Almost Back to Himself Pt. 2

Kai has definitely turned a corner this morning. He woke up as he use to, lying in bed babbling quietly rather than coughing profusely. He drank his entire bottle of formula (of 6 ounces) and sounded much more clear through the stethoscope. So we will continue with the Pulmicort, morning and night and keep the Albuterol to twice a day or as needed (if its hard for him to breath-retractions). And continue out his Amoxicillin.

He has been awake more and playing more as well has finished his other bottles today and even had about a tablespoon of Pears! And he was actually interested in eating today, which I have offered him solids since he's been suck, but refusing them completely. So I think its safe to say he's getting back on the right track.

I'm SO happy and SO proud of him!

(And he can officially sit unassisted!)

If anyone wants to join me in a walk to raise awareness for babies born premature, you can sign up here and 
see who else is walking! Also, I'll need a head count for the t-shirts, they may take a few weeks...

Join The Walk

Sleeping it off

Kai had a follow up last night with a different doctor since his is an attending doctor as the hospital this week. This other doctor decided to start Kai on Amoxicillin for ten days along with the two breathing treatments and will check on him again tomorrow.

He's gotten a little better since Sunday. He is keeping his food down, but is not interested in solids so he's just getting a bottle, which is fine because he had lost 5 ounces on Monday and gained 2 back yesterday so formula is better than nothing! He's coughing a little less and sleeping better during naps and bedtime.

Bronchiolitis

Kai hasn't had the greatest weekend and was diagnosed with Bronchiolitis this morning. I guess this along with Croup has been widespread around here lately and the Pediatricians have seen a lot of sick kids this winter.
All we can do is keep up with breathing treatments Pulmicort and added the Albuterol every four hours and a little TLC. I'll keep his blog posted on his status...

*What is the difference between Bronchitis and Bronchiolitis?


Bronchitis is an inflammation of the bronchi. Can effect adults and children. Caused by viruses (influenza) mostly, but can be super imposed by bacterial infection also. 


Bronchiolitis is an inflammation of the bronchioles. It effects mainly children and caused by RSV (50% of the times) or other viruses. Most commonly during winter and spring months. 


Bronchi branch in the lungs and give rise to bronchioles.

Development Clinic

We took Kai to his development assessment this morning and it went really well. He was weighed, measured, given a few tests, and a physical examination.

He's currently 17 pounds and 26 1/2inches long. (I don't remember head circumference). He's in 50th percentile for weight and 75th percentile for height and 50th percentile for head growth all at his 6 month adjusted age.

The tests they conducted included: visual test by tracking a hanging object, hearing test using a bell which the doctor rang behind him on each side, and a few hands on grasping tests. He passed visual and hearing. He was given objects such as square wooden blocks to grab off a table, which he did. He made him reach and grab a plastic ring that he used to dangle and watch if he would transfer it from hand to hand, which he did. He grabbed small pegs but could not grab a small Cheerio. I'm sure I'm leaving a few things out, but it only took about an hour and a half.

Overall Kai is acting like a 7-8 month old baby and has no need for any referrals for anything at this time! They want us to work on the small object thing like a Cheerio to hone his fine motor skills and they'll make sure to follow up on his hand tremors they suggested he had as he reaches out for objects. It may be nothing, but they noted it as something to asses at the next appointment that will be in August!

We were really happy they were impressed with him because we know how well he has been doing.

Winter Day

Kai has been having a great day. He's been enjoying his beauty sleep and has been sleeping in to about 7:00am now. Sorta throws off his mini schedule, but we work around it!

Today was my first day back at school finishing up my prerequisites for our community college's Dental Hygiene program. I'm very close to completing my prerequisites as well as my A.S.
I'll only be out of the house 2 mornings a week while my best friend and soon-to-be in laws watch the kids. I think it will be healthy to have time apart from the kids only for this short time, so I'm ok with it and I think they are too, since they have fun people to play with while I'm away!

Anyways, I've been making Kai's baby food and today we're making butternut squash for this nice cold winter day! Overall Kai has been doing ok with eating solids, not great. I think he'll get there and it may take time. I just hope he doesn't develop a complete aversion. He sure does like his bananas in the mesh holder though!

He has also be siting on his own for longer periods of time now! I'm really happy for him that he keeps getting stronger and stronger!

Tomorrow is his first big development assessment appointment. I guess these start at his adjusted 6 months. (Or maybe it's for his chronological age of 9 months, not sure). I think it will be full of diagnoses and prognosis (Sp plural ?)
I'll update the blog for sure after that visit!!

Back to himself

Sorry it has taken me a while to update on Kai, I guess we left off in the hospital. Well Kai came home a few hours after being watched in Pediatric ward. The day after we saw his pediatrician and he wants Kai to continue breathing treatments of Pulmicort twice a day. Since then he's gotten a lot better. He still has a lingering cough and runny nose, but they said those may last another week or two and the runny nose could even just be from teething.

Kirra ended up getting sick as well, but she's handling it well. I think she sort of likes the attention she gets from being sick because she's never sick and she's been sleeping with me while Adam is out of town :)

Other than that Kai is still doing really well. He has a cranial sacral therapy session today and Synagis shot on Friday. He's still feeding really well and we've lengthened the intervals to 6-7oz of formula every 4 hours with cereal in afternoon. I also got him Sassy Teething Feeder (same brand I used for Kirra when she was Kai's age) and gave him a banana and he loved it! I'm really excited to start giving him easy fruit like this, he did a really good drop chowing it down.

"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.

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.

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!!!

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!

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! 

XOXO

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!

First Food

Today we tried giving Kai his first bite of rice cereal! He has been showing some of the signs such as:

• Can hold head up
• Sits well in Bumbo chair
• Makes chewing motions
• Shows significant weight gain (birth weight has doubled)
• Shows interest in food
• Can close mouth around a spoon
• Can move tongue back and forth, but is losing tendency to push food out with tongue
• Is teething

I only tried a small amount and will try this once per day for now...

1 tsp. of this 

4 tsp. of this (already mixed with water)

Mix

Spoons up!

And open up...

And he's spent...it was a success

Hope everyone enjoyed their Christmas weekend! We sure did...

P.S. I've been updated the Photos tab as well as the What Kirra Is Up To tab--check them out! :)

Merry Christmas!

From our family to yours, we hope you have a wonderful Christmas and a great New Year! 

Sammi The Seal

Kai started his respiratory treatments today. He didn't seem to mind getting his medication through his cute nebulizer...

Sammi the Seal

Ready for Round 1

And this is Tucker the Turtle

We also let Kai have one of his Christmas presents early since he's been such a WONDERFUL boy!

Bumbo

He really enjoyed his new blue seat. He likes playtime so I think this is a great addition and perfect timing to start using. 

Kai is still going to OT every other week and PT (Cranial Sacral) opposite week of OT. Yesterday his OT was once again impressed with his progress. Not that he has been doing a whole lot more, but the fact that he's just simple "able" to do/try the exercises without complication. So what we will be working on now is crossing his midline with opposing hands reaching for toys. He's always been able to put a toy straight to his mouth once in hand, so now he needs to reach for it in a sitting motion. He somehow manages to get a toy in front of him while doing tummy time. We are still practicing rolling, but he hasn't done it on his own yet. We stretch him much less than before now, but still enough here and there to get him out of his comfort zone (especially out of his minor left should torticollis) Still doing massages on his arms and legs after baths. Still doing mini pull ups (which he is a pro at). I'm not really sure what else he does that he "needs" to be doing for a 4 month old because his doctor believes as long as he reaches milestone eventually he is fine. So he hasn't been testing to see if he's been acting age appropriate really at all (for his adjusted age; 4 months).

I also forgot to mention that he did receive his flu vaccination with his 6 month round last month so this Friday he's due back for his booster and a quick chat with his Pediatrician about this wheeze.

Cold Air

Yesterday Kai met with a Pulmonologist at Stanford. He was referred by his pediatrician because Adam and I had noticed a little wheeze when he breaths. The doctor determined he does have a slight wheeze when he exhales which is most likely due to this cold air. Although he is not sick the doctor still wants to treat him with two different medications which he had while he was in the NICU. He prescribed him Pulmicort and Albuterol to inhale through a nebulizer. He wants Kai to start with Pulmicort 2 times a day for the next two months until the doctor sees him again.


He said because Kai was born with RDS (Respiratory Distress Syndrome) and also experienced extremely low amounts of amniotic fluid while in utereo, he will be at risk for Pulmonary Hypoplasia.Pulmonary Hypoplasia (P-Hyp) is the failure for lungs to develop in-utero. This often afflicts only one lung. Basically, the lungs do not have sufficient tissue and blood flow to adequately perform the oxygen/carbon dioxide exchange that the body requires to function. While in utero, Kai experienced prolonged oligohydramnios, where there has been long-term deficiency of amniotic fluid, the lack of development of kidneys, and premature rupture of the membranes. (The doctor also asked about his kidneys because that was a concern as well. A few days after Kai was discharged from the hospital we went back for a kidney ultrasound and never heard results from it. Well the doctor yesterday looked up the results since all of Kai's info is in Stanford's database and it said he had an "unremarkable" ultrasound with no areas of concern! Wow that's awesome! No wonder we never got a phone call.) 


Anyways, a definitive diagnosis of Pulmonary Hypoplasia can only be made through an autopsy, so diagnosis is really a strong suspicion and based on clinical presentation along with historical factors. Either way he still has Chronic Lung Disease which I was told is not so "chronic" but more acute meaning short lasting through his "baby years". It's sort of hard to explain. There are many malformations that can happen with lungs when born so premature simply because they were nowhere near fully developed. In closing the doctor basically told me to be aware of any other symptoms noticed that are respiratory related. Kai's lungs are the most important factor in his health as of right now. 


Additionally everything else is checking out great for Kai! This doctor whom we've never met before was just as impressed with his progress as all the other doctors have been since he's been home. His current weight is 14 lbs 10oz and 25 in at 7 months old. He falls into the 50th percentile for height and weight for a baby at his corrected age (almost 4 months) but of course below 5th percentile for his actual age.