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.

Monday, June 26th

While I love Riley and all that they've done for us and our little man so far,... I'm so ready to blow this popsicle stand. It's been the biggest emotional roller coaster and, just when I start to think we're in the clear, something else comes along. Holden's recovery from surgery has gone really well (minus the failed extubation, obviously). His breathing has been great since his second extubation, feedings have been great, he's been super alert... Everything's been going so well these past few days that Jose and I may have gotten a little ahead of ourselves in thinking these next couple of days would be the last of this trip.

The doctors did their usual rounds this morning and, while they didn't exactly deliver any bad news, there are a few more things they need to do before we leave and it's now looking like we'll be here for another week. The Plastics doctor said he should be done turning Holden's distracters on Thursday, but that if we get discharged before then by the speech team, that we'd be able to finish the turning ourselves, at home. This got us excited because he did so well drinking from a bottle last Friday and through the weekend that we were expecting the speech team to do a swallow study either today or tomorrow and then we'd possibly be discharged after that. However, when his NICU team doctors came in they said the swallow study likely wouldn't be until after he's been fully distracted, which would be Friday at the earliest. Let down #1. There was also hope that we'd eventually get moved to another floor (one with less rules and it's own bathroom), but they don't see the need to do that unless they need his bed for a new patient. Let down #2. But then they also mentioned doing an ultrasound on his kidneys, as his blood pressure's been a little high, so that put this mama's mind into full worry mode, once again.

I can take the being stuck here longer than expected, but when there's a possibility that something else could be wrong with our little man, the anxiety and worry take over and I'm sick to my stomach until we're back in the clear again. So, continued prayers are appreciated my friends.

Sunday, June 25th

On Sunday, both my family and Jose's left to go back home, along with Aurora. It would be just Jose and I with Holden for the remainder of our trip at Riley's. Before they left, they all got their last snuggles in with Holden, including Aurora. You guys. Aurora is seriously the best big sister ever. She was definitely a little skeptical at first, once she saw how much attention was quickly diverted to her little bro when he came along. And I know the whole hospital visit hasn't exactly set well with her either, but she's so good about calming him down when he's crying and she absolutely loves holding him. This is exactly what I'd hoped it would be like when a new baby finally came into our lives.

Our Third Week at Riley

Sunday was Father's Day, so we spent the day celebrating Jose. Because, well, if there's anyone that deserved it, it's him. We also got to hold our little guy again!

The above is a picture of one of the distractors Holden had put in on both sides of his jaw. Three times a day, someone came in to turn them. To do this, they took a little screwdriver and attached it to the end of the distractor and turned it for two full turns for the first week, and then one full turn the second week. The whole process honestly sounds so awful to me, which is why I had such a hard time when we first met with the doctors and they'd tell us what would be done. But I have to say, his breathing has improved so much, he can finally lay on his back, and we're actually able to see his little tongue now. If you look at pictures of him from before his surgery and compare them to this, you can see how much his jaw has come forward. By the end of his turning, his jaw will actually be over-corrected a bit, but he'll have grown into it around his first year.

Not much happened on Monday during the day, but I did put together these two picture collages to show how insanely identical Holden looks to Aurora, when she was a baby! Yeah, I know... they both look exactly like Jose. Monday evening, Jose's mom and sis stayed with Holden while Jose and I took Aurora downtown for some dinner and a little visit to the mall.

Tuesday was bittersweet. Holden was supposed to be extubated in the afternoon. So when the doctors mentioned possibly doing it around mid-morning, we were so excited. We just couldn't wait to hold our little guy without a bunch of tubes attached to him. However, when extubation time came, the RT (Respiration Therapist) was a little concerned about his leak percentage (the amount of leakage in his airway, around his breathing tube). He said it should've been higher (over 20%), as the lower percentage (around 10%, on average) indicates a smaller airway. Apparently the size of breathing tube he had in is what they normally use on premies, so the fact that his leakage was so low, even with a smaller tube, was a concern. They said all of his other numbers looked great and his lungs were perfect, so the airway was the only issue. Unfortunately, they couldn't really tell how wide it was without going in and removing the tube. And, knowing in advance that his airway might pose a problem, they wanted to do it in the OR rather than in our room since the OR is better equipped in case they have to take another route. And an ENT (Ear, Nose, and Throat doctor) would be doing it rather than the RT. The ENT that would be doing it is the same ENT who tried to do his supraglottoplasty during his surgery, so he was already familiar with what his airway looked like. So they put off his extubation until Wednesday. While I was super sad we didn't get to hold him tubeless on Tuesday night, I was happy to take the cautionary route to get things done for him. Knowing that the RT had reservations about doing his extubation while they were still discussing doing it, I was definitely relieved when they suggested putting it off for an ENT to do in the OR.

 We did get to give him a lollipop (sponge dipped in breastmilk), though!

Poor little guy had to have another IV put in, since the ones he had from his surgery went bad. This one was for his steroid for his extubation.

Alas, Wednesday came and Holden was finally going to be extubated! We took him down to the OR just before 9 am and came back up and waited. They said it would probably take an hour, as they wanted to observe him for a little bit. We were pretty surprised when they brought him up 30 minutes later. They said he did great! However, after about five minutes of being up in our room, he started making a heavier breathing noise that they said he wasn't making down in the OR, so they were a little concerned. The doctors stayed around for a bit longer to observe him more, but he ended up doing just fine!

 Getting ready to leave for his extubation!

...In transport to the OR.

Back from extubation! Doctor's checking him out to make sure he's breathing okay.

One tube down, two to go! (Oxygen and feeding)

I'm tired as hell in this pic, but... my baby's off his breathing tube!!!

The rest of the week was pretty relaxing, for the most part. They wanted to keep an eye on his breathing, he still had about a week to go with turning his distractors (Although, the plastics team said if the feeding team discharged him, we could finish turning his distractors at home.), and they wanted to see what could be done in terms of getting him off his feeding tube. On Friday afternoon, they watched him eat 20 MLs and he sucked it down within a minute. So the plan, at this point, was to follow up after the weekend and see how he handled drinking 10 MLs by bottle at each feeding, with the rest given by feeding tube. Seeing how quickly he drank the 20 MLs, we were pretty hopeful. 

On Saturday, Jose's mom and sister stayed with Holden while Jose and I went out for a bit to one of the malls. Also, my mom, dad, brother and grandma came back down for a bit as well.

Here's some more pictures of us getting our fill of Holden snuggles. :) :) :)

When my parents came down, they had a gift for us from our amazing neighbors, who were already taking good care of our pup back home - a bunch of our favorite treats and an awesome t-shirt for me that is sooo fitting right now! (I'll share a pic once I actually get dressed and have my hair done in the same day.) 

It Could Be Worse

When people would ask me, even as recently as a month ago, what my plans for my maternity leave were, my answer was always something like, "Oh, I can’t wait to just be with my babies all summer! ...Sitting outside and soaking up the sunshine, going to the zoo and the beach, and just really savoring my time with them!" That was it – lazy summer with the kiddos. What my plans did not include were a series of doctor appointments, which would ultimately lead to a 3-4 week stay at Riley Children’s Hospital with my less-than-one-month-old. My plans did not include missing out on some of my daughter's "special" moments because of said doctor appointments and hospital visit. I guess sometimes, no matter how much we plan or how much we think we have our ducks in a row, God just has something else in mind. While it’s not always easy, we just have to roll with it, knowing that there’s something to take away from the situation and that it’s all part of a much bigger picture. The hardest part is trying to figure out just what I’m supposed to take away from all this. Why on Earth would God do this to my sweet little boy? While I don’t know the answer to that question at this time, being at this hospital has shown me that it could be worse. It could be way worse. Holden’s issues are treatable. His first year will probably be the hardest, but he should have a fairly normal life after all this. My heart breaks for all the families whose children will have their conditions their whole lives… for the children whose conditions will end up costing them their lives. I fall apart each time my sweet boy has to go back for another test. Yet I know the amount of tests and surgeries he’ll have to undergo are minimal compared to what other parents and children are going through. The past few weeks have been the worst weeks of my life. I've been pretty depressed and my mind has been in a totally negative place. And then today, while eating lunch in the NICU lounge, Jose and I met a girl. She told us about how she's been here since January - JANUARY. Her baby girl was 1 pound when she was born and has issues with both her brain and her intestines. She has to have a trach put in and will likely have it her entire life. As this girl was sitting there telling us all of this - in a completely optimistic tone, I might add - I felt sick to my stomach. Sick for her for having to go through all that. But then also so guilty. Here I've been so down and out over something that Holden will eventually outgrow. He will have a chance at a normal life once all this is over. I so believe that God put his young girl in front of me today as a reminder to count my blessings. Because it could be worse. It could be way worse. 

Our Second Week at Riley

My parents had to drive back home on Sunday. My mom had to work the following day and there was no way she was able to get out of work. This was particularly hard on her because everyone else was going to be able to come back on Tuesday for Holden's surgery and I know there is no place she would have rather been than down here with us.

On Monday, the ophthalmologist came and checked Holden's eyes. To do this, they put some type of tool on his eyes that props his eyelids open. All while he's laying there screaming. Thankfully he passed this exam and his eyes are fine. Aurora was able to spend some more time at the Child Life Zone, so she was a happy camper. And my dad and grandma were able to come back down for Holden's surgery.

Tuesday was the big day. Surgery day. We left our room around 7 am to get Holden down to the OR by 7:45. We all waited impatiently in the lobby. After about an hour, Jose and I were called back to meet with the ENT doctor who was supposed to do a supraglottoplasty to shave back a "little flappy thing" in Holden's throat that was possibly causing issues with his breathing and swallowing. He wasn't able to do it, due to Holden's airway being too small, but he said if the procedure was still needed after the mandibular advancement surgery, it could be done at a later date. After we finished talking with him, we went back to the lobby. Around 10:30, we were called back to meet with the plastic surgeon who'd performed his mandibular advancement surgery and he told us everything went great. He said Holden was in recovery and told us what room they'd be taking him up to in the PICU. Once we got up to his room, I walked in and saw his sweet little body lying in a tiny baby crib with all sorts of tubes and cords attached to him. He was intubated so, even though he was breathing, he wasn't moving at all. Seeing him that way was one of the worst parts of our stay at Riley and will be engraved in my mind forever but, at the same time, I was so relieved that his surgery was finally over with.

Moving down to the PICU was a bit of an adjustment for us. We were in a smaller room, for one. Our first room was huge and had a separate little area where I could pump and we had an air mattress set up for when Aurora stayed with us. The bathroom in the PICU room was quite a bit smaller as well. Also, Aurora wasn't allowed to stay in this room. She had to be out be 9 pm each night. Luckily, we got a room at the Ronald McDonald house the week before, so Jose's mom and sister would take Aurora and stay there.

Since we knew Holden would be intubated for a few days following his surgery, Jose and I each planned to spend a day alone with Aurora doing something fun. On Wednesday, Jose took Aurora to see Wonder Woman and then they went and walked around the mall.

On Thursday, Aurora and I were up bright and early and headed to the Indianapolis Zoo, which is about 5 minutes from Riley. She was super excited to go because we'd been researching the animals they have there the day before and found out they have a walrus named Aurora. Unfortunately, Aurora (the walrus) is shy, so we only got to see her from the back. But there was another really friendly walrus that we got to see up close. This actually turned out to be one of my favorite zoos!

After the zoo, we went back to the hospital to get some food. One of the ladies that was cleaning our room told us the day before that Thursdays were Food Truck Thursdays, so we headed down to check it out. We got some yummy loaded bistro fries and the most delicious strawberry shortcake I've ever had! I've been craving one ever since.

After we ate, Aurora and I headed to the mall to do some Father's Day/BFF birthday shopping. It was such a fun day and I loved spending the day with my sweet girl. We were both glad to get back to Jose and Holden. Holden was finally opening his eyes! It was few and far between at this point, but it was one step closer to him being awake.

Friday morning, all our dreams came true and we got to hold our little guy. After his surgery, I wanted nothing more than to scoop him up and hug him. Not being able to do that for three straight days really sucked. To hold him, two nurses had to come in and move him into our arms, making sure none of his cords came undone. It was a pain, but it was SO worth it!

Friday afternoon we were moved to the NICU, as they needed our room in the PICU and Holden's condition was stable. In the PICU, they mentioned that Holden would likely be extubated on Saturday morning. They initially said Friday afternoon was a possibility, but they wanted to wait until Saturday morning to be safe. So we were surprised when, after just a few hours in the NICU, they decided to extubate him. While I was so excited, I was also pretty nervous that they wanted to do it so soon. From a respiratory standpoint all of his numbers looked great, so they went ahead with it. Unfortunately, Holden failed his first extubation. After about 20 minutes, they decided he wasn't breathing well on his own and they reintubated him. They sent us out into the family lounge while they put his breathing tube back in. Of course I did the one thing you should never do in this situation and I Googled how long you have to wait to extubate after a failed extubation and one of the first things I read was something about failed extubations being associated with a high mortality rate. I was so sick to my stomach and of course I started balling. After what seemed like forever, the doctor came out and said that Holden had been reintubated and discussed the possibility of using a steroid for the next extubation. He said that Holden's airway, while getting bigger with his jaw extractions, was still pretty small and that's likely why he still wasn't able to breathe well on his own.

Saturday marked one month since this sweet boy came into our lives! While it's been a crazy month, our lives are so much better with him in it and I'm so thankful God gave him to us.