Holden's Follow Up Appointment at Riley

Today we made a trip back down to Riley for Holden's follow up appointments with the plastics and feeding teams. They couldn't believe how big he is! 14.2 lbs. to be exact! At just 2 months old!  First, the doctor that performed his jaw distraction came in. He said Holden looks great and that we're right on schedule to have his distractors taken out at the end of August. Next, the feeding team came in. We talked about making some adjustments to his feeds. And then we also talked about the possibility of him having a G-tube put in when they do his distractor removal. I've been trying to avoid him getting a G-tube, hoping that he wouldn't have to have even an NG-tube for very much longer, but nearly everyone I've talked to (doctors, other parents that have dealt with G-tubes, etc.) has said that a G-tube would be so much better for him and for us. It's possible he could be off of the NG-tube before his palate surgery at 12 months, but he'd probably start to pull the tube out as he got older. Also, after his palate surgery, he won't be able to have anything by mouth for 6 weeks. So really, the G-tube makes so much more sense for a number of reasons. He'll only have a small scar from it and it will get all the tubes off his face, which I can tell definitely irritate him. The doctors were so understanding about my reservations with the G-tube and talked me through each one. I swear, the doctors there put me more at ease every time we talk to them. He really does have, in my opinion, the very best people working with him. We left the hospital feeling really good about where he's at with everything!

On our way home from the hospital, we made a stop at the Fashion Mall for a late lunch at the Cheesecake Factory (so touristy, I know, but I love that place!) and a quick stop at Nordstrom since their #nsale is in full effect! There are several items that I've been impatiently waiting for to be back in stock, so I had to check and see if any of them were in the store. One of the shirts I've been tracking was, so I guess that's better than nothing, right? I'm going to try to do a later post on all my fav items from the sale, once they're all in.

That's all for now! Happy hump day! xo

Aurora's Birthday Fun

Like most 7 year olds, Aurora doesn't just have a birthday. She has a birthweek and a birthmonth. Really, the whole year is one big countdown to her big day, but once July rolls around, it's a daily (sometimes hourly) run through of her list of demands for the main event. 

Unfortunately, Jose had to work on her birthday this year. Of course she was showered with "Happy Birthday!" text messages and phone calls, she got to play with her bestie, and my grandma came over to hang out with Holden so I could play a few games with her. And we couldn't let the day pass without some cake so, on his way home from work Thursday night, Jose stopped and got a little cake and we sang to her and ate at 10:00 at night. :)

When I asked Aurora what she wanted to do for her birthday - a big party like she had last year, or a small sleepover with her cousins and a few friends - she was all about the sleepover! A Monster High sleepover, to be exact. Not going to lie, I cringed a little lot at the Monster High part. I'm not really a fan of character-themed parties, but this strong-willed little lady wasn't backing down. So I did something I've never done before. I took her to Party City and we picked up all the Monster High-themed crap we could find. I believe it was walking out of the store that day that I realized I'd better start accepting the fact that any control I ever had with this girl - over her birthday parties, over her outfits, over any of that - was quickly fading away and would soon be non-existent. 

Saturday was the big day. We had pizza and cupcakes, and the girls played outside for most of the evening, before coming in and settling into their sleeping bags for movies and popcorn. Pretty low-key, but I'd say it was a success!

Of course two of our island lights went out shortly before guests arrived and we had no extra bulbs!

Huge thanks to Jose's sis and our neighbor, Payton, and her friend for staying the night with us to keep the little chickies in line, while we took care of Holden! 

Aurora is 84 Months Old!

Kidding, she's 7. Aurora is 7. 

And what an incredible 7 years it's been! 

New swing set calls for a photoshoot.

Aurora, you have no clue how much you amaze your daddy and me on a daily basis. From the second you were born, our lives and the lives of those around us have been filled with an unfathomable amount of joy. You're smart and sassy (but also very sweet). You're loving and caring and you can't stand to see others in pain. You're so creative and could do arts and crafts for days. You love dancing and singing and making up little dances and cheers with your bestie. You're so independent, it scares me sometimes. You take such good care of your little bro - talking to him to calm him down when he cries, knowing if he needs to be changed (which, according to you, is all the time). You love to feed him and hold him and he seems so content in your arms. We are so very proud of the little lady you're becoming. We love you to infinity and beyond, my sunshine girl! 

Holden is Two Months Old!

Well, Buddy. You sure have been quite the adventure so far. Your daddy, sissy, and I love you so much more than we ever thought we could love another human. You're just the sweetest little boy in the world. You're most content while being held. You love baths. You could stare at the ceiling fan in the living room, or any light fixture for that matter, for hours. So many people have commented on how alert you already are. You also love to study peoples' faces, just like your sissy used to do. Your dad and I can't seem to agree on your eye color. He says they're blue. I say they're brown, just like his.

We've been home for a little over two weeks now. You cried a lot the first week and a half or so, just as you had been in the hospital. Maybe it was colic? The doctor prescribed you some medicine for reflux, and that seems to have calmed you down these past few nights. Now you can pretty much sleep through the night, aside from waking up to eat. You're a little over 12 lbs. now, you little chunker, you. We took you to mommy's work last Thursday and everyone just loved you. You also didn't cry at all the entire time you were there, so you have them fooled into thinking you're an angel. Daddy and I think it might be because you had your tube off for a those few hours, in between having it changed. You've gotten pretty used to co-sleeping, so we're trying to ween you off of that. We put you down in your bassinet last night, after each feeding. You did pretty well, sleeping for about an hour and a half to two hours each time. We'll try again tonight, hoping you sleep a little longer between meals, and then your crib will be the next step. Your sissy didn't sleep in her crib until she was nine months old. What can I say? We just love to cuddle with our babies.

We go back down to Riley next week and then you get your little distractors taken out at the end of August. I'm just so amazed at how much you've been through in your short, little life so far. Measuring the time in terms of feedings and appointments, it seems like it's just flown by. But I'm trying to just soak it all in. Even these tough times, because I know it won't be like this for long.

We love you, Holdy Man!

Home Sweet Home

You guys. We're fiiiinally home!!! Today just so happens to be mine and Jose's fourth wedding anniversary and there is nowhere else we'd rather be celebrating than right here in the comfort of our own home with our family all together!

When we woke up this morning, we weren't sure if we'd be discharged today or not. We knew there were still a few studies Holden needed to do before we could leave. They were going to do his swallow study at 2 pm today, but they knew how anxious we were to be home, so they were able to move it up to 11:15 am. Unfortunately, he is still aspirating into his lungs a little bit, so he'll have to keep the feeding tube. He'll be able to do half his feeding thickened in a bottle and half through his tube. Okay, we were hoping not to have to deal with that at home, but we can do it. 

Then they came in and did his carseat study around 3 pm. We'd asked the nurse to do our discharge paperwork while Holden was doing his carseat study (a 3 hour study), so that we'd be all set to leave right when his study was finished (so long as he passed of course). We really were not messing around about trying to get home tonight! At around 5:45, about 30 minutes before his test was supposed to be finished, the doctor came in and said his test was done. He'd passed with flying colors, since he didn't desat once during his test!

Woohoooooo! We were free to go!!! We already had our three wagons of stuff packed up. We said peace out to this view...

...and we were on our way!

About three hours later (We had to stop at a McDonald's to feed Holden.), we pulled into our driveway to this sweet sign my dad and Aurora made and all our family awaiting our (Holden's) arrival. 

HOME. SWEET. HOME.

Wednesday, June 28th

Great news! When the doctors did their rounds this morning, we were told that Holden's sleep study went great and they had no concerns. One doctor actually said it was one of the best sleep studies they'd ever seen! This means his oxygen cannula comes off and we don't need to take him home on oxygen. Woohoo! Also, they did an ultrasound of his kidneys, since he's had high blood pressure the past few days and they said that everything came back good. You have no clue how much I needed to hear that.

Also, they moved us back up to the 8th floor today, which we were super excited about. The 8th floor is the floor our first room was on and we've kind of missed it ever since we moved. Our room in the PICU was slightly smaller and came with a few rules, but being in the NICU was rough. While we had so many amazing nurses there (& really in any room we've been in), the rules were pretty strict. There was no bathroom in our room, so we used a community bathroom/shower. We couldn't have any food in our room, so we had to go down to this lounge area to eat. We couldn't have more than 4 people total in our room (aside from Holden). Guests, including Aurora, had to be out by 7 pm each night. And we couldn't have anything touching the floor (like our bags, etc.). Also, our room was quite a bit smaller than the others, so we basically went down there with a bunch of crap and had to sift through and take most of it out to our car. First world problems, I know, but it just took some getting used to and we pretty much got in "trouble" for breaking one of the above rules each day that we were there. Such rebels, right? So, needless to say, we were pretty excited to be movin' on up!

The word on the street is that we could possibly, maaaybe go home tomorrow or Friday, so we're hopeful. Holden still needs to have one more swallow study to see if his swallowing has improved, which could mean he wouldn't need to go home with his feeding tube. He'll also have to have a car seat study before we can leave, too. 

Here's some pictures of Holden in his new digs...

Tuesday, June 27th

So today was weird. But in a good way, I guess. Holden has had a few rough nights and last night was no different. He cried, unconsolably, for most of the night with a few patches of sleep in between. At around 7:40 this morning, our nurse came in and said, "They just called and have an opening to do his sleep study, but they want us down there, like, now." So we hurried around and went down to the sleep study area. We were pretty nervous the whole way down, as the first sleep study was pretty terrible. The guy who was going to be doing the study was very nice and calming and Holden slept the whole time the guy was putting the probes on his head and wrapping him up. This alone put us at ease, since he was basically screaming the whole time they were hooking him up for his first sleep study.

We were a little surprised when he asked us where we'd be during the study, as the last time we were told we needed to stay in the room. We told him we planned on staying and he looked confused. He said, "Oh no, we take care of everything down here for you. Usually this is a chance for the parents to go out and take a little break. Go get some lunch or something." We decided to take him up on his offer and Jose and I went and got breakfast and then went and walked down by the canal close to Riley. It was such a beautiful day and, knowing our baby was in good hands, we enjoyed spending some time just the two of us.

As always, we were glad to get back to our little man and they told us that he did great and slept through most of his sleep study and that we should know the results by tomorrow.