Saturday, December 20, 2014

Feeling off

The last week Maisie has been fighting off some sort of an infection, but it hasn't really gone one way or the other and we've been thankful for that. She had to go back on oxygen overnight after a few pulse ox checks found her saturations to be in the 70's. We don't know what she has, but the doctor gave both James and Maisie Tamiflu because of the huge increase of people, especially children, with Influenza right now. 

Aside from being a little "off", it's difficult to say what is really going on with her. Given her history the doctor has been pretty proactive and concerned. It is better than the alternative. But, she isn't sleeping well, she's not eating well, and she's had some periods of grumpiness. And we've got the hypoxemia or low oxygen saturations she's been having. Maisie did have a fever over a 24 hour period last weekend and has had some lethargy. But that's about it. 

Maisie is doing a great job given the circumstances, keeping her oxygen on overnight and during naps and not even fighting it. She'll give us the cues when she has had enough and doesn't need the O's anymore. She's usually right. 

James has been on the fence with infection also- sometimes he seems to be not doing well and other times just fine. Hopefully all of their symptoms will resolve soon. 

***
We put up our Christmas tree and holiday decorations. The little dragons and really getting into the season. They absolutely love singing Rudolph the Red Nosed Reindeer and Jingle Bells. They like Frosty the Snowman and have been pretty good about keeping our tree and the ornaments intact. 

We are hoping for an illness free Christmas with our friends and family. 

Friday, December 12, 2014

20 pounders!

We've been waiting to post this update for a while, and seeing as how our doctors appointments are really infrequent these days we aren't weighed very often any more. From the NICU days that's kind of tough to transition to, but you get used to it when your kids stay in the same clothes for a year. 

They seem to be on a growth spurt recently- getting taller definitely and perhaps gaining some weight. But, the little dragons are keeping on their curve at way below the 3rd percentile and things are going pretty well. 

Maisie weighs 21 pounds, and James weighs 20 pounds. 

They are pretty much out of their 9 month and under pants due to length, but as clothes are sized all over the place we try to stick to the tall and skinny brands. 

Last weekend we visited Santa and James wore his Christmas outfit for the 3rd year in a row. The pants fit perfectly finally (it's a 3-6 month outfit), the vest was a perfect fit and the shirt was definitely on the end of its life span. Our first Christmas James went pants-less for most of our photos after wearing a pair of Maisie's ruffle-bum pants that he was not happy with. It's crazy to think just how far we've come. 

***
Yesterday we went to the spasticity clinic and learned that the AFO's haven't been helping James's feet transition to a more normalized position allowing for proper gait, which affected several of his muscles, limiting his range of motion and creating more hurdles to work through. We determined that he will need more extensive help to prevent his feet from permanently forming into a pronated position. He has made amazing improvements in his strength and abilities with standing/walking, and the AFO's have helped to stabilize him- unfortunately with some negative effects. Therefore we agreed to continue an aggressive therapy plan, do Botox injections in isolated muscles and create better orthotics next month. James will also have another MRI to make sure his spine is stable with no regeneration of the cyst. We are hoping that this will be a step in the right direction for James.
 





Sunday, November 30, 2014

29 months old & Happy Thanksgiving

This Thanksgiving week we were thankful for a lot. First, for everyone being healthy enough to go to Thanksgiving dinner events for the first time ever. Secondly, for time off of work and the ability to spend lots of time with family. Finally, we were thankful to resolve some very unpredictable well water issues that left us without water in the home for the past 10 days. Ah, the joys of being homeowners! 

Needless to say, we've been a bit busy lately. Here's what the little dragons have been getting into lately. 

***
Maisie
:
Book: Hop on Pop, Five Little Monkeys
Song: "Head Shoulders Knees & Toes", "Five Little Monkeys", & "Five Little Ducks". Currently learning Holiday songs. 
Words: Currently Maisie's into curse words. We are trying to figure this one out. She is also trying to figure out the subjective, objective, adjective and possessive pronouns of the English language. Maisie is also very good at predicting things to come. 
Toy: Dinosaurs 
Food: cheese, cookies, pancakes, waffles, avocado, fruit snacks, blueberries, beans, rice, tortillas, quesadillas
Animal: dog, kitty, monkey
Time of the Day: bath time, "Preschool" time (Chalk Preschool online). 
Activity: drawing, singing, jumping, painting, getting into trouble
Color: blue
Clothing Size: 12-18 months, 18 month PJ's. 
Shoe Size: 4 
Weight: 19 lbs 11oz at last checkup on 08/15/14
Height: 32 inches
Number of Teeth: 19+


James:
Book: ABC by Dr SuessHop on Pop, or any book with a ball in it. 
Song: "Twinkle Twinkle Little Star", "ABC Song" "Row Your Boat". 
Words: James is learning new words every day. He can say complicated sentences like "I'm rolling on the green ball" (while completing the activity). He is also Maisie's copycat, for better or for worse. 
Toy: Ball, shopping cart, drum, flashlight, turtle, seahorse. James loves to conduct a "symphony" by gathering all the musical / noise making toys and playing them simultaneously. He usually leaves to play with a ball and comes back only to restart one of the toys that's stopped playing. It's pretty challenging to listen to, but we try to be thankful that James doesn't have sensory issues with lights and sounds from the NICU like some babies. 
Food: pancakes, waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, pasta, chili, tortillas, cheese. 
Animal: dragon or bear
Time of the Day: playtime or "Preschool" time
Activity: playing with his ball, walking and standing with help, and chewing on his green blankie. 
Color: green
Clothing Size: 12-18 months. James is wearing 18 month PJ's now, but still wears 6 month pants. 
Shoe Size: 4, but with his fancy AFO's aka his "Green Ball Shoes" James wears a size 5.5 wide. 
Weight: 17lbs 9oz at last checkup on 06/30/14
Height: 31.5 inches
Number of Teeth: 19+



Friday, November 21, 2014

Prematurity Awareness Month

November is Prematurity Awareness month, and as we get further away from the NICU stay and the baby days, the effects of the little dragons' prematurity are less and less. 


However, they will be impacted by their premature birth at 27 weeks, weighing a mere 770 grams. They were classified as micro-preemies, extremely low birth weight deliveries- and with that came a 75% chance of surviving to their first birthday, solely due to prematurity and without even taking into consideration our pregnancy problems due to pProm. 

We definitely beat the odds, but not without a bunch of scars to show the world exactly what kind of a war zone the NICU is. We did not come out unscathed, but we are out and doing our best to stay out of trouble. 

***
No family should go through a premature birth, though 1 in 9 US babies are born before 37 weeks; over 500,000 births annually. pProm, our reason for prematurity, affects 150,000 pregnancies and is a leading cause of premature birth. There are pProm babies and other preemie births pushing the limits of viability every single day in this country. We've seen viability inch from 24 weeks and 500 grams to 23 weeks, 22, and now 21 weeks and 4 days - with surviving babies. The true quality of life of these extremely premature babies and the impact on their families have yet to be seen or understood - and often won't be for years down the road. The economic, psychological, and emotional costs associated with prematurity are far greater than often the system is equipped to handle. Whole families can fracture under the pressure of prematurity and the expectations after the NICU. The crisis of post-partum depression for spouses and PTSD is very real. These are secondary and tertiary consequences of a premature birth that need to be addressed.  

Prematurity doesn't end when a baby goes home, or when they turn 2. It's a constant battle with PTSD, with weight gain, meeting milestones, hospitalizations and therapy. Prematurity can feel like living on a sand dune, with the winds whipping all around you; eventually things might calm down so that you can make small but seemingly insignificant progress towards the next goal. 

With all of these doom & gloom statistics and challenges are the positives- preemies are the most amazing fighters and demonstrate an unwavering will to live and thrive. They are truly inspiring to be around. If nothing else, going through the journey of prematurity will create a vast appreciation for the amazing ways in which the human body functions and is built to overcome adversity. 

We are proud to be the parents of preemies and we definitely wouldn't have it any other way. This was our journey. We also are diligently working to help other families through pProm, aiming to extend latency and increase awareness of neonatal treatments that can dramatically improve outcomes for babies. 

***
So, the next time you see a can of food- remember that Maisie and James weighed a mere 27 ounces or 770 grams when born. Large cans of vegetables weigh more. Their heads were the size of baseballs, and they were as long as the serving spoon in your kitchen. Their handprints were the size of a penny and their footprints the size of a black olive. It's hard to gain perspective of how small 1lb 11oz really is. Even I forget. 


Wednesday, November 12, 2014

Zoo trip

Last week before the recent cold snap, we went to the zoo. It was the first day of our 3 day weekend and a beautiful day. We headed out early with my mom and got to the zoo right after opening time.

For November, the weather was perfect. The zoo wasn't too crowded and we got to see lots of animals. The best part though, was the fact that the little dragons were SO into seeing all the animals. They could recognize and name lions, tigers, elephants, monkeys, polar bears, turtles, giraffes - and so many more. I was very impressed. Before on zoo trips they weren't as engaged or interested, but this time was entirely different. 

They listened intently as a zookeeper explained about a polar bear's fur and blubber layer than helps keep them warm in the bitter cold. They stuck their hands willingly in a bucket of ice during a science experiment to demonstrate how a polar bear's fur works. They described what the animals were doing and how many they saw. 


We had a great time and thoroughly enjoyed a nice November day. The weather has become very frigid so we've been staying indoors and keeping warm and toasty. 

Saturday, November 1, 2014

28 months old and Happy Halloween

Oh my, how they've grown. 


We have been staying pretty busy lately. The little dragons' 28 month birthday came and went but we were busy gearing up for Halloween and Jamesie Day. 

We did a few things that we have never done before and we are pretty proud of. 
1. We went to a charity event called Boo in the Hills supporting the Mountain Resource Center. Celebrating two years home, I decided to bring the babies' first Halloween costumes (which were from Build A Bear) for comparison. The little dragons wore their same costumes from last year as they haven't grown much. We got a great Halloween photo out of it and learned about some pre-preschool education available in our town. The little dragons had a great time and we hope to do it again next year. 

2. We donated all of our baby clothes, hundreds of items stuffed into 10 huge diaper boxes and more, to There With Care. We spent some time chatting with the ladies at their new Denver site while the little dragons made the office their own. When we were new parents with the babies in the NICU, There With Care provided many baby items and essentials to us, including handmade blankets and car seats. Without their support we would have been scrambling at the last minute and they were simply amazing to work with. It was one less thing to worry about with two critically ill neonates in the NICU. So, to be able to give all of our newborn through 9 month clothing to There With Care was very therapeutic and we know it will go to good use. 

3. We attended the local high school Trick or Treat Street and ended up with a front page spot in the local newspaper. Who would have thought? Maisie makes a great headliner in her dragon costume, but of course it's only part of our story. 

***
For Halloween Day we carved our large pumpkin from the patch and finger painted the two small ones. We ate pumpkin pancakes and read Halloween books. Trick-or-treating was done in downtown Evergreen, and the little dragons collected a bucket full of "candy bars", followed by a pizza dinner. It was a great low-key evening. We will round out the weekend with a family Halloween Party tonight.

***
Maisie:
Book: Room on the Broom
Song: "Head Shoulders Knees & Toes", "Five Little Monkeys", & "Five Little Ducks". 
Words: Maisie is turning into a little dictionary. She is asking questions and learning every day. 
Toy: Mickey & Minnie Mouse, Baby Doll,
Food: cheese sticks, cookies, pancakes, waffles, avocado, fruit snacks, blueberries, beans, rice, tortillas, quesadillas. 
Animal: dog, kitty, monkey
Time of the Day: Playtime
Activity: drawing, singing, jumping, painting, 
Color: blue
Clothing Size: 12-18 months, 18 month PJ's. 
Shoe Size: 4 
Weight: 19 lbs 11oz at last checkup on 08/15/14
Height: 32 inches
Number of Teeth: 19+


James:
Book: ABC by Dr SuessHop on Pop, or any book with a ball in it. 
Song: "Twinkle Twinkle Little Star", "ABC Song" "Row Your Boat", and "Itsy Bitsy Spider". 
Words: James can sing over a dozen songs and his vocabulary is increasing every day. It's insane. James is asking questions and is very vocal. 
Toy: Ball, shopping cart, drum, flashlight, turtle. He seems to be interested in noisy toys right now. 
Food: pancakes, waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, pasta, chili, tortillas, cheese. 
Animal: dragon or bear
Time of the Day: playtime or Elmo Time
Activity: playing with his ball, walking with help, and chewing on his green blankie. 
Color: green
Clothing Size: 12-18 months. James is wearing 18 month PJ's now, but still wears 6 month pants. 
Shoe Size: 4, but with his fancy AFO's aka his "Green Ball Shoes" James wears a size 5.5 wide. 
Weight: 17lbs 9oz at last checkup on 06/30/14
Height: 31 inches
Number of Teeth: 19+




Tuesday, October 28, 2014

Jamesie Day

Today marks James's homecoming from the NICU two years ago, 124 days after birth. He spent just over four months at PSL, three of which were on heavy ventilatory support; had eight surgeries and only came home with minor assistance. He was discharged with an 1/8th of a liter of oxygen, no medication, and a week's worth of wound care materials to finish the healing process of 3rd degree burns sustained on his foot from an IV infiltration that occurred 6 weeks prior to discharge. 

Today James is making improvements every day in his mobility. His complications seem less due to his prematurity than from the spinal complications he has faced. The tethered cord and subdural arachnoid cyst caused pressure and weakness before we ever found the issue. It's impossible to know the impact these problems had, but James is making great progress in the aftermath. 

James is extraordinary in so many ways. He is sweet, silly, and determined like no one else. James lets no person get in the way of his goals or intentions. He is incredibly smart and intuitive. James thrives on positive energy and support. 

James loves anything and everything ball-related, but has a lot of other interests too. He could eat a whole plate of GF snickerdoodle cookies and a full batch of pancakes. He can sing a dozen songs and recite the alphabet. He knows hundreds of words and can say full sentences. James can run with his walker and/or shopping cart, and is walking very well holding onto one hand only. His legs are growing in muscle strength every day and his flexibility is increasing exponentially.

We take every single milestone as a win against the losing odds we were given all along the way. James came fighting from day one, and continues to fight. We are so thrilled to be celebrating two years home as a family. 
Year one. 
Year two.