Wednesday, January 30, 2013

Photo session with Kelly Lemon

A few weeks ago we had the opportunity to take family photos with Kelly Lemon Vizcaino, sister of our primary nurse J in the NICU. Kelly and her husband live in Ghana and she just happened to be visiting for a few days and was able to fit us in her packed schedule. Kelly is an amazing photographer whose gift and grace is so apparent. We were so lucky to work with her.

We first met Kelly back on September 18th. Maisie had been home for one day and James had just gone in for his reanastomosis surgery. Kelly and her husband Agustin came by the NICU to see nurse J and were able to meet both Maisie and James. They've both overcome challenges of their own accord and seemed to embody the strength, will, and determination it takes to make it through adversity. When choosing a photographer I could think of no one better.

Fast forward to January 2013, and both babies are home and thriving. Maisie is growling, rolling, and picking fights with everything she can get her hands on. James is quietly contemplating life, giggling, thoroughly enjoying the piano play mat, and eating so much solid food that we can barely keep up with him. They are simply amazing.

Here are a few of the photos from our session. Enjoy! And if you'd like to see more of Kelly Lemon Photography, you can go to her website or to Kelly Lemon Photography on Facebook.

P.S. Wish us luck: Apria is coming tomorrow to drop off the equipment for the overnight pulse ox test. Lets hope the little dragons pass or we will be in big trouble!











Saturday, January 26, 2013

Seven months old

Time flies! I can't believe these little dragons are seven months old already. They are growing and changing so fast.

We are all mostly recovered from the flu though James got a minor case of pink eye from the Tamiflu. It's already going away and otherwise he seems fine.

They've been doing great on the O Challenge. Currently they are at eight hours off oxygen during the day and have been doing fantastic. The little dragons love being off their O's and throw fits when we put them back on. Often times overnight I'll go check on them and they will have pulled their cannulas out, so hopefully this upcoming week we will do the overnight test with Apria.

On the food front the little dragons have been eating very well. James definitely lives for solid foods and has been downing two plus baby bullet servings a day. He is a growing boy who seems to be desperate to catch up with his sister. Maisie is not as interested in the solid foods but she does what she can. Her macroglossia or enlarged tongue still is an issue but we are learning to get around it.

From a development standpoint Maisie is about a month ahead of James. She's standing with help, nearly sitting without support, and she has great tone during tummy time. James has a couple of strikes against him, primarily being a boy (they tend to do things at a slower pace) and his prematurity issues (acquired hydrocephalus due to IVH, several abdominal surgeries, and finally lots of swaddling in the NICU to prevent him from extubating himself). The uphill battle doesn't seem to stop James as he is standing longer and longer these days, sitting well with help, and working on his core strength and flexibility through therapies and exercises. Nonetheless, the babies are advanced for their four month adjusted age and on target for some of their actual age markers. So, perfect for preemies!

For fun, here's what the babies are most interested in right now. There are two videos. One is Maisie growling (she is definitely a little dragon - no doubt about it!), and the other is James trying to devour his froggy. Enjoy!



Wednesday, January 23, 2013

No matter what we do...

We still get exposed to the flu. Bummer.

I, mommy dragon, have a confirmed case of Influenza A. Now everyone, including grandma, Jimmy and the little dragons are on Tamiflu.

Jimmy predicted it and so I took the first available appointment, just to be on the safe side. I work with at-risk populations at home and on the job, so it's crucial that I keep contagion in check. The doctor didn't even believe I could have the flu... however, the test came back positive and we are all in quarantine mode.

Thankfully I had my flu shot so what I got wasn't really that bad. Overall it was more inconvenient trying to stay away from the babies for the whole weekend while still trying to help out and provide for them. They are doing well and we don't believe they've got the flu. Jimmy did a great job managing when I was under the weather.

And I have to give kudos to Dr Jim, who time and time again proves to be an amazing pediatrician and neonatologist who takes our family seriously. I've resigned myself to the fact that if something's going to happen, it will happen to us- so we have to be prepared.

***
The O Challenge continues... we walked around the block today to get out of the house and take advantage of the weather that was supposed to be much nicer than it actually was. The babies were very concerned and curious, as they don't ever get to see the sky. So far we've made it to six hours off of O's without a hitch and will continue the challenge while we are on the mend.

Monday, January 21, 2013

We're happy campers!

We love this O Challenge!

Look at our photos below- can you tell what's different? Maisie was busy blowing bubbles with her cannula so we set her free during yesterday's O Challenge. The little dragons are making progress. We aren't sure how far they'll go, but so far so good.

While the babies are in challenge mode we are going to ask for help with our upcoming event. We know April seems really far away, but we need to raise $626 for the March for Babies. So far we've only had one donation - thanks Madame Lipowitz!

We also need team members to walk with us and help raise money. So far it's just Mommy dragon, little dragons, and grandma dragon! Come join us, it will be a blast!

Team LittleDragons @ March for Babies Denver

***
In other news, I've managed to avoid the rough upper respiratory bug going around at work. That is, until this past weekend. It doesn't seem to be too severe for me but I can't take chances with the babies. So, we decided to make the move from basinettes to crib this weekend to better protect them from whatever I have.

We also wanted to make this move before they start realizing that we aren't in the same room. Luckily, the room transition went flawlessly and they seem to enjoy their cribs and the space they have to move around. We've found the babies in way different places and positions than we've left them the past few nights, that's for sure. We are still using their Snuza monitors and have added a Philips Avent DECT audio monitor that is amazing and makes it sound like the little dragons are right beside us.





Friday, January 18, 2013

Checking in with Dr Jim

The little dragons had their six month check up today. Because Dr Jim is so busy, we are a little closer to seven months but that's okay.

The babies went in with an agenda: to get rid of their oxygen. They had been chewing on their cannulas, blowing bubbles, and doing everything possible to prove that they don't need their O's. In the room air test, the babies stayed saturated in the 90's for over an hour without oxygen and Dr Jim was very proud of them.

We have plans to try weaning them off the next few days and then we may try an overnight pulse ox test with Apria next week if things go well. So, we will be without our baby anchors next week? Our expectations are minimal, but to us it means the babies are making solid progress respiratory wise. That's great news for two 27 weekers, especially one who was ventilated for 13 weeks and wasn't supposed to have lungs.

Otherwise, things are going well. Dr Jim would like to see the babies grow more but they are on the curve and still not on any kind of percentile for their actual age.

Maisie: 11lbs 4oz, 22.5 inches long
James: 10lbs 2oz, 22 inches long

For being three months adjusted / six months actual they are doing awesome and above expectations. In preemie land, babies have two ages: actual and adjusted (when they were born and when they should have been born). Subsequently it makes tracking milestones and other things a little difficult but the little dragons are ahead in some areas or at actual age, and behind in others - but still ahead of adjusted age. Therefore, development wise they are doing better than three month olds.

***
Just for fun, here are some comparison photos of the little dragons at 4, 5, and 6 months.





Monday, January 14, 2013

Mark your calendars

It's official! We are doing the 2013 March for Babies supporting the March of Dimes. Hopefully April 27th will be a nice day because I would love for the little dragons to be able to walk with us in City Park.

If you'd like to donate to our team or walk, please go here.

Our goal is to raise $626, which is the little dragons' birthday.

***
In other news, the babies are all about smiling and growling. Can you guess who's doing what? It's quite entertaining.



*Sorry, I wish google/blogger would let this iPhone video be seen from your phones. But I guess you'll just have to get on a computer - it will be worth it, I promise!

Thursday, January 10, 2013

Return of the Banshee

Maisie has found her tongue and is doing two things simultaneously: trying to pull it out of her mouth and screaming loud enough for Jimmy to hear her at band practice.

Luckily James is so patient and calm; he's just giggling and kicking and enjoying eating his puréed nanners.

***
The little dragons are learning new things every minute. They are so incredibly fun and entertaining right now. It's unpredictable and very enjoyable to be around them. Here's a bit of an update on their favorite things.

Maisie: her Lambie, winkel, tag blanket and Violet toys, standing up, talking, screaming, the Christmas tree, her Mohawk, nanners, the boppy, being upside down, punk, metal & celtic music, sleeping, Daddy, kicking off socks, throwing up, and playing with James.

James: his Puppy, Jingle, winkel, and Scout toys, his snuggly, laughing and talking, smile breaks, eating anything off a spoon - especially sweet potatoes, the piano play mat, the Christmas tree, classical, guitar & celtic music, hanging upside down, Roll & Dive Bomb, sitting, kicking off socks, getting up early, bath time, and playing with Maisie.





Sunday, January 6, 2013

Toy-splosion

It's inevitable. The holidays are over and at some point we will have to address the mountain of toys under the Christmas Tree, or the toy-splosion as I lovingly call it. We'll also have to take down the Christmas tree which will be sad because the little dragons love looking at the lights.

We are so fortunate to have loving friends and family in our lives who were so generous and gave these babies the most wonderful Christmas. They'll be enjoying it for quite some time. For the moment, nothing is more fun than their hands (and each other's hands), pulling off O's (oxygen), and using their sibling's O's as leverage to pull themselves around and upside down.

***
This week we were busy towards the end of the week. Thursday we took family photos with our friend Kelly Lemon Vizcaino, who is the sister of our primary nurse J in the NICU. She and her husband met the babies back when James had his reanastomosis surgery and were about to head off to Ghana for a two year work commitment. Kelly is an amazing photographer and we can't wait to see the results of the photo shoot. We only with nurse J could have been here to see it!

Saturday we did our monthly Synagis shots and they went pretty well. Because it was so cold out, we dressed the little dragons in their adorable new hats - a Christmas gift from Auntie Ca and family in Washington. They loved them. The shots - not so much. The babies did get weighed and they are:

Maisie- 10lbs 11oz
James- 9lbs 10oz

James is on track for gestational age, but Maisie hasn't gained as much weight as we would like. She loves to talk and giggle and stand up with help, and we think that she's just too distracted sometimes. So, this girl will be eating a lot of avocado in the next few weeks so we don't get on Dr Jim's naughty list!



Tuesday, January 1, 2013

Goodbye, 2012!

The little dragons are ringing in the new year in style in their fleece footie pajamas. We don't really do the resolution thing around here - just ask my parents about resolving to get my own Safeway or King Soopers card and they'll tell you it worked out really well last year. I can make excuses all day as to why it still hasn't happened but the main thing is, we were pretty busy.

We are determined, however, and it's what keeps us moving forward. Here's what we are determined to do in 2013:

1. Stay healthy all around. This is a tough flu season with record hospitalizations in our state. We don't want to add to that tally. Additionally, we want our loved ones to stay healthy as well and do what they need to in order to maintain their health.

2. Give back. We had a lot of love and support this last year and will do whatever we can to return the favor. I'm starting out tomorrow by donating blood to the PSL blood bank that helped our little dragons so much this past year. They rely on donations and are not affiliated with the other major blood banks in the area except to buy supply when they are low. Preemie babies are some of the main recipients. Additionally, we will look for ways to pay it forward, whether it be helping other families going through the NICU or pProm, or other projects to be determined.

3. Maintain balance. We spent 2012 on the point of a knife. It was the most exhausting, monumental, suspenseful, joyous, emotional, heart wrenching year we've had. We don't quite know what normal is like yet. Luckily a few things are in place: the babies are sleeping 12 hours and are eating well, we both have great jobs that are super flexible and understanding, and we have amazing families that help care for the babies. We are working to maintain our lives in a good balance so we don't lose our sanity, and so we can truly appreciate every thing we have and the opportunities we've been given.

It's crazy how much can change in just one year. From our family to yours, have a healthy and prosperous 2013.
~Erin, Jimmy, Maisie and James.