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.