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. 



Wednesday, October 22, 2014

Pumpkin Patch

Over the weekend we went to our first pumpkin patch. Being in quarantine, we went to a small, low-key patch near our house. The kids crawled and climbed around and selected their pumpkins, and had a great time. We had free range of the whole patch, no company, and were happy to pay a total of $8 for our 3 pumpkins. It was a good way to spend the morning. 


***
The little dragons are definitely in toddler stage. They are fiercely independent and want to do things on their own. They both can climb into their high chairs by themselves - James only needs a boost due to his short legs. 
We have been doing some artwork and  finger painting and getting pretty messy
They also really like to send videos to their cousin Marri in Washington and see pictures / videos of her. We have a mini pen pal thing going on, which works out the best because all the kids like to watch their videos over and over again. Sometimes we will FaceTime with our family and friends and the little dragons do really well with that too. 

They also are very into cuddling and "I love you" right now, which makes for some pretty amazing and heart-warming memories for us. 

Wednesday, October 15, 2014

October 15th

The little dragons are doing just fine. They are loving and adorable and wonderful. I am so thankful for every day we have together, and that they are growing and making progress every day. It is what I wished for in my pregnancy and I am truly lucky. It has not been a path without difficulty and lots of trials along the way- but we are so very fortunate. 

Today I want to take a moment and give our page to those babies that fought the good fight for pProm or prematurity. Our friends who passed on. Our friends whose stories are cut short, only to be finished another day.

Our story could have been that way and for one reason or another, it is not. So today we give our love to those families that don't have babies to hold in their arms, those families who fought just as hard as we did and still had to let go. Their grief and pain is unbearable and unimaginable.

Today we remember Jacob, Jordan, Pip, Bennett, Caitlyn, Nico, Spencer, Quinn, Elijah, Judah, Annabelle... And so many more, many that will never be forgotten and that are always in our hearts. 

1 in 4 has lost a child. Today is infant and pregnancy loss awareness day. 

Monday, October 6, 2014

The IFSP

 
We've been in Early Intervention (EI) with DDRC through Jeffco for two years now - well, officially at the end of this month as James was discharged from the NICU on October 28th, 2012. 

If you were to just look at the testing side of things, the little dragons are ahead in some areas and behind in others. Keep in mind, they don't adjust for prematurity past age two. 

If you were to compare our kids to other kids, it might bring up feelings of sadness or grief, loss or uncertainty. But for me, and most of our family I suppose; we are absolutely thrilled at every SUCCESS the kids have made and the fact that they are breaking down barriers and doing great things every day. 

The little dragons have absolutely no idea about the mountains they've climbed - or the ones that they'll have to face in the future. And I hope they continue to make progress, fight for survival, and strive for a great life every step of the way. 

So, at our annual IFSP (Individualized Fanily Service Plan) meeting today, we talked about goals and tried to figure out a strategy for EI therapy for the little dragons over the next nine months. They will officially graduate from EI services at their 3rd birthday in June, and from there we will be in a whole new world. 

James will receive PT and OT to help him catch up in his gross and fine motor skills, which he is significantly delayed in. While James has made great progress, the tests only look at skills, not progress. James has graduated speech therapy and currently has expressive language skills several months beyond his age. 
(Baby Yoga, James' new favorite thing). 

Maisie will receive followup with speech therapy and PT through the next six months to make sure she doesn't fall behind. She is slightly behind in gross motor skills and ahead in all areas of language. 

A year ago when we did the same annual IFSP, James had no teeth yet and was unable to feed himself. Only two months later he had ten teeth, was feeding himself 75% of the time, and within four months of the IFSP had begun crawling on all fours. During this time James started to experience weakness due to increasing pressure in his spine from the tethered cord and arachnoid cyst. We had no idea; had we been able to address these issues earlier perhaps it would have made a difference. 


This time last year, Maisie was still cruising and hadn't begun walking on her own yet. That would happen three months later. She preferred to eat things with a smoothie texture because she still lacked proper tongue control from her Macroglossia. Maisie spent her week in the PICU from Enterovirus, Rhinovirus, Bronchiolitis & Pneumonia. She continues to struggle with respiratory issues and we worry every second of the day about impending illness and overexertion - and what the future looks like for her lungs. 


***
The tests don't look at the child, or what the child has gone through. It's a yes or no - with zero adaptation or room for commentary. This is where we love our medical providers and the group of specialists that we see- they value PROGRESS versus comparing our kids to every other person on the planet. 

These kiddos are important; they are the little dragons, who have survived the impossible and are changing the world, one day at a time.