Such a little cutie...

Lovelace NICU reunion

Every year, Lovelace Hospital throws a big NICU reunion party for all the babies who have ever stayed in their NICU. So far we have gone each year, but as Eden gets older, it is definitely becoming much more fun. She enjoyed picking out lots of toys and prizes, and Brad and I enjoyed the food and reconnecting with some of the doctors and nurses who did so much for us. We look forward to next year when Eden may even want her face painted, or to join in on the cake-walk. :)

Palm Springs, California

This post is particularly late in being published (this vacation was back in mid-October), but it seems like I'm really struggling to keep the blog updated these days! Better late than never I guess.

This year for the summer sales contest, Brad's extremely hard work paid off and we were able to take a wonderful vacation at the Ranchos Las Palmas resort in Palm Springs, California. Eden was able to come with us this time, which always makes a vacation much different than traveling kid-free, but we had such a fun time being together as a family.



Across the street from the resort were some restaurants and shopping, and we ventured over there a few times, but for the most part we just hung out by the pool, took naps, and enjoyed doing pretty much nothing. Even Eden really enjoyed taking books and toys out by the pool and would be entertained for hours.





In one part of the resort they had a lazy river that circled around the kid's splash toys, and assuring me that there's no way she would fall in or get her trach wet, Brad took Eden for a ride a few times. It's not that she didn't enjoy it, but she also didn't seem too into either so I decided it wasn't worth the risk and keeping her on dry ground was less anxiety producing. :)


On one of the mornings, Brad did have to spend a couple hours in a business meeting, so Eden and I passed some time having a photo shoot.




Overall it was a very relaxing vacation, and was so nice to spend uninterrupted time together as a family. Thank you Brad for all your hard work that sends us on these fun adventures!

Eden Medical Update

This past week Eden and I traveled back up to Denver for an aerodigestive clinic appointment, and a bronchoscopy with her ENT. Everything in the operating room went smoothly this time, thank goodness. The pulmonologist and the ENT were both in the OR this time to do different scopes to check both below the trach and into the lungs, and above the trach where the reconstruction was done.

The pulmonologist said that below Eden's trach, where the trachea branches into the two lungs, there is a little bit of malasia, which is basically a little bit of collapse of those areas when Eden cries hard, or is really congested. Because this is happening in an area below the trach, this has nothing to do with her dependence on the trach though and won't be a factor to consider when discussing removing the trach. It's just important to know because it contributes to her fluctuation with dependence on oxygen, and her inability to get over sicknesses very quickly. Over time, as Eden gets bigger and stronger, and her lungs continue to get stronger, this malasia will also continue to get better.

As for the airway news, this is the first time her ENT has seen her airway since the stint was taken out in September. Overall it was good news, and though it's not ideal, her doctor is definitely happy with the way her airway looked and the way things are going. He said the airway is a little smaller than when he removed the stint, and there is an area that had some hard scar tissue, but overall he thought it looked great, and it's definitely much bigger than it was before he did the surgery. At this point her airway is definitely still smaller than that of an average 2 year old, and it's still too small to remove the trach, but she is no longer 100% trach dependent and can now breath a little around her trach. So at this point we just need to give her time now for that airway to grow.

Also, one other problem that will take time to fix is that the airway above the reconstruction site and around the vocal cords is very soft and squishy basically because it just hasn't been used, and hasn't really had any air passing through it for the first 2+ years of her life. Over the next handful of months it will be really important for us to use the speaking valve as much as possible to block of her exhalation from the trach so that her air is forced up through the vocal cords and through the upper airway to begin to strengthen that area.

Unless she begins to struggle with wearing the speaking valve, or any other weird things start to happen with her airway, her ENT doesn't plan to do another bronch until spring. This is all working out so great as far as I'm concerned. Not having the stress of needing to travel, while dealing with a high risk pregnancy is definitely a burden lifted from my shoulders. Now we just have to do our best to keep her healthy, and over time we will see the growth she needs to get that trach out. We hope it might happen next year, but we shall see!

It's a Boy!

We're having a boy and I am so excited! Technically, I guess I'm 18 weeks along now, but we took this picture last Tuesday after we had the ultrasound that confirmed my suspicions that our baby is a boy.


Obviously, I've always just said that I hope for a healthy baby, it didn't matter to me one way or the other if it was a boy or girl. I think the practical side of me wanted a girl just because we already have tons of clothes and girl stuff, and then Eden having a little sister close would be fun for them to share a room, and play together, etc. The thought of having a boy just seems so weird. I have no idea how to handle boys and frankly, it intimidates me! However, since finding out that we have a boy coming, I have become more and more excited every day and am so happy that we are beginning this new adventure.

Because our path with Eden has been so difficult and completely out of the ordinary, I feel that with this baby I will experience so many "firsts" that I didn't get with Eden. The fact that this is a boy makes this even more fun and unknown. Fortunately, I've got lots of nephews so I'm sure my sisters and sisters-in-law will be hearing lots from me as I'm trying to figure out what to do with a boy! :)

Our boy trouble for the next few months will be figuring out a name. Girl names seem so much easier to me so finding a boy name we both like, that isn't already in use as a first or middle name by any of our 19 nephews is going to be quite a challenge. Here we go!!!

Tinker Bell Costume

For Halloween this year Eden dressed up as Tinkerbell. She is WAY into tinker bell right now and when she saw this costume she just fell in love. When I picked it up off the rack, she hugged it and just kept signing "thank you" over and over again. How could I resist? :)

We took Eden to the ward Trunk-or-Treat party and she got into the whole candy collecting process pretty quickly. Despite our practice before we left with signing "candy, thank you" she got really shy once we were actually at the trunk-or-treat so she would just hold up her bucket, get the candy, and then walk away while I was the one saying thank you! :) She seemed to be pretty excited about it though. Now if only we could have been lucky enough to actually get her to try to eat any of it... (that's probably not something you hear most parents say!). In this picture she is practicing her "candy" sign.


On Halloween night we had some friends over for dessert and to hang out while we passed out candy to all the neighborhood kids. Eden loved being the helper with giving the candy, but we had to start rationing because she was giving big handfuls to each kid and we started running out quickly! She definitely wasn't a fan of the crazy masks though and wouldn't come near the door when a costume looked too questionable.

Overall it was a very fun Halloween and I look forward to her getting more and more excited about holidays each year!