stopped the Pulmicort because his symptoms are no longer present and its completely ok with his pediatrician. Pulmicort is a steroid and like everything else has adverse side effects so its better to use in moderation and when needed in babies so young. Plus, I'm pretty sure those initial symptoms he was having with the wheezing may have also been caused from aspirating stomach acid because he was on too low of a dose for his weight at that time. Reflux can also affect the respiratory system so it may not have been the 'cold air'. We won't really know, but we know now he's clear! 

He's updated on all his shots including the Flu shot and only has two more Synagis shots left! But since he's over 16 pounds his last two will actually be double shots :( poor big boy. 

Thanks for stopping by and I hope I filled everyone in well enough! 

Tuesday, January 3, 2012

It's been one week since we started giving Kai rice cereal and he is still doing great! We will not be giving him anymore cereal than he is getting now. He will continue to only have it between his 12:00 and 3:00 bottle. I've also mixed his probiotic powder in the cereal as well since it's not suppose to go in his bottle feeds. So all he is getting in total is about 1 tablespoon of cereal/probiotic/formula mix once per day. We don't want to go crazy and start giving him pureed food just yet. He's almost 5 months adjusted so we will probably start pureed food in early February and see how he tolerates it.

Other than that Kai is still amazing!