Friday, December 27, 2013

18 months old / Merry Christmas 2013


Holy Moly. Where do we begin? Maybe a run down of the past week or so, just to make sure we don't miss anything. We've been without phone service and had very sporadic Internet connection, so bear with us. 

Friday 12/20 - Christmas Party with Santa at my work. The babies had an amazing time and stayed up past their "night night" time. Maisie nearly exposed Santa's fake beard. James made a few new girlfriends. 

Saturday 12/21 - We packed all day and the babies spent the day with their Aunt Angie. She was exhausted. 

Sunday 12/22 - The babies and I spent the morning playing and eating the rest of the fresh food in our house, and then they went to my parent's house for their first sleepover. Jimmy and I packed and cleaned until nearly midnight, and although we missed the babies for our last night in our old house, it was more   important to get things accomplished. 

Monday 12/23 - Moving Day! We were up at the crack of tying up loose ends. The movers showed up around 10 and we were done by 3. We couldn't have been more satisfied with the crew from Two Men With Big Hearts. They were first class! The little dragons were still with grandma and came to our new house around 5:30. 

By 6:00, I was putting our new car seats in the car and we were on the road shortly thereafter. The agenda: James's first official haircut! He and Jimmy were scheduled for 7pm and we made it just in time. 

James absolutely loved his haircut. He was such a ham. He enjoyed every second of it. Maisie was impatient during the whole process and probably a little jealous that we didn't chop her hair off too. 
Richard Morrill, Owner of Modefi Salon and James before the cut. 



P.S. This was actually James's third haircut - he has had one for each brain surgery but we only received the locks from the birthday neurosurgery. 

After the haircuts we were in the car again, eating Chick Fil A, and heading back up the hill. When we got home Maisie was keyed up but James was out cold. She tried her best to wake him up but nothing she did worked. Once we got their bedding back together, the babies went "night night". 

Tuesday 12/24 - Christmas Eve. We didn't do anything except unpack. The little dragons played all day. They absolutely love the new house. It's a ranch and there's a lot of room to roam. They have their bedroom, a play room, and two living rooms to destroy with their thousands of toys. So far though, it's staying pretty clean. 



We watched a short snow storm as we cuddled on the couch, and we began to use the kitchen table and chairs with our booster seats for the first time. Lots of new changes around here! The babies learned to say "hot" (stove / fireplace) and "snow". 

Wednesday 12/25 - Christmas. Santa came overnight and a beautiful Christmas Tree appeared in our sunroom! We opened presents in the morning then headed off to my cousin's house for the afternoon. The babies ate a TON of food. Then, we went to Jimmy's parents house and ate more food. Lots of presents were opened by the little dragons! We made it home a little late for "night night". 


Thursday 12/26 - Happy Birthday, Little Dragons - 18 months old. We kept working on unpacking and organizing the house. The babies played with their toys and roamed around the house, eating carpet fibers, helping fix things, and throwing Chex everywhere. We went to lunch at Wendy's and visited Ace Hardware. 


Thursday, December 19, 2013

Amidst chaos

We are living in box land. The babies have been amazing but of course they are the least impacted by our impending move. The little dragons are on a "business as usual" type of schedule but they definitely know something is up. 


Yesterday we closed and officially became homeowners! The past week has been crazy getting last minute loose ends tied up and now, realizing that our move is extremely imminent, also trying to resolve a couple of issues with our new house in Conifer. 

Tonight we took the babies up to the house for the first time; they'd been there briefly during a tour but it just wasn't the same. They were thrilled and so excited to start exploring their new house. We have a lot to do, but it will be so worth it. 

***
Last week a post on another blog went viral about an 8 month old's Christmas Wish List. It was pretty fitting for Maisie, who loves to get in trouble. However, it just wasn't right for James. So, in the spirit I made our own little wish lists for the Little Dragons based on their current likes. 

Maisie (from left to right, top to bottom)
1. This carpet fuzz. Or that carpet fuzz. 
2. This fun "bath toy" aka toilet bolt cover. I've tasted it, and it was yummy. 
3. Floor puffs. 
4. Floor cheese, aged yesterday. 
5. Mystery floor food.
6. Oxygen tubing. 
7. My shoe, daddy's shoe, or any dirty sock.
8. Eating bean. Not to be confused with the sitting bean and throwing bean. Bean may be interchanged with other food item. Throwing bean or other item can be eaten after 24 hours if it is thrown somewhere where mommy and daddy can't find it, and fast fast crawling and escape plan is in place to evade capture. 

James:

1. Big green ball. 
2. Light up ball with holes.
3. Big red ball (Anne, please return to me).
4. Squishy light-up ball. 
5. Ball. 
6. Maisie's ball, which was my ball but she stole it. 
7. Both the green and red balls together. 
8. Night-night ball. 
***

And a final PS and milestone for this week: James pulled to standing in his crib! 

Sunday, December 8, 2013

On the move

The little dragons had their December Synagis shots yesterday and had to go out in the frigid weather. They did great as usual but were not very pleased with the whole thing. 

Maisie weighs 17lbs 14oz and James weighs 15lbs 7oz. 

When I got home last night I found a photo from last year, nearly 365 days ago, when we visited the Perinatal Center. The babies were just SO small then. I just had to compare them to today. 

Although these car seats (Graco Snugride 22's courtesy of There With Care) have been amazing for over a year now, the little dragons are just about out of them from a height perspective. 

So, for Christmas the babies have received a wonderful new present:

Hopefully these new Convertible Car Seats will allow our babies to stay rear facing for a very long time, which is the safest positioning. 

***

Over the last several months we've been busier than normal, and things are finally coming together enough that I think we can share our big news. 

The little dragons are on the move. We are buying our first home, are currently under contract and are due to close next week. It's been a crazy journey of ups and downs for the past 8 months, touring hundreds of houses with the little dragons in tow after work and on our days off. It's been insane and we are so happy that the next part of our journey is coming to fruition. 

We are moving to my hometown, to the foothills just southwest of the Denver area. While it will mean a longer commute, our new home will be a great place for the babies to grow up. We are thrilled. 

So, I'll do my best to keep updated while we are in chaos as we plan to physically move two days before Christmas and be totally out of our current home on New Year's Day. We might be crazy, but that's nothing new. 

Sunday, December 1, 2013

17 months old and other shenanigans

This post could have various titles. Our life has been so busy and is pretty darn hilarious at times... But I guess we'll settle for the traditional and do a summary of the past week or so. 


1. The Fight of the O's
How I wish they made surgical cones or something of the sort to prevent toddlers from pulling off their oxygen. Tender grips no longer work. Bandages and tape don't work. Creative swaddling, coercion, and begging don't work. Scare tactics and bribes don't work. Apparently Maisie is smarter than everyone else and she has decided that she does not need oxygen. Luckily we will get a pulse ox test this week to prove it.
The first and only night she wore her oxygen. 

2. Addicted to Pudding!
James has a problem. He is super addicted to pudding. We hope he will continue to gain some weight. We blame my mom but at the end of the day, we'll do anything to boost this little dragon's caloric intake. 

3. Words that rhyme with "Yuck"
The little dragons have so many words that they are coming up with. Interesting things come out of these little mouths - but we'll keep it PG. Words they know: mama/mommy, dada/daddy, papa, baba, night night, Mayme, ball, up, down, no, uh-oh, done, bear, book, baby, guck, go, bye bye, bum, bump, etc. They also communicate in their own language which sounds something like "ya-ba-da-ba" and "do-be-do-do-ba".


4. So yeah, I feed myself. 
James has been feeding himself pretty much everything. Veggie straws, chex, puffs, cheese, meat, and other finger foods. He definitely does things on his own pace, but he doesn't skip a beat. I am pretty happy that we developed an Early Intervention IFSP that we conquered before our sessions even began. 

5. Toys? What toys?
The little dragons currently are on a strike from toys. They will play with anything but their toys. Perhaps they just find real life more interesting - but they love getting into trouble and exploring. Today they spent a good hour playing with a box and a half an hour playing with a lid to a jar. They fought over the shopping cart and a few balls, and otherwise were entertained trying to climb the stairs and get in trouble. They do like to go to "Toy Island", but it's short lived. 


6. Planking. 
James's new thing is planking. He likes to climb on top of things and stay stiff as a board, and then escape to the other side. I am so proud of how far he's come and how physically strong he is (he can climb up the stairs nearly on his own now, and with help he could do it with just his upper body. He is THAT strong). For a kid who was Saran-wrapped for 15 weeks in the womb, swaddled for the next 4.5 months in the NICU, and who had so many things going against him he is making great progress physically. While he is behind Maisie from a motor skills perspective, he just does things on his own time. And when things happen they are pretty darn amazing. 


7. 17 month stats
Maisie: 17 lbs 1oz
James: 15lb 6oz

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". 

Monday, October 28, 2013

16 months old / James's home-a-versary

A year ago we went to PSL with Maisie in tow. James was in one of the tiny closet-like rooms on the 7th floor and we waited patiently for many things to get started.

His Broviac line was removed. We met with his surgeons. We met with the neonatologists, the Apria representative, and we signed lots of paperwork. His binders worth of medical files were condensed into a discharge summary of nearly 100 pages. For the entire morning he was wire free- all of the monitors had been turned off and removed, leaving James a free baby. We dressed him in an alien outfit and hat and once we got the okay, we were outta there! 

First we visited all of our friends on the 7th floor, and then went down to his old stomping grounds on the 3rd in the level 3C/4 NICU. He spent so many months there, causing trouble and commotion that we had a big party on the day of James's discharge. So many people just couldn't believe this day had come. 

For a little baby who had beaten the odds - was not supposed to live, survive, be here at all - he was going home on a relatively normal timeframe with just a bit of oxygen and no other wires or tubes attached. 

***
It's crazy for us to think we've been gone from the NICU for a year. Every single day I am reminded how lucky we are and how simply amazing our NICU team at PSL was and is. They are world class. From the respiratory therapists to the surgeons, to the nurses and doctors and developmental team... and many, many, more. 

We still visit regularly. The graduate NICU people with the exception of our primaries generally have no idea who we are - mostly because we spent a few weeks there. But our friends in the NICU remember us and our babies like it was just yesterday. They are so proud to see them healthy, growing, and off O's. 

***
The little dragons are 16 months old as of Saturday. We celebrated with a Trick-or-Treat street at my work. Cousin Giblet and Auntie Ca came into town, so yesterday we went to the Children's Museum and our cousin's birthday party. Today we did Build-a-Bear and the babies of course picked out twin bears.  



Here's what the babies are doing and loving right now:

Maisie:
Climbing, feeding herself, learning body parts, climbing, blue, getting in trouble, chattering, being wild, sniffing like a bunny rabbit, climbing, pointing, blowing kisses, getting messy, bulldozing over James and other "obstacles", shiny things, giraffes, making animal noises, stealing toys from James, climbing, reading books, being a Houdini, cruising and almost walking, opening and closing doors, turning on and off lights, trying to get into the refrigerator and dishwasher, getting into the toybox, hairbrushes, looking at photos of herself, and climbing (lord help us). 

James:
Exploring the house, getting in trouble with Maisie, fighting over toys, pulling up on things, the green ball, crawling all around the house, saying "ball" a thousand times a day amongst other things, eating anything as long as it's fed to him, the green ball, rings and small toys, musical toys, getting in trouble, eating clothes, bright green, chasing the green ball around the house, giggling, learning body parts, disco dancing, wipes containers, talking up a storm, walking with help, pushing the shopping cart, fighting with Maisie, opening and closing doors, and obsessing over the green ball.