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. 

Walk With Us!

Dear Friends & Family,


Our family is walking in March for Babies on Saturday April 28, 2012 at 9:00am in San Jose (exact location TBA). We’re proud to be helping the March of Dimes by walking together for stronger, healthier babies.

Team Kilo Kai is walking in celebration of Kai, who was born at 26 weeks nearly 3 1/2 months early. The March of Dimes works to understand and prevent the problems that threaten our babies and supports local programs that help women have full-term pregnancies and healthy babies. 75% of their donations are used to actually support these programs (75% is a large percentage for a fundraising organization!)

We want to help, and I’m asking you to help, too. Together we can do so much more. When you sponsor me in March for Babies, you make a difference in the lives of babies and their families — right here in Santa Cruz and across the country.

I want to invite you to walk with me on March for Babies day. You can join the team on our fundraising page http://www.marchforbabies.org/team/t1759984 Just click on JOIN THIS TEAM button and it will walk you through each step! I also created a tab under this blog titled >Join the WALK< Each walker will specify a desired amount of money to raise on their own. Check out what goals I have set for TEAM KILO KAI! I will also provide each walker with a team t-shirt in remembrance of this day of giving back.


**You do not need to make a donation to sign up and walk**


If you want to learn more about March for Babies and the March of Dimes, there’s great information on marchforbabies.org and marchofdimes.com.

I'm very excited to be a part of March for Babies this year and hope you will join my team!

Thank you for helping me give all babies a healthy start!

Please walk with us! :)

Let the laughing begin

A blurb from Kai...

Growing Perspective

I've wanted to do this for a long time and thought now seems good for some reason. I wanted to give a "growing perspective" on how much Kai has grown (physically)

This is me holding Kai at 5 weeks old (or 31 weeks gestation) and this is him today. Much larger head at 3 1/2 months adjusted age.

His first outfit here at 4 weeks. I bought this from an online preemie clothes store. Could be a slim fit tee today!

Currently Kai weighs 14 pounds exactly at 6 months 3 weeks ( 3 1/2 months adjusted). He is doing SO well still. He had an Occupational Therapy session today (which we're doing every other week--different from his Cranial Sacral sessions with a PT). His OT was very impressed with him today. She sees a lot more strength and a lot less tightness. I had noticed this flying type of move he does when he does tummy time and  she observed it as well and told me its a milestone! The Superman! He extends arms and legs in an upward motion as if he looks like he's flying then pushes himself back up onto elbows. Overall he is tracking very well for his adjusted age. 

He still has slight Torticolis on his left side between his shoulder and neck. The PT & OT have both been working on him with this and today the OT suggested its more of a weakness of his sternocleidomastoid muscle in his neck more than it is a tightness because he is not stuck in this position. He freely moves his neck and rotates his head perfectly. So to adjust this slight Torticolis I will keep stretching and "correcting" his head each time I notice it. 

He is also still going strong sleeping in his crib and not waking up at night. He will sleep from about 9:30pm to about 6:00am! He is so content and independent! 

Tucked Into His Own Bed

Kai slept in his own room last night (all night) for the first time! Adam and I decided to take the same parenting approach to Kai as we did Kirra, since we are happy with how we've raised her so far. He did great last night and slept fine as he did in our room as well. I of course had a monitor on in our room all night just in case I couldn't hear him since he's down stairs and I keep the kids' doors shut so the dogs will not chew their belongings. So we'll go for it again tonight and so on. I truly think its harder on the parent to make this transition than it is for the child. I stayed up late last night doing chores to help the late hours go by so i could check on him before I was completely asleep.

In the NICU I met with a therapist twice a week for a study I signed up for and we discussed parenting your preemie and how to deal with underlying emotions with various issues such as making a transition such as the one we have just made. I remember the therapist asking me a lot of questions about how I would treat Kai since he was an ex preemie and she would have me play out my reactions to certain scenarios. I remember thinking and telling her that I would not have a problem with how I parent him because I would simply treat him and raise him as we did Kirra. I remember being so sure and so confident in my answers to her that I never saw this aspect as a problem. Now that I am here and having to face this what should be easy transition, I am finding myself feeling sad that he's not laying right next to us and he's out of my sight. I feel guilty in some respects too. I feel like its not fair to him to be left alone because he was left alone (meaning without his family) all those nights in the NICU. So what I am doing now with these feelings is looking back at those therapy sessions and what the therapist said to me and realizing that I can't change the past and that I want to do the right thing and give Kai exactly what we gave Kirra. Kai is an extremely strong boy and I know he can handle anything that comes his way, hopefully I can gain some of that strength and from him to ultimately help him as well as Kirra.

Simply Thankful

Happy Thanksgiving!

We will be having our very first Thanksgiving as a new family at our house. Usually we go to our parents house and hang out all day, but for the sake of Kai's health it will be just us having turkey pot pies!

To say that I am thankful for Kai's health is an understatement. From day one he has given me so much to be thankful for. I always wanted a little boy and I am extremely thankful he chose us as his family. Although he came into our lives with an unexpected arrival there is not one thing I would change about his journey so far. Its all the little things, all the ups and downs, all the support, all the strength and courage, all the milestones that makes me realize how lucky and thankful I am that Kai is who he is. I know he is the strongest little man I have ever known and I pray he never changes because he is perfect.

I cannot imagine life without Kai or Kirra--they are both miracles in my life.

Thank you Kai and thank you Kirra for making me grow up a little faster, get a little stronger, and taking me on a journey with you in your lives for us to share.

Thank you Adam for your unconditional love and continuous support. I couldn't be the mom I am today without my best friend by my side. 

Happy Thanksgiving! I love you my little family! 

Flashback Friday

Look at all that hair! This is Kai at 5 weeks old in the NICU holding on tight to my pinky.

Happy Days

Kai had another heart echo and EKG today at the Cardiologist. His PDA has gotten smaller! That's really good news! The 'hole' is less than 1mm in diameter and everything else in his heart looks good. The doctor said hopefully it will keep getting smaller so surgery isn't needed! His health has been impeccable and I cross my fingers that it stays this way. I never realized how precious and valuable being in good health is. I think everyone should be thankful when blessed with good health and should never take it for granted. Sometimes I feel like I took Kirra's health for granted since she has always been healthy (and its paid off) because now that I see Kai overcoming health issues I am so grateful that he doesn't have it worse. I cannot fully express how happy and thankful I am that Kai and Kirra are doing SO well. Things can always be worse and I'm just so glad they're not!

Also in case anyone is wondering Kai is 13 pounds now and 24 inches! Here are a few pictures of him and his big sister Kirra...

Half Way

Happy 6 Months Kai!

I cannot believe six months ago today Kai was born. It brings back a lot of emotion to think about that night that changed our lives. He is so special to us and we are so grateful he chose us as his family. We love you Kai, you are our miracle boy!

RSV season

November is here and so is RSV season. Kai will be getting his first of five shots tomorrow to prevent this disease. There are a few reasons why he needs this series of shots. First and for most he was born premature, he had low birth weight, chronic lung disease, history of respiratory distress syndrome, and of course lives with a school aged child a.k.a Kirra :)
So needless to say he more than qualifies for these shots as well as all of the precautions that go along with preventing the disease.

Here is an article from About.com that gives a summary of RSV and Preemies...


RSV can be a serious illness in preemies.


Image courtesy of CDC/Dr. Craig Lyerla
Understanding and preventing RSV in premature babies is as important part of bringing a preemie home. NICU1 discharge is a joyous occasion--no longer do parents have to follow the routines of the hospital's special care nursery or neonatal intensive care unit (NICU) or be separated from their baby. Most importantly, going home means that baby has made it through all of the immediate health problems caused by being born early.
Once parents bring baby home, keeping him healthy becomes the major goal. During the fall and winter months, preventing respiratory syncytial virus (RSV) is a preemie parent’s biggest challenge.


What is RSV?


RSV2 is a common virus in the fall and winter months. In fact, it is the most common cause of upper respiratory infections in infants and children. The majority of children have their first RSV infection by age two. Most children who have RSV recover on their own. But 125,000 children per year are hospitalized with RSV infection, and 1% to 2% of those children die.
In preemies, RSV is a major health concern. It is the number-one cause of sickness and re-hospitalization for preemies, and prematurity is the greatest risk factor for severe RSV infection.


Symptoms


In most children, RSV looks like the common cold. Infants and children with RSV may have a stuffy nose, cough, fever, and malaise.
Symptoms of severe RSV infection requiring immediate medical attention include:


Rapid breathing
Difficulty breathing
Cyanosis (bluish discoloration of the skin)
Apnea (periods of non-breathing)
If your baby shows any signs of these symptoms, you should seek immediate medical attention.


Preventing RSV


Hand washing is the best way to prevent RSV infection from spreading. The virus can live on hands and clothing for up to 30 minutes. It is spread through the air when people with the virus cough or sneeze, or through contact with items that have the virus on them.
In addition to hand washing, eliminating risk factors helps to prevent RSV infection. Risk factors other than prematurity include:


Daycare
Caregivers who smoke
Crowded living conditions
Low birth weight
Multiple birth
School-aged siblings
Chronic lung disease
Congenital heart disease
Exposure to environmental pollutants
Neuromuscular disease
Family history of asthma


Some of these risk factors can’t be changed, so parents should focus on the ones that can. In the first year of life, especially during the fall and winter, try to keep your preemie out of daycare environments. Make school-aged children wash hands and change clothes when they come home, avoid crowds, and don’t smoke. If you do smoke, smoke only outside and wear a jacket that’s used only for smoking and is removed when you come inside since smoke particles stay on clothing.


RSV Vaccination


For infants considered to be at the highest risk for RSV, a vaccine is recommended. Palivizumab, or Synagis, the RSV vaccine, is given as a monthly shot during the peak RSV season. Not every preemie needs Synagis, but talk to your doctor if:
Your baby was born at 28 weeks or less, and will be 12 months or younger at the start of RSV season.
Your baby was born between 29 and 32 weeks, and will be 6 months or younger at the start of RSV season.
Your baby was born between 32 and 35 weeks, will be 6 months or younger at the start of RSV season, and has 2 or more other risk factors.
Synagis can prevent up to 55% of preemie hospitalizations due to RSV. It reaches its peak effectiveness by the second dose, so talk with your doctor early in the fall to find out when RSV season is anticipated in your area.

Additionally, Kai's weekly appointments with the occupational therapist have been cut to every other week! She sees his improvement and wants to rely on his home care and "therapy" I do with him. That basically includes tummy time, practice holding toys and bringing them to his mouth, rolling, and eventually sitting. Whenever I have a window of opportunity to put Kai on the floor to practice all of these we go for it, but if he gets fussy we stop since he's basically not learning when he's fussy.

Happy 1st Halloween

Kai had a fun yet somewhat uneventful Halloween. Since we are quarantined for RSV season, we couldn't go trick-or-treating, but I took Kirra out and she scored tons of candy!


His costume was Dino the dinosaur dog from the Flinstones, but I could only get a blury shot of all us since Kai could hardly stand his costume!

Current Family Favorite

Did I blink and miss something? I thought Kai was a Preemie...

Kai has been doing exceptionally well! Its seems to be a trend lately that every professional that sees Kai has been impressed  with his progress. He's doing all the typical stuff a 2-month-old should be doing. He has been sleeping through the night, having his last bottle at 9pm falling asleep shortly after and then waking up at 5am or 6am for his first bottle of the day!

His head control is excellent and seems to keep getting stronger and stronger. He actually likes Tummy Time and   can definitely lift his head up on his own and slightly push himself up.

He had his second appointment with the PT doing cranial sacral therapy yesterday and she was impressed with his progress as well. It had been about 10 days since his initial appointment with her and when she started the session she said "Wow, he does not even feel like the same baby". She did the usual holding of his head with slight pressure and did not feel what she felt the last appointment. I guess he's a great self healer according to her! She also characterized his as having a strong body constitution- "Constitution is important because it gives an indication of the overall strength of the body."
She decided not to seem him again for 2-3 weeks rather than just 1 week! I was very proud of Kai yesterday, I should have taken a picture! But I will next time. She was having him do mini pull ups-he showed off his big muscles and did awesome!

We also took him to general surgeons at LPCH on Wednesday to follow up on his inguinal hernia and not to my surprise they did not find any hernia! That doesn't mean it can't ever happen, but for now he is free and clear!

On Friday he had his last follow up with the eye surgeon and he discharged him from his care since he healed just fine! He'll be seeing the regular Pediatric Ophthalmologist soon to check his vision.

Not to disregard any other issues that he has do to being born premature such as the PDA, weak immune system, and ROP, but I am always amazed how lucky we are that his "issues" are completely under control and he as of now is showing no signs of long term problems (in my opinion).

I'll try to keep the updates coming as often as possible!

Thank you for the love, support, and prayers!!

Miracles Do Come True

Kai still amazes me everyday-he is truly our miracle baby. Today was one of those days where I had to take a step back and relize how far Kai has come and incredibly strong he is.

For me to recall the first week of Kai's life was the epitome of an emotional roller coaster for myself, Adam, and everyone around us. We had no idea what we were in for and we felt like there was nothing we could do to help Kai, yet we still had this underlying emotion that everything was going to be ok, that he was going to be ok, and that Kai was not going to be another statistic. I remember telling Adam that he's going to defy the odds and he felt just as confident as I did about that statement.

I'll never forget the day the doctor told us about his brain bleed on his 5th day of life and gave us the "option" of continuing life support. I couldn't believe anything she was saying because even as tiny and helpless as he was then he still had something about him that made me believe he was a fighter and nothing was going to hold him back.

I feel like I've told this story 100 times (and I might have) but it never gets old. Every time I share the story of Kai's miraculous journey into this world I am always overwhelmed with the fact that he was and still is so brave and was meant to be here with us.

I only bring up this story because it seemed as if his brain bleed was going to be detrimental to his health from that day on and anything that would go wrong would be due to his severe grade four bilateral brain bleed. As you all know the bleed has been resolving on it's own, however we were also told that we would not be able to tell what damage that bleed had done and what Kai would be capable of doing.

Well if you've seen Kai lately you'd never know he was born 3 months early by looking at him and watching him. I can't even begin to tell you how well he's doing right now. Aside from a few "typical" preemie things he is overall NORMAL in my book and maybe in a few doctors too! Seriously, a lot of the professionals he's been seeing lately (GI, Opthamologist,OT...) feel like his overall health and state are very impressive. They're are impressed because it's unusual for a preemie born as early as Kai to do so well. It's possible obviously to do this well, but only a small percent-especially considering his brain bleed.

Today he had his usual OT (occupational therapy) appointment and it went well. She just did more stretching and talked about how well his muscle tightness was and how perfectly shaped his head was and she kinda went on and on. So positive, I loved it. We also weighed him and he's still averaging 7-10 ounces each week making him 11 pounds 4 ounces! What!?!

Following that appointment was Kai's first Cranio-sacral therapy session with a Physical Therapist. It was an hour long of enlightenment and excitement. She basically pointed out most things I already knew about Kai's body and that he could use work without a doubt, but not on a severe basis. She felt around his body and his head and did something and said he was a fast healer-I know :) he sure his. But she was referring to something she had just done that helped release something. (Sorry I'm so vague about it, I usually forget details on the first visit) I told her his complete history and she just could not believe he had all that baggage and yet portrayed himself to be a healthy little infant. She was great in so many ways and I'm so glad we saw her today and will continue to see her. I also asked her what I thought might have been a silly question, but I basically asked her if it was too early to tell if he had any traits of having cerebral palsy and she shook her head and said no, he's fine. She didn't hesitate to answer me and said it with confidence. She told me that you would be able to tell if something were off this early and all she found was just a lot of tightness in his trunk to upper area due to prematurity and felt a little "strain" on the left side of his head, which was not a big deal as his course of treatments should help.
She said just like his OT said that anything that needs work on now has nothing to do with his brain bleed. This appointment was just another testament to how well loved Kai is and the power he posses to be just as strong as any other healthy kid.

So Kai will be seeing this PT for cranio-sacral therapy every week to every two weeks to simply help adjust his tightness and work on developmental areas. I'm so excited she can help, however she doesn't take Kai's insurance so I'm setting him a fundraiser to help pay for thaws appointments! Each visit is $75 and it's unclear how long he will see her, but we really want to make it happen so the link will open up on this blog to take donations :)
Although he does seem so healthy and stable, we want to make sure he is still challenged enough to keep thriving and stay on the right path!

On top of all that, Kai has been the most amazing most adorable smiler I've ever seen! He smiles a ton these days, I'll try to get a good picture of his huge grin!

Thanks to everyone for thoughts, prayers, and love! Kai is forever grateful as are we!

Five-Month Kai

Happy 5 months to our strong little man! We are the luckiest parents in the world.
Thank you for choosing us!

Xoxo
Mom, Dad,  & Kirra

Flashback Friday

2011

January

Happy New Year!  

March

It's a Boy!

May

Happy Mother's Day!

Wordless Wednesday

Finally Out of Breastmilk!!...

Today is the last of my frozen breastmilk supply which means Kai will be drinking a special formula used for babies born premature. Since formula is SO expensive we might be able to get it paid for through WIC! We'll find out tomorrow. Although Kai has been growing and gaining weight from the breastmilk (currently 10lbs. 12oz.) I think he might start packing on the pounds even more with formula!

The GI doctor yesterday was impressed with his weight gain and his overall health that he won't need to see him until December. Basically all he did yesterday was increase Kai's dose for the Prilosec.

Also coming up next week is an appointment with a Cranial Sacral Specialist. I'm not so sure what she can help Kai with, but I'm sure that she will be able to help with something!

Kai's new art piece for his room. Personalized by our friend Eric...

Gained another 9 ounces making him 10 pounds 3 ounces!!

Still taking about 3 ounces every 3 hours (75-100mL).

Doing great with OT,  just still needs a lot of stretching.

Eye exams are going well and no issues as of now!!

Go Kai!!

Kai's mini photo shoot