Friday, November 22, 2013

All together now

Maisie came home this afternoon. She is feeling much better and is happy to be with James and her toys. 

She got a bath to get rid of the sticky gunk from the hospital and had her oxygen delivered. Maisie will be on 1/4th of a liter at night and during naps. 

The PICU at Swedish was top notch and they did a great job managing her care. I would highly recommend them to anyone in our situation. We were well attended to and they were skilled at handling everything we were dealing with. We hoped to never be there, but it likely isn't going to be the last time. 

Our PSA is this: frequent hand washing for 20 seconds is the best way to prevent the spread of disease. If you feel sick, stay home from school or work. You may be contagious before you exhibit symptoms, so if you have been around sick people it may be a good idea to stay away from anyone who is at risk to develop complications (seniors, infants and toddlers, and those with immune disorders). 

Thursday, November 21, 2013

Bronchiolitis, Rhinovirus, Enterovirus

The results are in. Maisie has a severe case of bronchiolitis thanks to her prematurity and chronic lung disease. It's cause has been determined as enterovirus and rhinovirus. 


Both of these illnesses are at the end of their "season" here in Colorado. However, we have a lot of cleaning and disinfecting to do to ensure James doesn't get this illness when she comes home. 

We don't know how Maisie came up with these illnesses, but we are formulating a plan for better managing at home. We need to tighten up on hand washing, disinfecting, shoe removal, and make sure Maisie doesn't get her hands into anything she shouldn't. 

Currently Maisie is at around a liter or so of low flow oxygen. She's done a few room air challenges but they haven't gone too well. She is sleeping better and still receiving her nebulizer treatments. She still has an IV in but her medications have cut down considerably. Lots of equipment is out of her room now. She gets her nose suctioned out often because she has some pretty stubborn boogies. Best of all, Maisie has started eating! Her first meal was apple juice and french fries, and today she's had two huge bottles along with fritos, puffs, sausage, and eggs. 


The plan is to continue to wean on oxygen so that we can go home on low, or better yet, no oxygen at all. It could be later this evening or tomorrow depending on how she does. Currently Maisie is missing her brother and is finally starting to talk again (but not to the mean nurses and doctors). 

Even with her wild, feisty and grumpy attitude Maisie has a huge fan club here and everyone likes her a lot. They are trying to make her smile and show her talents even though she is resisting with every ounce of her body. But- the old Maisie is starting to peek through. Last night she told the nurse how to turn off the light ("down") and she managed to get tangled in lots of equipment as I chased her around the room. 

Thanks for all of the well wishes for miss Maisie!

Tuesday, November 19, 2013

PICU

Sunday Maisie started coughing. She and James have been toggling on and off with some minor cold symptoms for a few weeks now but nothing major. They've been tolerating everything well. 

However, Monday morning came around and Maisie was miserable. She was retracting, wheezing and having a lot of trouble breathing. After several hours at Dr Jim's office and many nebulizer treatments, we concluded that our attempts to treat her weren't working. Her oxygen requirements were going up drastically and she couldn't even be transported by car on two liters of oxygen- which is where her requirements peaked late afternoon Monday. 

So, an ambulance transport was called and Maisie got her second fun ride. She headed to Swedish, to the Rocky Mountain Hospital for Children's extension there. 

We spent the first few hours in the Pediatric ER and then Maisie was admitted to the Pediatric Intensive Care Unit or PICU. By the time she was upstairs she was on 8 liters of high flow oxygen and continuous breathing treatments. She was lethargic and had a fever, and the simple tests of RSV and influenza were negative. They are running more tests but for now, the illness causing Maisie's symptoms is unknown. 

This morning the respiratory team and our nurses were seriously campaigning to intubate Maisie because of her symptoms. Currently the doctor feels that she is doing okay and is managing on the high-flow cannula, but that could change. She continues to get breathing treatments to help open up her lungs, along with antibiotics and IV fluids.
 
The biggest issue for Maisie right now is sleep: she has only managed to get 4 hours of sleep in the last day. She is restless and agitated, which is only contributing to her illness. 


***
Being back at Swedish has been interesting. I have very strong memories and emotions from this hospital. Several people remember us (apparently I'm the "no-water lady") and the PICU is right next to the NICU and down the hall from Labor & Delivery and the Perinatal Center. I haven't felt up to making visits to our old stomping grounds yet but hopefully when Maisie is feeling better and we have both babies in tow. 


Sunday, November 17, 2013

World Prematurity Day 2013


We hope everyone is wearing purple for preemies today. It's getting to be a big day in the world and there are a few facts we'd like to point out:

pProm happens to 150,000 women in the US annually and is a leading cause of premature birth; it is a factor in 40% of premature deliveries. 

The biggest complications of pProm are infection and premature birth. The longer latency a woman has (time between rupture and delivery) is beneficial and gives the baby time to develop further; however, infection is a significant concern and can be fatal to mom and baby if not closely monitored. 

The following medical therapies are very helpful in pProm pregnancies / neonatal stays: prenatal course of steroids, surfactant, high frequency ventilation, and nitric oxide treatment up to 40% if necessary. A level IV NICU with these capabilities must be involved in all pProm pregnancies as premature births are anticipated. 

***
They say 1 in 10 babies is a preemie. In my family, it's a lot different. Maybe we have a black cloud. But- just for grins I'll describe the largest part of my family and how prematurity has impacted us.

My maternal grandparents had two children, neither of whom were in the NICU or were born prematurely. 0%

They had four grandchildren, including my sister and I. Two of the four were born prematurely and spent time in the NICU after birth. 50%

There are four great grand-children. All four spent time in the NICU after birth. Three of the four were born prematurely. 75%

Prematurity and birth complications have been a huge burden on our family. While we are strong and we understand prematurity, it is a tough thing to see. We wonder: will we ever be able to take home a "termie", right after birth, like normal people do? For my sister and cousin and I, this is a real concern. 

I am so proud that the little dragons will grow up with someone like their Auntie Rachel, who is a survivor of their journey as a micro-preemie born 30 years ago. She is such an inspiration to us. And we have her parents who always told us when the little dragons were in the hospital, "They get bigger", and "Keep a journal, because you will forget".  How very, very true. 
Micro-preemies must stick together 


***
Here's to World Prematurity Day 2013, and all the amazing doctors, nurses and families who make up this community. We are proud to be a part of it. 



Thursday, November 14, 2013

Work smarter, not harder

James is something else. He really is brilliant but as his parent it can be frustrating at times. 

Monday afternoon is therapy. We had a consult with OT to evaluate James's unwillingness (or inability) to feed himself. I swore that he was being stubborn but we wanted to make sure there wasn't anything else going on. Since he will put other things in his mouth, I wasn't too worried- but I admit that it was getting to be a little irritating to feed him everything, while Maisie self-feeds all the time. 


So, on Monday afternoon we were waiting for our therapists to arrive and I thought I would give James a Frito Scoop to play with while sitting in his chair. As soon as they walked in the door, that little dragon had shoved the Frito in his mouth and proceeded to chew on it and eat the darn Frito for the next half hour. He used both hands, dropped it and picked it back up, and was thoroughly interested in FEEDING HIMSELF. 

The OT thought we were nuts. She kept asking us if this had ever happened before, and I kept reiterating that he does not feed himself. Our therapist was shocked. I didn't even get a photo because I couldn't even believe what was happening!

So, baby James decided to feed himself for the first time ever to impress the cute OT lady, then promptly went back to being a little Emperor demanding to be fed as soon as they left. 

He definitely knows how to work the crowd. 
***

This past weekend the babies got their Synagis shots. Maisie passed the threshold for weight and had to get two shots. They were definitely very angry about it. 

Maisie weighs 17lbs 9oz. 
James weighs 15lbs 1oz. 

***
Maisie loves to "tickle" your toes. She also loves to eat dirty socks and bugs. She can make monkey noises, blow kisses, and climb anything. Maisie even has a jail named after her! Watch out, world!


Wednesday, November 6, 2013

Movember

Last year Jimmy created some amazingly hilarious photos of the little dragons and we continued the tradition this year. In honor of Movember - raising awareness of men's health issues, we are breaking out the mustaches. 

Babies with mustaches, that is. 
Maisie, 2012
James, 2012
Cousin Giblet, 2012
Maisie, 2013
James, 2013
Cousin Giblet, 2013

Happy Movember! 

***
This is a friendly reminder for everyone to get their flu shots and pertussis if you're around little ones. The little dragons are going in for their Synagis shots starting this weekend for the next five or six months, and we have our other shots. Do you?



Friday, November 1, 2013

Halloween 2013

The little dragons spent the day playing with their cousin and being wild. Auntie Ca gave them a Spider-Man shirt and a princess costume that they had a blast in all day while we worked. 

By the time we got home, it was time for Trick or Treating. We bundled the babies up in their dragon costumes (or alligator/dinosaur, if you may) and headed outside. They each had their glo-sticks and halloween candy buckets. It was a blustery and cold evening so we visited a few homes in our cul-de-sac and called it good. 


We let the dragons loose, ate lasagna and dessert, and had everyone in bed by "night-night".