Sunday, March 31, 2013

Anniversary / Easter

Today is our six year wedding anniversary, and it happens to be Easter. We spent the weekend on a short vacation thanks to the generosity of a few select people (Mom, Brian, and Jimmy).

When we returned from Grand County this afternoon it was clear that the little dragons enjoyed their time with Grandma Margie, Grandpa Doug and Great Aunt Joanna. They were exhausted but glad to see us. Though it was great to get away and catch up on some much needed relaxation and sleep, we are glad to be back with our little dragons. We can't wait to take them up to Grand Lake and to many other places we love to travel to.

***
The babies were in Easter themed outfits and as usual, we took this opportunity to get some photos. Maisie kept stealing James's bunny ears, probably because teal blue is her favorite color right now and she is obsessed with shiny things like jewelry and pretty clothes. After she got the ears off, she yanked on his hair really well, and James didn't even flinch. Someday I'm sure he will get her back. Right now, he's mellow.

James is still eating everything in sight and talking up a storm. Maisie is getting very mobile and is sitting very well unassisted. Things change daily and we were glad that there were no major changes or milestones over the weekend.

***
What a great way to celebrate our six years married, thirteen years together - raising Maisie and James.

Tuesday, March 26, 2013

9 months old

Maisie is feeling better. She's nearly back to her feisty self, though she still is raspy and has a cough. We are on the nebulizer for a few more weeks and continuing our albuterol and corticosteroids. The Nose Frida is our new best friend and we are learning to suck boogies with the best of them. (On a side note, I don't think I will ever think of a straw the same way again - thanks babies.)

Dr Jim saw the babies today and was so impressed by many things. First, that Maisie did so well with bronchiolitis (viral infection of the bronchioles in the lungs) and did not require hospitalization. Secondly, that James is not sick. Thirdly, that the little dragons are doing so well and thriving!

We always like good news like this, especially from experts like Dr Jim. We take his knowledge and background in neonatology and pediatrics as a great sign that the little dragons are doing just what they should be, and more.

The weigh in was interesting as Maisie kept mostly steady due to her illness. She was 12 lbs 9 oz and 24.25 inches long, while James was 11 lbs 15 oz and 24 inches long. If I'd kept his socks on he would have been 12 lbs.

***
In other news, our March for Babies walk is fast approaching. We have t-shirts available for anyone who walks and donates $25. Donating is easy: online at http://tinyurl.com/teamlittledragons2013. If you prefer, we can take cash or checks the day of - just let me know! Deadline for ordering t-shirts is April 8th.

We are at $420 of our $626 goal - thanks to Auntie Ca, Terri, and Cousins Liam & Marian all the way in Ireland. Thank you to everyone who has donated to this wonderful cause!










Friday, March 22, 2013

Virus

One little dragon came down with a cold, and that turned in to a cough, and now she is quite miserable. Poor Maisie is dealing with a virus that has her very under the weather.

Unfortunately our home remedies worked for only a few days and Thursday morning we knew it was time to make the trek to see Dr Jim. She was wheezing, had no appetite, and a cough that would not stop.

We saw Jenna, Dr Jim's counterpart, along with nurse Jayne (who had incidentally given the babies shots twice in the last week). They embarked on a full work up and determined that a virus is responsible for her symptoms and decided on a course of action. The appointment was very long but the office staff would not let us leave until they were certain that Maisie's condition could be effectively managed for the next 24 hours.

Luckily we were able to come home and avoid hospital admittance, though we were given a nebulizer and albulterol for breathing treatments. Maisie is feeling better, but she's still not 100%. The nebulizer treatments are helping, along with all of our other home remedies that we have been doing the past three days.

Last but not least, we invested in a Nosefrida. It's a suction device that allows a caregiver to suck boogies out of the infant's nose. It's absolutely horrendous but this boogie vacuum works like a charm. If it keeps us out of the hospital I'll do anything!

Get well soon, Maisie.



Sunday, March 17, 2013

St. Patrick's Day

We celebrated yesterday and are recovering from a long and eventful day.

The little dragons got their last Synagis shots of this season and weighed in at a whopping 12lbs 14oz (Maisie) and 11lbs 10oz (James). We are all happy to be over that hurdle though we know that RSV season is definitely NOT over - in fact, PSL is full of pediatric patients with RSV at this very moment. It's frightening and we definitely don't want to be back there under those circumstances.

For our St. Patrick's Day feast the babies tried colcannon, ham, and gluten free cupcakes. They also ate banana rice cereal for breakfast and zucchini at lunch. Yesterday was not a big bottle day. James started drinking out of a sippy cup with his spoon fed meals because he is a big boy and seems to be boycotting his bottles lately. He must have gotten the idea from baby Giblet, who has an awesome princess sippy cup.

Auntie Ca and baby Giblet spent their last evening here and they brought the babies shamrock headbands to match their sleepers. They could not get enough of their "ears", and baby Giblet had an awesome time taking the headbands off of the babies heads.

It was a bittersweet night because we had to say goodbye; it was the end of their vacation and today they are flying back home to Seattle. We will miss them tremendously but hopefully there will be another vacation in our future!

***
On a side note, Auntie Ca has organized a team for the Seattle March for Babies. If you are in the area and would like to walk or donate to her go here: MandJDragon - Snohomish County WA

For the Denver March for Babies on April 27th we are still miles away from our goal of $626. There are several that have donated (thank you Fran, Stacy, Holly, Mom, Sally, Janet, and Aunt Joanna). If each of our hundred plus readers donated $3-4 dollars we would have met our goal. We also need walkers - and you should sign up on the website to pre register. If you donate $25 dollars and walk you will receive a custom Team Little Dragons T-Shirt!

Donate or sign up to walk here: Team Little Dragons

PS- our family's story will be featured at the walk! Don't miss it.



Thursday, March 14, 2013

Gush.

It was one year ago when our water broke at 12 weeks and one day.

We were not given a good outcome yet we were not told to terminate, like many pProm moms are. Luckily we made it through pProm and the NICU with two amazing little dragons who are thriving and doing everything they should be.

The grief and trauma of that day is still fresh. The minor car accident first shook me up, and then I headed into work. I was a mess, but then again I was a hormonal pregnant woman who had just gotten over a bout of the Norovirus and had zero energy for anything. I wanted to stay busy to keep my mind off things so I stayed at work.

Three hours post accident, my water broke. It was a huge gush and I knew immediately that something was incredibly wrong. My clothes were soaked and I tried to clean up as best as I could. The doctors office called regarding the earlier accident and I calmly mentioned the newest incident - but of course they were skeptical. They arranged an appointment for the late afternoon and I called Jimmy to let him know.

I attended a meeting and I tried to calm my racing mind. Sometimes you just know that something is amiss, and I definitely knew that we were in trouble. How much? I couldn't be certain.

A few hours later we met at the perinatal center and had our fears confirmed: no fluid left for baby b. This wild ride had officially begun.

***
I drive by the place where I was rear-ended every day. By Swedish, where I had countless appointments, did bed rest, and where the babies were born. I drive to PSL or St Joe's for work sometimes - it brings back so many emotions and at times, so much grief.

Yet I put one foot in front of the other, staying the course, driving in the same direction. I know someday I will get past the trauma of this experience but it will take time. I firmly believe that we were chosen for this challenge for a reason - perhaps because we are strong enough and determined enough to handle it. There are people in our lives that I am certain could never have done what we did. In the end I'm grateful that this challenge was ours to conquer and to overcome.

Monday, March 11, 2013

The Denver Zoo

We are spending this week with Auntie Ca and cousin Giblet, who are visiting from Washington State. It's been fascinating to watch the little dragons with their cousin, who is just nine months older but is talking, walking, and as cute as can be.

Though we are on quarantine we thought it would be a great time to go to the zoo. It was cool today but we bundled up and loaded everyone in the car. The zoo was wonderful because the few families we saw kept to themselves and the babies finally got out of their living room environment and had a new experience!

We saw many animals up close and personal: lions, tigers, monkeys, gorillas, giraffes, elephants, rhinos, leopards, and more. What was amazing about this trip was that if the animals were not immediately nearby they came up to us within minutes. I'm not sure if these little dragons are animal whisperers, but it was a wonderful trip.

James loved watching everything and taking it all in. Maisie watched the monkeys closely as they raced around the enclosures and she even growled with the tigers. She spent the whole trip with her tongue stuck out - and we have yet to decide if Maisie was trying to be a lizard or just enjoying the cool breeze on her tongue. James looked as though he was trying to make sense of the great big world we are in.

We can't wait to go to the zoo again, and perhaps the next time will be when we go to the PSL reunion in May.

Thanks to Great Aunt Joanna, Grandma Margie and Grandpa Doug for our first zoo experience!



Thursday, March 7, 2013

Eyes? Check.

The little dragons have been routinely going to eye exams to check on their ROP or Retinopathy of Prematurity. When babies are on oxygen and are ventilated for a lengthy amount of time ROP is a major concern and can lead to many visual complications. James was all over the board in oxygen saturations while vented for 13 weeks, from satting 100 to 20 (or lower). They were concerned about ROP and for a while, he was stage 1-2.

Luckily Maisie was cleared soon after we left the hospital but James needed a check up every two weeks. The eye exam is not something I'll go into detail about here- except to say that it is usually the thing most NICU nurses dread.

So, we've been hauling the babies over to Wheat Ridge for the past few months, waiting for hours and getting the exam done for James. On Tuesday both babies had a routine exam done - using lights, Elmo's, and more. It was a lot more pleasant than the typical ROP exam.

The good news? The little dragons are cleared of ROP without any medical intervention - AND they don't have to return until 2014 for another exam.

We are moving on up in the world. I'm sure our NICU docs would be astonished at this news that we escaped ROP - but then again, we do things differently.

Tuesday, March 5, 2013

Why we walk

I was saving this post for later but now is an opportune time.

Why are we participating in the March for Babies on April 27th benefitting the March of Dimes?

Started in 1938 by Franklin D Roosevelt, the March of Dimes has been in operation for 75 years to help children. A few of the things the March of Dimes spearheaded? Polio vaccines, newborn screenings, prenatal screenings, neonatal intensive care units, surfactant therapy, and their current mission of preventing premature birth.

For example: it was 50 years ago when John F. Kennedy's son Patrick was born at 34 weeks. The baby was placed in a high-pressure oxygen chamber, the newest technology at the time, but lived just two days because he could not be properly ventilated. If he were born today his odds of survival would be nearly 100 percent. Following this there was a surge in research on mechanical ventilation and artificial lung surfactant that is now standard practice in the NICU.

Now babies born at 500 grams or as young as 23 weeks are able to survive. I've met women who have healthy babies who weighed no more than 380 grams at birth - that's 12.6 ounces! It certainly isn't the norm but there is hope for babies born prematurely to live fulfilling lives and continue to push the boundaries of medicine.

Last but not least, we are walking for those friends of ours on this journey this past eight months who didn't make it home. For the nameless family that sat behind a curtain as we cuddled James tight and they said goodbye, for all those families that we never knew if they made it out okay because PSL is too big and privacy is a concern. For Jordan, Jacob, Bennett, Caitlyn - babies that fought long and hard but are resting now. For their parents, whose grief and pain I cannot imagine but I hope will someday lessen.

We walk for Maisie and James.


Friday, March 1, 2013

124 days

James was in the NICU from June 26th to October 28, 2012 - 124 days.

Today marks 124 days of being home. I can't really believe it.

The NICU days seemed so long, so intense. At times, we felt that they would never end. We know we have it easy compared to some of our friends near and far, who are still in the NICU and/or still dealing with procedures, surgeries, unknowns. And we have two healthy babies in our arms, which we are so thankful for.

It was fitting that today when we came home, I opened our weekly mailing from Premera Blue Cross Blue Shield containing our Explanation of Benefits Statements or EOB's. Inside was the final statement from Premera and Presbyterian / St. Luke's in which we were cleared of all liability with regards to James's final NICU medical bill at PSL. Considering that we were capped out on our $2 million annual out of pocket maximum, I have been worried about the outcome. Thankfully, everything turned out quite well given the tenuous circumstances. Lots of thanks to go around!

PS : I gave up my weekly Venti Nonfat Vanilla Chai at Starbucks for the March for Babies. Did you?