Sunday, October 24, 2010

Rewind-5 Days until Discharge- Important Info on Keeping Casey Healthy

With Casey home, we knew we had to post some guidelines. I know I'm a rambler so I was hoping Scott would do it. I worked for two days on this blog, and he comes in in the last few hours and writes his blog. Saying the same thing but way better. Better phrased and way more concise. So, if you want the short but sweeter version of this post, head on over to Scott's Blog.

Or, he told me to just write "I know this is long, but if you truly loved Casey, you would read every word=) "
This year has had some cruel lessons in how fragile life is. I know there's no use in feeling guilt but I still struggle daily not to be consumed by it. I see stories about triplets or read blogs and I analyze every little thing about my pregnancy. What could I have done differently? When Dr. O and Scott were threatening to put me in the hospital at 24 weeks, what if I had gone instead of telling them that they were being silly. Why did I run errands to Lowe's and Home Depot with Scott that monday? Why didn't I just stay home? Although I didn't go into labor until two days later, I feel like the braxton hicks that day started it all. Up until that point, I did everything I possibly could do to take care of my babies. Even with assurances that these things were okay for a pregnancy, I cut out any medication. I suffered through allergies so I didn't have to take allergy medicine. I cut out caffeine. No tylenol. No hot dogs. No cheese at all. No fish (that was an easy one). Scott wouldn't even rub my feet because we heard rumors that it was bad for pregnancy. That one killed me. My poor swollen feet. And still, with all I did, I still mull over all the choices I made trying to see if there was something that I could have done differently to have prevented premature delivery. And maybe our girls would have had a chance. There's no one blaring event or thing, and I'm so thankful. If I ever find something concrete that can pinpoint blame on, I don't think I could live with myself.

When Rory and Allison passed away, we felt helpless. So many factors that were out of our control. With Casey, we are aware that there risks that she will face that we can prevent. With Casey, we know there are a lot of things that are within our means and we have set out to educate ourselves. And with Casey's immature immune system, infection continues to be the number one concern in keeping her healthy. One virus in particular, RSV, is a particularly brutal infection that threatens preemies.

Which is why we chose to celebrate my 32nd birthday, 5 days before Casey's discharge at a talk at Kapiolani Hospital on RSV. We learned tons of valuable information on how RSV affects babies and why it's so especially dangerous for preemies.

RSV stands for Respiratory Syncytial Virus. RSV is a highly contagious virus that causes infection of the lungs and breathing passages, and is the number one cause of pneumonia and bronchitis in infants under the age of 1. It is very common infection and in adults, it presents much like the common cold. But with infants, especially preemie babies, it poses a much larger threat. I follow the blogs of other moms with preemie infants, and just last week, one mom had to admit her son back into the hospital because he contracted RSV. Thankfully, they were able to treat it with antibiotics and release him. The doctors told us that of the babies who graduate out of the NICU, over half will be admitted to the hospital within the first year. When Casey was a month old, one of her baby friends who had just been released from the NICU was readmitted to the hospital just days later with a fever. We will fight to keep Casey on the better half of that statistic at all possible. And we will need your help.

This is Casey today. She is just a few days away from her due date. She looks like any other newborn baby. She is now 7 lb of chubby cuteness with ten chubby fingers and ten chubby toes.

But Casey is not like other newborn babies. Casey was a preemie baby. More specifically, Casey was a micro-preemie baby. Despite her appearance, the next few years of Casey's life will be defined by the lasting effects of being born extremely premature. She has spent the last three months in incubators, with IV lines in her hands and belly button, PIC lines dumping medicine right above her heart, breathing on ventilators, CPAPs, nasal cannulas, feeding tubes, blood tests, and even two blood transfusions. Casey has come so far. Staring at her sweet chubbiness, sometimes we forget how rough her beginnings was.

Casey is now the size of other full-term babies but her lungs and immune system are still immature. If you picture the lungs as trees with each little leaf representing essential air sacs needed for oxygen exchange, then Casey was born with a bare tree with sparse foilage. She had less mature air sacs and thus had to work much harder to gain enough oxygen. It's a tiring process which is why we struggled to have her gain weight. She just burns more calories than other babies just to breathe.

It will take Casey years before she catches up to other babies. Even when she reaches a year old, her lungs will only have 50% of the capacity than if she had been born at full-term. She already has less to start with and if it's compromised by sickness, mucous, contaminants, she can get very very sick.

Prematurity also robbed Casey of another key factor. Babies receive their mother's antibodies across the placenta. Since babies don't have a mature immune system for the first year or two of life, those antibodies keep them safe. Casey was born 3 months early, she missed out on precious time and has less maternal antibodies to fight off germs.
Any infection, minor or major, poses a larger threat to Casey than to other babies of the same age but born at full-term. Under doctor's orders, we have to quarantine Casey to the best of our ability for the first year of her life. It's especially critical during the next few months until flu season ends (March). Hawaii, with it's temperate climate has the honors of having RSV cases all year round but they are especially prominent during the flu season. Casey qualifies for receiving a shot every month during flu shot that might help alleviate RSV symptoms if she contracts it, but there is no vaccination for RSV. You cannot build up an immunity to it. You can get RSV repeatedly. It's easily spread and so common that it is believed that almost all children get it by the time they turn 2. Adults who have school-age children or work with school-age children often get it, but confuse it with the common cold. The virus is spread through the air in humid droplets and can live on surfaces like door-knobs, cell phones, clothes for up to 6-7 hours.
So, as excited as we are to have Casey home, we know we have to adjust our expectations as parents. I had always pictured dressing her up and taking her to church to show her off. Sadly, every doctor and nurse that talked to us all said the same thing. They advised us not to take her to church. We know how excited our church family would be to see Casey, but it would increase her exposure to germs exponentially as people at church tend to be so friendly and want to love on Casey. I sighed as one nurse practitioner told us to take turns staying home with Casey so the other one could attend church. Hmmm, I'm guessing since Scott is a pastor, it's going to be my turn to stay home all the time.
We really need your help in reducing Casey's exposure to all infections, not just RSV. We have restricted visits to our house for at least the next two months (until 2011), but we need to mindful even when we do have visitors. Please don't be offended if we ask you to wash your hands even if you aren't going to hold or touch Casey. Please understand if we politely decline your request to hold her. We dread having to restrict the very support group that has been there for our family and held Casey in prayers for each of the 81 days she spent in the NICU. But as one of our nurses always says, we have to be the voice for the voiceless. We have to speak up for Casey. It will be hard and the best way you could support us is knowing what poses a threat to Casey's lungs and watching out for Casey alongside of us.
There are certain people who pose a risk to Casey. If you fall into the following categories, please bring it to our attention.
1. You had a cold/scratchy throat/fever/cough/runny nose at some point in the previous 2 weeks.
There's no real way that you can possibly know whether you have passed the contagious stage of any infection. Infections can take up to 2 weeks to fully run their course. And viruses and bacteria are easily spread by transfering between surfaces or through moist droplets being exhaled. You may feel fine but still be transmitting these agents. Don't risk it. Wait until enough time has safely passed.

2. you live with or have close contact with someone who fulfills the criteria above

3. You work in a daycare, you are a teacher, or another occupation that works with young children
The doctors told us that gradeschool teachers most likely come down with RSV yearly because of their job. They may not even know it thinking they just have a small cold.

4. You have small children.
Again, RSV occurs at an alarmingly high rate in young children. One thing the hospital considers with preemies is whether there are other siblings in the household. This puts the preemie at a greater risk. Parents who bring their micro-preemies have had to resort to pulling other siblings out of school and home-schooling them to protect their micro-preemie.

5. You are a smoker
Oh, boy, this is most of my family. This is not an infectious agent, but the factors in smoke damage and suppress lung function. My sister is a lifelong smoker (YOU BETTER QUIT, SIS!!) and has 5 daughters. She has been diligent about smoking outside the home far away from her girls. Even with that, when my baby niece was just a month old, we had to rush her to the hospital where she stayed for a week. The doctors informed my sister that even with all her precautions, the smoke was clinging to her hair and clothes and was causing Chayne's respiratory problems. Yet another reason I hope my family quits smoking for good.
If you meet any of the criteria above, please limit the dangers of exposure. If you're sick or have been sick, refrain from visiting or keep your distance if you should happen to run into us until you are in the clear. If you are a smoker or have young children, take a shower and change into clean clothes before visiting.
We are quarantining Casey and have restricted visitors from our house. Even when visitors are allowed,
1. Treat our house like a hospital.
Everyone must wash their hands even if you have no plans of touching Casey. There are hand-washing stations set up at every sink. Wash hands from elbows to fingertips for 1 minute. And then rewash at least 15 seconds before touching Casey. Use paper towels to dry off.
At home or if we meet outside the house, don't kiss Casey's hands or mouth. She likes to suck on her fingers and will ingest any pathogens that way.
2. Be another voice for Casey
If you see a well-meaning stranger approaching Casey, speak up. Tell that grandma to keep her paws off our baby. =) In the sweetest way possible of course. Or not.
Thank you for continuing to team with us. We feel so indebted. I feel like she's not just our daughter. This community has risen up alongside of us and covered her with prayer and love. You brought her home to us, and you will keep her with us.
If you want to know what else you can do, there are some things that would be an added bonus.

1. Get the current flu shot

This will just help diminish the chances of Casey and also of us coming down with the flu. If we become sick, we also cannot not be around Casey.

2. Get the DTaP booster shot

You might have seen the commercials but there has been an increase in cases of infants with pertussis, whooping cough. The infants catch pertussis from the adults in their lives. Hawaii had one case this past year, and for this sweet family, it was one case too many. Natalie Norton, a spectacular photographer here on Oahu, and her family lost their baby boy, Gavin, this past January. Her blog is a heart-wrenching testament to the importance of pertussis vaccinations. I remember following her blog and instantly knowing I wanted to get the booster shot to keep our children safe. Adults only need the booster shot once every ten years. Just one shot, so simple. Gavin would have turned one this past week. If you're curious, please read their story and leave support on her latest entry.

3. Become CPR certified

Let's surround Casey with a community that can confidently take on emergencies.
4. Be patient with us.

We're new parents. We also have little experience with newborn babies, let alone premature babies. I have created this blog to educate my family and friends who are still learning about life with an ex-preemie baby. We appreciate the advice and understand people are trying to provide comfort, but few have gone through this experience. Casey wasn't just a few weeks early, she was a few months early. She wasn't just a small baby weighing only 4 or 5 pounds, she was a tiny baby weighing only 2 pounds. RSV is just one of the risks that loom nearby because of her prematurity. Micro-preemie babies are at higher risk for cerebral palsy, autism, vision and hearing problems, ashthma, digestive problems, and 40% will exhibit mild to severe cognitive disabilities by age 8.
We pray that we have the serenity to accept the things we cannot change, the courage to change the things we can, and the wisdom to know the difference.


  1. Very informative. I will tell anyone and everyone I see not to touch Casey (this will continue until she's at least 18, probably 21).

  2. Jus wanted fo say i read it all see u all in 2011! Jus know my thpughts and heart are wit u guys and baby casey...

  3. Nin Jiom Pei Pa Koa ( may be another choice. i know alot of people use it, its also non alcoholic, though it's effectiveness is not as good as alcohol based cough medicine, but it's still good to use on not so serious scratchy throat.