Wednesday, December 26, 2012

6 months old

Yesterday was Christmas and we had such a busy day. The little dragons had presents to open, lots of visitors drop by, and of course, gifts from Santa. Overall we feel very loved - the sheer generosity and graciousness of our families was so prevalent this Christmas, our first with Maisie and James.

***
We received gifts of dressy outfits and did baby modeling for a bit yesterday also. Although we couldn't go out to show them off, we figured we'd better do something constructive with them. What better way to celebrate six month birthdays than capturing the silly, smiley, happy and serious faces of the little dragons?

Jimmy and I have thousands of pictures of the babies on our iPhones. We are getting pretty good at capturing their looks and have to be resourceful due to our limited discretionary means and doctor's restrictions. Therefore, we had a pretty good set up yesterday for the photo shoot: four outfits, two holiday tablecloths, water and hairbrush, headband, two iPhone cameras, lighting, diapers, wipes... Everything was in place.

The babies were in between meals of banana brown rice cereal (yummm!!!) and their lunch bottles. We did not want to risk spit up on these great outfits. Halfway through, Maisie was so hungry that if her red dress were edible it would have been devoured. We took a lunch break and the babies rested before their next outfit. Luckily we did not have any spit up in the second half.

Everyone was cooperative and the biggest fuss we had was when Maisie got overheated in her winter fuzzy jacket that came with the second dress. It was adorable but had to come off after only a minute because she was miserable. Maisie is definitely her father's daughter! We also had a pants fiasco with James's suit. Because we have twins we have plenty of clothes floating around; the best matching item went on James and we proceeded to take photos. We only subjected poor James to Maisie's skinny black jeans with the bum ruffles for a few photos and then Jimmy couldn't stand it any longer. James did the rest of the first shoot sans pants - everyone was much happier if you can imagine.

***
Just another day in the lives of our little dragons. Happy six months, babies!







Tuesday, December 25, 2012

Merry Christmas, Little Dragons

The little dragons know all about Santa thanks to a book from their Great Aunt Joanna called "Where's Santa?". It has been a favorite these past few weeks.

Last night while we were relaxing, Jimmy was watching the Santa tracker on the iPhone. When it appeared that Santa was only a few thousand miles east of here and on his way, we told the babies that they needed to get to bed before Santa came. James finished his whole bottle in a matter of minutes and started fussing until we took him upstairs.

Every time we mentioned Santa coming, James would giggle and laugh, smile and coo. He knows all about Santa. Every time we delayed in putting the little dragons into their Christmas onesies or got held up in the bedtime routine, James would start fussing and crying instantly. It was like he was so worried about being in bed and ready for Santa to come. As soon as he was tucked in and wearing the proper outfit, James was giggling and smiling up a storm. Maisie was wide eyed and expectant. It was absolutely a night we will never forget!

***
Today we will spend the day at home in baby quarantine. Our families are coming by in shifts so we don't feel too remote from the festivities. We've received gifts from near and far for the little dragons, from family and friends and of course from Santa. We are so thankful for these precious moments we have with our sweet babies. Tomorrow they hit a big milestone: six months old! We have so much to celebrate and be thankful for.

We hope your holidays are as joyous and happy as possible. Thank you for sharing in our journey. With love, Erin, Jimmy, Maisie, and James

Sunday, December 23, 2012

The purée parade continues

Nanners? LOVE 'em!
Apples? Meh.
Avocado? The new favorite!
Sweet Potato? On deck, we will see.
Rice cereal? Old reliable, but nothing to write home about.

The consensus is that these little dragons have expensive tropical taste. They would be right at home on an island - which is not surprising if you think about where they spent their first few months.

It's been fun to try new foods, watch their facial expressions, and see how their tastes develop. When the babies were in the womb, we ate extremely well and ate lots of fruit (the only thing I craved). Hopefully they will have good palates and be willing to try lots of different foods along the way.

***
In other news, we've been continuing on our extended /amended vaccine schedule of 1 per week as directed by Dr Jim. We weighed in this past Friday and are happy to report that the little dragons are getting big!

Maisie: 10lbs 9oz
James: 9lbs 4oz

They have been sleeping 10-12 hours at night, which is great for all of us!


Wednesday, December 19, 2012

$3,744,304.61

That's the total of billed healthcare services for the little dragons. Our insurance gets a discount on services and it brings the cost to about $2.5 million, which is a luxury home's value over our $2 million annual maximum. I'm thankful for Medicaid for taking on the rest of the costs for the babies. Also, there are still 12 days left in 2012.

I just got word from Premera that we are cut off.

Monday, December 17, 2012

Living under a rock

When the little dragons were in the NICU, I hadn't heard about the Aurora shooting until a week after it happened. If it didn't happen on a monitor by the bedside, I didn't know about it. We were completely submerged in the life of the NICU.

Friday we were so busy that by the time I'd heard about the school shooting at Sandy Hook, the day was over. We don't watch television with the babies and any news is seen on our iPhones. That being said, we miss things sometimes.

I don't know how to feel about this tragedy. I'm so numb - and perhaps it's because we aren't too far removed from that constant feeling of teetering on the edge of life and death. It's terrible beyond belief that the momentary actions of one person can forever detriment the life of another.

***
The little dragons have had a blast eating nanners and are so happy when its "nanner time"! They've been eating like tanks. In fact, when they are sleeping 10-12 hours at night, it seems like they eat all day long.

Yesterday Maisie was still hungry after a full bottle and nanners so she decided to eat James's hair. She may have had a dual purpose in trying to get him a new 'do. Her slimy tongue plastered his hair down on the side of his head, and it took two shampoos to get it clean. Sometimes I think Maisie thinks she is a cat - she meows and cleans her brother's hair. It's very strange - but cute.

James has a favorite game he likes to play called "Roll". It's where he does tummy time on your chest, and rolls off either side where you'll catch him. He could do this for hours. Last night after nanners all James wanted to do was to play Roll. I was a bit hesitant, seeing as how I love bananas SO much and lots of movement makes these little dragons throw up. But after a few of James's pouty faces I gave in, and he spent the next hour playing Roll. Luckily there was no spit up incident either!

Sometimes it's good to live under a rock.





Saturday, December 15, 2012

Nanners

Friday was a big day. We went to Greenwood Pediatrics for the Dtap shot, then headed over to see our amazing friends at the Swedish Perinatal Center, and we broke out the Baby Bullet.

The Baby Bullet is a food processor kit specifically designed for baby food. Everything is there to make and store your own baby food. As both of the little dragons seem to be having teeth coming in and are biting up a storm, we decided to try some homemade banana baby food on a spoon.

The baby bullet obliterated the "nanners" in a few seconds, and I separated the batch out into the storage cups and brought a tiny bit to Maisie to try first.

She loves nanners! However, Maisie's tongue is still getting in the way. She was curious though, got her hands involved and seemed to thoroughly enjoy the new taste. She got some down and licked the rest off her face.

When it was James's turn for nanners he blew the competition out of the water and was great eating off the spoon and swallowing. He's not so sure about the flavor though - maybe it reminds him of the medicine they gave to prevent thrush in the NICU. Anyhow, James finished his tablespoon and took a great nap afterwards.

PS - for those of you who know me - I detest bananas, especially the smell, and this whole experience was a stretch. It was the first time I'd ever purchased or peeled a banana. But I'm happy to say it was a success!




Thursday, December 13, 2012

Nom nom nom

Maisie is teething. Because of her macroglossia or congenitally enlarged tongue, it's difficult for her to use traditional teething rings and toys. However, she loves to chew on any part of human flesh she can get her gums on.

It might be James's face or hand, Jimmy's arm or finger - these are all Maisie's teething toys of choice.

James is incredibly patient with the whole thing and often offers his hand to Maisie for a little snack. I hope he continues to be so generous when that little tooth bud comes through.

At night lately Maisie has been a monster and she knows it. She turns into baby banshee and nothing satisfies her. Luckily she's still sleeping through the night, give or take a few nightmares here and there.

I genuinely hope Maisie can continue teething and eating with this tongue situation. We'll see what Dr. Jim has to say at our next appointment.

Saturday, December 8, 2012

I love my mohawk!

Last night after bath time Maisie had an absolute meltdown. I could not, for the life of me, figure out what she was baby banshee screaming on about. She had a fresh diaper, warm pjs, food coming up shortly... And then it dawned on me. She needed her hair redone.

Lately Maisie is all about the mohawk. She's definitely punk rock and a little bit prima donna - she's gotta have things her way. Maisie loves listening to daddy's favorite music, especially the heavier stuff. While she still loves her "Little Bunny Foo Foo", I figure our little dragon might be the one to turn it into a punk song one day a la Me First and the Gimme Gimmes.

***
I grabbed the brush really quickly because Maisie's hair was drying fast, and tamed her wild hair. Into the mohawk it went with little effort. She calmed right down, so I went into the kitchen to grab their rice cereal dinner.

When I returned, both babies were fast asleep. They didn't eat for another 45 minutes. Bath time sure wore them out!


Tuesday, December 4, 2012

Baby tanks

Rice cereal is a big hit! The little dragons have both tried and love their new thick bottles of Neosure with gluten free baby rice cereal. They are a bit more fulfilled and seem to enjoy the new taste and texture. Another thing they enjoy? The faster nipple required to allow the thicker cereal to go through, meaning they finish their food in record time. We call the little dragons the "baby tanks" when it comes to eating because they demolish every bottle given to them.

I can't wait to start making homemade baby food with our Baby Bullet food processor and storage system, but that will be a little bit down the road. We will make our own baby food using fresh ingredients to save money, eliminate waste and ensure the babies are eating as well as possible.

It is recommended that for the first year the babies stay gluten free. Since we have a family history of celiac disease, we will keep a gluten free household and hope that neither of the babies ends up getting celiac too. What's interesting about celiac disease is that if you are never exposed to gluten, you will never get celiac and all of the complications that come with it. Luckily it's becoming easier and easier to eat gluten free and though I'm not sure how it will all work out once we get to school age, for now we have a plan. And the babies are doing great!



Sunday, December 2, 2012

8+ hours!

Last night marked the third night in a row that the little dragons slept through the night! I checked on them a few times and did notice that James had wriggled out of his O's (oxygen) but after a little maneuvering we all went back to sleep without a hitch.

Physically I feel so much better and more able to care for the babies. Restorative sleep is really important, especially when you're dealing with auto-immune conditions. Luckily the babies caught on that they are big kids and that they need their sleep as much as Mommy and Daddy do!

The last few days when they've woken up in the morning, James and Maisie just want to play and have the happiest looks on their adorable little faces. They wait patiently for their bottles and for me to get everything set up. Lately we have been eating in front of the Christmas tree so they can stare at the lights and colors while they gulp down the bottles. James is doing great with his dribbling and rarely uses a bib any more.

Happy Sunday from the little dragons!



Friday, November 30, 2012

State of the dragons

Today was our five month follow up with Dr Jim. We were anxiously awaiting the weigh in and hoping that the appointment would go on without a hitch.

Maisie
Weight: 9lbs 6oz
Height: 21 inches long
Oxygen: stable at 1/16th of a liter
Loves: Daddy, sleeping, chewing on her hand, mohawks, being wild, bath time, pooping (when it happens, which isn't often), antagonizing James, smiling, and kicking off her socks.

James
Weight: 8lbs 5oz
Height: 20.25 inches long
Oxygen: stable at 1/8th of a liter
Loves: Mommy, eating, sleeping, chewing on his hand, his Snuggly and anything else warm and fuzzy, bath time, chewing on Maisie, pulling off his oxygen, and Christmas lights.

We got the okay to try rice cereal and we are slowly doing a select number of critical vaccines. Otherwise, the little dragons are doing great and are right where they need to be!






Monday, November 26, 2012

Five months old

The little dragons are five months old. Their NICU days are fast becoming a distant memory, but we are so thankful for the technology and people who allowed us to bring home two healthy babies.

By now they've both rolled over many times but currently find gnawing on their hands much more interesting. They love to talk, click, and coo. Of course Maisie is the chatterbox of the two but James gets his fair share in too. Cuddling is enjoyable, but recently they've been antsy for twin time or moving/grooving on the floor or the piano play mat.

They are fiercely independent and yet very loyal and loving with one another. The babies are so different; they have distinct personalities that started way back in the NICU, and some traits that were evident even before birth... For example, Maisie has always been a night owl and James an early bird. They would be perfect angels during the day while in the womb as grandma watched me on bed rest but went nuts when Jimmy got home from work. Now, the pattern is the same. Our nights can be chaotic until we all find time for sleep. Luckily James is closer and closer to sleeping through the night which means more sleeping for Mommy! Maisie, on the other hand, would sleep all day if given the chance.

Each day we are learning something new. It's simply fascinating to watch these little dragons grow and develop. We are excited for what's to come!




Thursday, November 22, 2012

Our first Thanksgiving

We are celebrating our first Thanksgiving in baby quarantine mode at home, and our families are dropping off food later today so we can have a Thanksgiving feast of our own. It's the first time we've been apart from our families for this day, so it is a little bittersweet - but it's all for the sake of our little dragons.

We have so much to be thankful for this year. First and foremost, we are thankful that our babies overcame what seemed impossible, are home with us, and are thriving. I'm thankful for the hundreds if not thousands of people who made that happen... from our families and friends who have been supportive day in and day out, to the medical professionals who treated us, to the housekeeping attendants like Luz and Claudia who kept the hospitals clean.

We are thankful for purposeful and flexible employment, and for the ability to get health insurance. I'm thankful that I still have a job, though I was off for 19 weeks this year - more than is legally allowed through FMLA. I'm thankful for healthcare reform because our policy has a $2 million ANNUAL maximum versus a lifetime maximum. The old way we would have been kicked off our plan by now and because of pre-existing conditions we would be essentially uninsurable... yet making too much money to qualify for Medicaid or other assistance.

I'm thankful for our friends and family who will do whatever it takes to help the little dragons, and who understand why we can't spend the holidays with them. They've done a public service for not only our children but at-risk populations everywhere by getting the flu shot and pertussis vaccines.

Finally, we are thankful for our little dragons- they teach us so much each and every day, whether it be compassion and patience or time management and love.

Happy thanksgiving to you and your families from Erin, Jimmy, Maisie, and James.

Wednesday, November 21, 2012

Twin time

The little dragons love twin time. That's when they get to hang out together and play, sleep, or do whatever strikes them at that very moment.

I could watch them for hours; their behaviors and socialization is just fascinating. Maisie is definitely the on-demand wild child - she's fun and playful yet demanding and in charge. James is sweet, curious, compassionate, and empathetic.

Maisie loves to touch James's face, his hair, and pull out his oxygen. During twin time she has to have a hand on James at all times. James, meanwhile, loves to watch and observe, and is learning the tricks of the trade from Maisie. He's learning to "talk" or coo but it still sounds like a whimper or light cry. They pick up traits and skills from each other. A few days ago, they both started an infatuation with licking and trying to find their thumbs.

One of the things that happens is what I like to call the perfect storm- when the babies both need something at exactly the same time. Usually my rule of thumb is to deal with the most serious situation first, like who is throwing up or who is screaming for food. Often these situations occur at the same time, and I've come up with a pretty good system of handling the perfect storm.

For example: eating. The little dragons love to eat together. It saves me a lot of time but it is hard work. When the loudest baby starts screaming, they will get their counterpart to chime in. That's my signal to get the bottles poured and warming. Then, I change Maisie's diaper and position the babies slightly pancake style on the boppy pillow. I double-bib James because he's a drooler and we get started. When one baby needs to burp, they are patient and wait to start eating. Mostly they just stare at one another and enjoy the close company. When they are done, it's time for James's diaper and food coma.

Last night after eating the babies were wild so Jimmy stuck them in the boppy and they were calmed right away. Maisie was happy yet a bit wild and flailing as usual, but James fell fast asleep. We couldn't help but think that this was how the babies were in the womb; Maisie free to move and punch and kick, and James constrained in his waterless sack. You can see that they love being together and know one another. It was priceless to see James's arms around Maisie, and her sweet smile as she tried to wriggle her arms around so she could a) find her thumb and b) touch James's hair.

Saturday, November 17, 2012

World Prematurity Day

November 17th is World Prematurity Day. Many organizations throughout the world, including March of Dimes here in the US work to promote awareness on prematurity and how it can be prevented. Wear purple in support of preemies everywhere!

In our case, we were lucky to get to 27 weeks at all. There was nothing to prevent, only expectant management of a situation out of our control. This is the case with so many women dealing with pProm. However, in our time in the NICU I've seen teenagers and homeless people who admit to little or no prenatal care. They admit to doing drugs, smoking, drinking. It was hard for me to witness. Granted, I saw ladies go full term and engage in the same bad behavior but I think it's our moral and ethical responsibility to give our children the best fighting chance possible.

Some stats for you: one preemie passes away every thirty seconds due to prematurity. In the US, 24 weeks gestation or 500 grams weight (1lb 6oz) is considered viability but babies have survived before those cut-offs. Each day you remain pregnant takes three days off a NICU stay. If you were to deliver at 24 weeks, the survival rate is between 40-70% depending on many factors. If you get to 27 weeks, survival can be 90% or greater. However, this is strictly prematurity and doesn't factor in any other birth situations like pProm that we dealt with.

***
So, how are the little dragons doing today? James is currently 7lbs 11oz, which is 6lbs greater than birth weight! He had a check up with Dr Jim yesterday and is doing well. Maisie is doing awesome and we think she's pushing 9lbs or more. We will find out on their next appointment on the 30th.

They've been well behaved for the grandparents while Jimmy and I work all week. Maisie is sleeping great at night, and James is figuring it out. They love "twin time" and are teaching each other things left and right. It's fascinating to watch them grow.

***
I will never forget when the Dr held James up over the curtain for us to see as he was screaming, just after birth. I knew they were going to be small but it still surprised me how small the babies were. And when I first Kangaroo held Maisie- her tiny fingernails scratched my chest and she kept sneezing on me. It felt so much more like a tiny kitten than a newborn. They have both grown so much in just a few short months. Prematurity might define their birth and their unique start to this life - three and four months in the hospital... but it's amazing how they overcome.

Tuesday, November 13, 2012

Click click

The little dragons are so incredibly smart they've already started communicating between one another. At first we weren't sure what to think- but sure enough, their tongue clicks are aimed at one another. They will click back and forth with me, Jimmy, and my mom.

James also doesn't want me to get a video of them "click talking". He will quickly purse his lips and stop what he is doing as soon as he sees me with my phone. Maybe they're conspiring against me- I don't know. Anyways, they are so adorable.

I sent the only brief video I could get to my sister in Washington, and she told me that Marri aka baby Giblet started running around the house clicking right after watching it. These kids are amazing!

Friday, November 9, 2012

Rolling, rolling, rolling!

It's hard for me not to sing the theme song from "Rawhide" here- and there is a little story behind this. Last year when cousin Marri aka baby Giblet was born, we stayed with our friends Eva, Tim and Nolan out in Graham, Washington for a few weeks. We had a blast. Nolan is adorable: red hair, brown eyes, wild and sweet- the little dragons will get along so well with him when they meet him. Anyways, Nolan has a favorite "toy" named Clyde the Cactus who sings the Rawhide theme. I can't help but think of Nolan, Marri, and all of our friends in Washington when I tell you about the little dragons' newest adventures.

***
Last night Maisie finally conquered rolling! For a baby who is 6 weeks adjusted or a little over 4 months old, we couldn't be prouder. She gets very vocal and aggressive when rolling, which is hilarious; but she rolled several times in both directions from her belly to her back.

The best part about the little dragons is that they try to "one up" each other. Peer pressure is a great thing, especially when it comes to reaching milestones. James saw Maisie roll and was not going to sit idly by. Though he has been rolling onto his side really well, this morning he finally did a full roll!

Maisie is wild and James is gentle. Their observations and interactions with each other are priceless. I'm so thrilled that they both are accomplishing a few milestones that they realistically don't have to meet for several months.

Wednesday, November 7, 2012

A week in the life

This week has been incredibly busy. We've been trying to get the little dragons on a schedule before I go back to work next week, along with taking care of necessary doctors appointments for James. It's been more than a full time job and I am pretty exhausted. Luckily my mom and Jimmy have been helping out.

Here's a glimpse into what our week has been like:
•James has had appointments with the neurosurgeon, cardiologist, ophthalmologist, and pediatrician.
•Both babies had their Early Intervention evaluation and plan written for services for the next six months to help with their development due to their premature birth.
•Worked with Apria to get smaller B oxygen tanks for appointments and traveling around town.
•To give an idea of just how cumbersome the little dragons' gear can be: the current D oxygen tanks weigh 8 lbs. Add that to the 7.5-8 lbs each baby weighs, plus the car seats (15.3 lbs each), plus the double stroller (38 lbs). Babies plus gear equals out to be 100 pounds, not including the diaper bag. That's a lot of lifting, pushing, pulling, loading and unloading, etc. I'm definitely feeling the effects of our journeys out this week.
•We took advantage of the beautiful fall weather and went on a few walks.
•The little dragons are growing like weeds! James weighs 7lbs 5oz and is 19.25 inches long. He grew an inch in the week since he's been home. Maisie weighs over 8lbs and is over 20.25 inches long.
•We voted, worked on insurance stuff, updated providers about the babies Medicaid and tried to work on thank you cards.
•The little dragons are eating 90-100 cc's (3.5 oz) per bottle, 6 bottles each per day and a total of 84 bottles a week with 8400 cc's or 294 oz of formula. This equates to a can of Similac Neosure every two days a cost of $16.50 per can. Per month this is roughly $250. Luckily we've had donations from the doctor and we've found a great discount supplier on eBay to save some money. Hopefully it will continue as the little dragons continue to eat more and more.
•Diapers: we typically go through 84-96 diapers in a week. Phew!
•Laundry in a week: three full loads for the babies. May be more or less depending on excrement / spit up episodes. Shout is our new best friend!
•Maisie is sleeping 6-8 hours a night and James is sleeping 5 hours.
•Maisie's favorite things: Daddy, bath time, sleeping, tummy time, squishy pillows, stretching, being wild.
•James's favorite things: Mommy, eating, his cuddly, his snuggly, Pandora music, conducting, a fresh clean dry diaper, and play time with Maisie.

Saturday, November 3, 2012

Tis the season for RSV

This morning we loaded up the vehicle with the little dragons and headed to the Park Meadows area well before our normal time to be out and about. This took a good deal of planning and organizing but we made it to our destination on time. No, we weren't heading to the mall this Saturday morning for some early holiday shopping... we had our first appointment at the Synagis Clinic.

Respiratory syncytial virus or RSV is the most common cause of bronchiolitis and pneumonia in children under two. Most every child will be infected with the virus by their second birthday, and most of these infections occur by six months of age. Preemies, twins, and babies with respiratory issues are at very high risk for developing severe RSV. It is a leading cause of hospitalization and can cause death in babies born prematurely.

Anyone can get RSV but adults and older children may feel like they have a cold or seasonal allergies. It is passed on through hand contact, touching, sneezing, and coughing, and is highly contagious. The best way to help prevent the spread of RSV and other diseases is frequent and proper hand washing for 15-20 seconds.

So- what are we and the little dragons doing to protect ourselves from RSV?
1. The babies got the Synagis shots, which is a booster of antibodies that helps to protect at-risk infants from RSV. They will continue to get this monthly through RSV season (spring 2013).
2. RSV Season quarantine: the babies won't be going anywhere with the exception of the doctor until RSV season is over (spring 2013).
3. Anyone caring for or visiting the little dragons must have had their Pertussis and Flu vaccines. They must not be sick or be around sick people. We can't take a chance.

Preemie immune systems are still developing and the little dragons are no exception. They are still too young to protect themselves from viruses and more- so we and the people around them must do everything we can to avoid another hospital stay, a sickness, and anything else that would set them back.

Thursday, November 1, 2012

Our first Halloween

The little dragons had a big day for their first Halloween. They were little pumpkins (sorry, no dragon costumes to be found at Build A Bear) and they had many trick or treaters come to the house. They wore Halloween outfits - though Maisie got through the whole day in one and James went through the other three. We still plan on dressing them up as Chipotle burritos at some point, but it will be a little later.

But, the more important news was that all of the Grandparents got to hold both of the little dragons together! It was a moment that none of them will forget soon.

***
Maisie has been working on her tummy time skills and has been doing a fantastic job. Yesterday she was moving and grooving and suddenly, she flipped from her tummy to her back. We'll take it as Maisie's first official roll! She was so thrilled with herself and wanted to do it again but couldn't quite figure it out.

James is eating up a storm and has quickly outpaced Maisie on the caloric intake side. He easily downs 100 cc's or 3.5 oz's of formula in a sitting. Whatever Maisie does, he is quick to follow. For example: Maisie learned to take her oxygen entirely off her face, then James did. Now they are having an ongoing "pull your oxygen off" competition. Maisie started rolling to the side, and so did James. I don't think he will be far behind.

Tuesday, October 30, 2012

Wild ones

We've had two successful nights and days at home. It's a bit crazier than we imagined, but only because we didn't have any expectations of how it would be.

When Maisie came home it was a piece of cake. It took her a bit to get things figured out, like how to scream like a banshee for our attention and that she could sleep all night. Maisie loves to sleep. But aside from that, it really didn't take Maisie long to find her own rhythm and she was very calm for the most part. And since then, every time we have visited James she has slept and been the model baby the entire time.

Fast forward to when James came home. Our four month old former resident of the NICU at PSL is used to noise, lights, dinging, and chaos. He's had a strict routine: every four hours they stick a thermometer under his armpit, change his diaper (several times) and feed him. He is like clockwork still. We just pulled him out of the only world he's ever known.

So, what have the past two days been like, do you ask? The little dragons work as a team: crying, fussing, demanding attention and food, and more. Their squeals and squawks are like a well choreographed chorus. They are jealous of one another and curious.

It's been an exhausting, sleep deprived, piano play mat sharing, classical guitar station on Pandora couple of days. We are thankful that we "borrowed" Freddy the Frog aka James's cuddly from the NICU because none of us would be getting any sleep whatsoever.

***
We had our appointments with Dr Jim yesterday and today and the little dragons are doing great. Maisie weighs 7lbs 8oz and James 6lbs 11oz. We definitely found a great doctor over at Greenwood Pediatrics. Today they gave us a ton of Similac Neosure that was to expire in a few months - saving us hundreds of dollars in feeding costs for the babies. We are so thankful.

***
In other news, we are getting dangerously close to our 2 million dollar cap on our insurance. We will see when the final bill for James comes in for PSL. This could be very bad news for the rest of 2012 if it happens. Luckily we aren't far away from 2013.

On a totally different note, we have 11,500+ views for this blog! This is entirely from word of mouth. We have had readers in 15+ different countries since June! Thanks to everyone who keeps up with the little dragons and wishes them well.

Sunday, October 28, 2012

Best Day Ever

After 124 days in the NICU - our family is finally together under one roof. We have so much to celebrate, so much to be thankful for.

Lots of people thought we would never make it to this point, and we are proud to have proven them wrong. People are not statistics - they are capable of accomplishing amazing and seemingly insurmountable challenges.

Determination is a powerful thing.

Here's to the next big adventure!

Friday, October 26, 2012

Fast forward four months

On June 26th it was over one hundred degrees and we finally got an afternoon of rain. On October 26th, we've had our first official snowfall and are fast approaching the holidays. A little over four months ago, I said goodbye to my bird-feeder and living room window view that I'd been stuck watching for over two months and moved into Swedish Medical Center.

Now, the leaves on our trusty front yard trees have all dropped and those birds are heading south for the winter. Once upon a time I had to put my hectic and busy life on hold for the sake of keeping our babies inside, reduced to watching the pollen collect on the pine tree branches and keeping up with way too much TLC on TV. Since June 26th, our lives have been frenetically busy with recovering, working full time, and of course, caring for our little dragons. I have not a minute of free time to watch the trees, birds, or TLC. What a difference a few months makes.

***
This whole experience has been eye opening, challenging, frustrating, wonderful, beautiful, rewarding. Our children are simply amazing. We've made friendships and met people that I will feel lost without - as I've spent the last four months with them and they've spent the last four months putting up with me. And truth be told, I can be a huge pain in the you know what - but so can my children - so we have to stick together.

With an end in sight to this whole NICU experience I wouldn't change anything for the world. I'm so happy with the care we received, especially from our primary nurses M, J, and H. They have kept us and our families sane when this crazy train seemed to be going off the tracks. They are the ones who made the most impact on our little dragons; set them up for success, fought for them and loved them like their own children.

Someday the NICU will be a distant memory... someday very soon. I'm not going to say when because I don't want to jinx the situation. However, as soon as baby James is in his car seat and broken out of jail PSL you can be certain that you all will be the first to know!


Wednesday, October 24, 2012

Surgery #7

At 10am James went into surgery at the Rocky Mountain Hospital for Children at PSL for a VP shunt conversion and possible hernia repair. Luckily the entire operation went smoothly and they were able to do both things without issue. The general surgeon repaired a large hernia along with some of the abdominal wall that had been compromised from his reanostomosis.

Shortly after surgery he extubated and was back to his feisty self, though he was extremely hungry. James visited with the Grandparents and sister Maisie, then was graduated to the 7th floor. Though he lost his window spot in his old room, we don't plan on James being there long.

***
Maisie slept most of the day while we waited for James to go into and get out of surgery. She was an awesome little dragon. The highlight of her day was going to rounds with the doctors. Maisie absolutely loved the attention she received from all of her friends in level III, and she finally got to participate in rounds like James had been doing weeks ago. The staff all commented on her calm demeanor, her big blue eyes, her smile, and of course her very cute tongue.

Monday, October 22, 2012

On second thought...

Let's get a shunt. And another hernia repaired. And let's stay at PSL another week.

I think that will be better than coming back for surgery in a couple months, don't you?

Everything happens for a reason, and in its own time - especially with baby James.

Thursday, October 18, 2012

Waiting

James hasn't been "tapped" since Sunday. His head size and hydrocephalus or ventriculomegaly is stable as of now and so we are not currently looking at a shunt. We are so thankful for James's progress in this respect, and we hope his good fortune continues.

Today James got a bath with the help of Grandpa Doug and weaned down to low flow oxygen. He's currently on 1/8th of a liter and is sat'ing high, so he may go lower. The words "James" and "discharge" have been said in a sentence on more than one occasion by more than one doctor. It may be sooner than later, mainly depending on the weaning of oxygen and the continued stability of James's head.

Meanwhile, James is just sitting tight at 6lb 6.5oz. He's bored silly and can't wait to break free from jail PSL to join Maisie at home. Luckily he has a great view from his room!

Monday, October 15, 2012

To shunt, or not to shunt, that is the question:

For the first time in the history of the little dragons, we had a surgery scheduled a week out. Don't get me wrong, we love the last minute fire alarms that typically happen when a surgery has to take place! They scheduled the 16th for James to have a shunt conversion, and we were all systems go... until this weekend, that is.

James suddenly stopped needing to be "tapped" for fluid and went 48 hours between taps. They started taking out less and less. Today after his head ultrasound, the neurosurgeon decided to cancel the surgery and watch James for a few more days. He may not need a shunt conversion after all. He may be one of those miracle babies whose villi starts reabsorbing the fluid and/or whose body stops producing excess cerebral spinal fluid. James might not need a shunt now, but he may need one later. We are in watch and wait mode.

***
In growth news, Maisie weighs 7lbs 2oz and James weighs 6lbs 3oz! They both are eating well and growing well, though James has some catching up to do.

***
I am asked about a hundred times a day how the babies are doing at home, if James is home yet, or when James is coming home. Perhaps its because I work with seniors and some of them have dementia. Besides that, everyone I know is so excited to hear about the little dragons and wants to know how they are doing every day. We are so thankful for all the thoughts, well wishes, and compassion we have seen from friends all over.

With all the extenuating circumstances, it's difficult to explain why James is still in the hospital and why he can't be home with us right now. James has accomplished so much, and he is almost there. Believe me, we are so ready to have our little dragon home with us!

So, what does James need to do to be able to come home?
1. Be on low flow oxygen. He's currently working on weaning but as of the moment he's still on high flow.
2. Have a plan with regards to the VAD / shunt or no shunt. We'd prefer not to have to come back to the hospital once we leave.
3. Have five days without a bradycardia episode. He's been doing awesome with this, so we hope he keeps it up with the above situation.
4. Car seat test, hearing test, continued eye exam, etc. These are all standard discharge plans.
5. Continue taking all feeds by bottle. He's doing awesome with this!
6. Stay healthy. We are heading into RSV season with two micro-preemies, one of which has very compromised lungs. Hospitals in general are not the healthiest of places. This is perhaps the most important key to James coming home.

Thursday, October 11, 2012

Stats version 2.0

•Days since pPROM: 211
•Days since delivery: 107
•Total days Maisie was in NICU: 83
•Total days James has been in NICU: 107 and counting
•Our goal: James to join Maisie at home by Halloween so they can be Chipotle Burritos (and we can get a free dinner)
•# of extubations: I've lost count
•# of blood transfusions: I've lost count
•# of surgeries: 7 (one for Maisie, six for James, and he has one more next week)
•Total billed to Premera Blue Cross: $1.6 million
•Total paid by Premera as of 10/12/12: $362,000
•Total paid by our family: $3400, my out of pocket maximum (thank you Premera and Medicaid!)
•Current cost of one month's supply of Similac Neosure for Maisie: $125
•Projected cost of Neosure for Maisie and James: $300-$400 per month
•Number of hours Maisie sleeps at night: 5-7 hours
•Number of real baths James has had in his lifetime: zero
•Maisie has: dark hair, blue eyes, olive skin
•James has: red hair, brown eyes, pale skin




Tuesday, October 9, 2012

Do a happy dance

Maisie loves her piano play mat. It's safe to say that it's hers for now, because when James comes home it will be time to share.

She loves to dance and hit the keys to play different songs. Maisie definitely knows what she's going to play and will change the song if she doesn't like it. Her current favs are "Little Bunny Foo Foo", "Five Little Speckled Frogs" and "This Old Man". Sometimes Maisie will shriek and squeal when she really gets going. Today Maisie was moving so fast she spit up, but at least she was happy about it!

***
We are also thrilled about James making it to 6 pounds! Today the Developmental Therapist and I came up with a plan to move him to four hour feeds instead of every three, meaning he gets more at a time but less bottles a day. I was surprised to find out this afternoon that they pulled James's feeding tube because the team at PSL thought he was perfectly ready to bottle feed all of his meals. Way to go, James!

***
I have to also give a huge shout out to the Grandparents, who are doing a great job (and have been for a while) supporting the little dragons and advocating on their behalf when we can't be with them. Currently, everyone is taking a care time and feeding shift with James, watching Maisie during the day while we are at work AND somehow managing their current lives/families/jobs. I feel like we are barely holding things together at times and I don't know what we would do without our amazing support system. We struck family gold. A million thanks to the Grandmas and Grandpas. XOXO