Riviera Maya, Mexico

Just looking at the last two posts, I think it's clear that I definitely needed an escape so this little get away to Mexico couldn't have come at a better time for me!

For Brad's summer sales contest this year, he reached all his goals and got us this all expense paid trip to an amazing, all inclusive resort in Rivera Maya, Mexico.

Before diving into all the fun pictures, here's a huge shout out to my amazingly talented, and hard working husband! He loves what he does for a living, and he does it well. I'm so grateful for the provider that he is, and for all the fun perks of his career!

My mother graciously agreed to take care of Eden for us while we went, but because Bentley is nursing, he got to go. Vacations are always different when you have a baby, but he was SO GOOD! It was a nice, relaxing trip and because we had a baby, it forced us to just take it easy and take lots of naps when he did. :) I was definitely ready to get back home to Eden by the time it was done though. She is so much fun, and I missed her so much!

The first day was a little rough. We got to the airport at 4 am for a flight that was supposed to leave at 5:30 am. Because of mechanical delays and then an eventual cancellation of the flight, we didn't actually end up leaving the Albuquerque airport until about 3pm that afternoon. Unfortunately, we missed our connection flight, and all other flights leaving to Mexico that day so we ended up having to spend the night in Houston. We were supposed to arrive in Mexico at 11am on Thursday morning, but didn't actually make it there until about noon on Friday morning. It made for some long days in the airport, but Bentley was an amazing baby and just slept in the stroller and hung out.

When we got to Mexico, the travel agent had arranged for a car to pick us up from the airport and take us to the resort. Brad had let them know we would need a car seat so I thought it was really funny that when we got to the car, they had the right kind of car seat, but it was actually put in the car wrong and was facing forward. We got a good laugh out of it... Bentley looked a little confused about how they do things down there in Mexico.

The resort was amazing! We have been to a lot of places and this place was so different than anywhere we have stayed before. The architecture and decor was so ornate and extravagant. Everything was so beautiful! They had tons of swimming pools, a wave pool, a lazy river, all inclusive food and drinks, and we were right on the beach as well. And on the other side of the resort from the beach was a shopping center. We definitely had no reason to ever leave the resort.

Bentley loved the buffets and never ending food just as much as we did.

There were some strange animals there that we had never seen before. Apparently they are called Coatis and are in the raccoon family. Despite the signs that said "don't feed the animals" Brad would take them some food everyday and they were not at all shy about grabbing it right from his hands. At one point, one actually started climbing up his leg! I happened to catch that little encounter on video... I screamed, Bentley cried, and Brad laughed. It was crazy!

In the mornings we would go have breakfast and then spend a few hours out by the pool. Bentley absolutely loved the water (just like his daddy!). We would spend a couple hours out swimming, and then Bentley would nap on the lounge chair next to me as I read.

We would also go on a lot of walks to explore the huge resort. We would get so many comments about him everywhere we would go. He was pretty adorable though sitting up in his stroller.

By the afternoon, he was ready for a good nap in his bed. He was a trooper though and would wait patiently for us to get back to the room. I have the best baby in the world.

We spent a lot of time swinging on this hammock chair out on our balcony each day.

On the bus ride back to the airport, Bentley was getting tired and he started snuggling with Brad's shirt. He loves to have some kind of blanket or fabric when he goes to sleep, so I guess he found what worked!

Overall it was such an amazing trip! I loved the time away from normal life to relax and recharge. Bentley was such a good baby, it was hardly like he was there at all, so I got some good quality time with Brad too. :)

Thank you Brad for working so hard and spoiling me with these amazing vacations!

Eden - Medical Update

Aside from talking about the feeding issues, it's been a while since I've done a medical update so here's all that we've been up to (medically) lately.

Hydrocephalus/Papilledema
Since the brain shunt was removed this past January, Eden has been on a medication to try to keep the pressure in her head down, so the swelling of her optic nerves would go down. For the first couple months, it seemed like it wasn't quite doing enough. The swelling of her optic nerves hadn't gotten worse, but it also wasn't getting better. They decided to increase that medication, as well as put her on a steroid for 30 days because sometimes the combination of the two makes a big difference. Well, the 30 days on the steroid was a little rough (roid rage!) but, it worked! The swelling went down and has sustained for a couple months so now the Docs are slowly starting to reduce the first medication. She will have another eye exam at the end of October to make sure that while decreasing the dose, the swelling still stays down.

Ears
Since the NICU Eden has had annual hearing screens (because it's common for preemies to have hearing issues). It seems like there has always been some weird results for her right ear, but there was always a good reason to explain it away (ear tubes blocked, intracranial pressure, etc). In June she had her annual hearing test, and again, the results for her right ear were not good. She was showing moderate hearing loss in the middle ear. This time, there wasn't a good excuse as to why. She had just gotten her ear tubes replaced the month before, and her intracranial pressure was low because of the medications she was on. We went in to see the ENT doc here who wanted to do another hearing screen to just verify that it was a good test, and the second screen came back the same as the first. The audiologist is concerned that with this level of hearing loss, it can impact Eden's speech and articulation because she isn't hearing a lot of the normal frequencies for specific levels of the alphabet.

The next step was to get a good look inside Eden's ear to see if there was any obvious anatomical problems that may be causing the hearing loss. In order to reduce the number of times she goes under anesthesia, we just waited until we were in Denver when she would already be under anesthesia for her bronchoscopy. The ENT there couldn't see anything wrong with her ear, and there was no fluid build up. He went ahead and replaced the ear tubes again while he was already in there so that would take away the question of faulty tubes.

At this point we are all still a little confused with why those two hearing screens came back with poor results. It's interesting though that in the last few weeks, before the ENT in Denver even saw Eden's ears, she has been more sensitive to sounds. Out of no where, she started covering her ears when I vacuum, or when she flushes the toilet, or at a football game the announcer guy was so upsetting to her because she said he was too loud. I have no idea if her hearing really is ok or not. The plan is to do a third hearing screen in a couple weeks and if the results come back bad again, then she will have to go back under anesthesia for a CT scan to see the bones in her ears, and the ENT will look down under her eardrum. We hope it doesn't come to that.

Swallowing
While we were in Denver, Eden had another swallow study so they could see if she swallows safely, and if there is something she is doing that is impacting her desire to NOT eat. She cooperated so great which was such a huge blessing and we were able to get a very accurate and consistent look at how she does it. The good news, she did great with all the bites of food she had. The bad news, she did horribly with liquid and was aspirating (liquid going down to her lungs instead of down her esophagus). So this means that we have been given strict orders to thicken all her liquids with this weird gel stuff, and she also has to drink it only out of a sippy cup so it helps control the amount she takes into her mouth. She hates it and says her water is slimy, so since we have been instructed to thicken her liquids, she pretty much stopped drinking all together. Awesome.

Airway
At her bronchoscopy in Denver on Oct. 4th we got more bad news... her airway hasn't really grown since he checked it last May. This was definitely a blow... I was surprised. I feel like she has grown and gained more weight so fast this year compared to previous years, but apparently not much is happening in her airway where we need her to grow the most! We were hoping for the trach to come out next spring, but that's definitely not happening. We are in for the long run still. Her ENT wants to give her more time, lots of time. We need this airway to grow on it's own so we don't have to do a second reconstructive surgery. That would be horrible, and her body didn't handle it well the first time so we don't want to go through that again for multiple reasons. I hate to "waste" years of waiting though if we just have to do another surgery in the end anyway, but I guess jumping into a second horrible surgery when it could have possibly been avoided is a worse choice. So we continue on with life as usual with our trach. We are in for the long haul.

Therapies
When Eden turned 3 she was forced to "graduate" from the early intervention program through the state and was recommended for continued speech therapy services through the public school system. We were happy to say goodbye to the long list of other therapies we had (occupational, developmental, and physical), but we were sad to say goodbye to Geneen Martinez, the speech therapist that's been working with Eden since before she turned 1. We love her, and Eden always got so excited when she would come. Now we see a new speech therapist at a local elementary school. She's good too, but she's not Geneen.

Since the swallow study, the team is also working to get Eden a second speech therapist who will just work on swallowing and oral coordination stuff. I hope we can get this one so we can hopefully help Eden coordinate her liquids and swallowing better so she doesn't have to drink slimy water out of a sippy cup for the foreseeable future. That might be awkward when she starts dating. :)

hmmmm.... what else am I missing? It seems like there's more, or perhaps I'm just feeling warn out and stretched a little thin....

Isn't it crazy that being born 13 weeks early can lead to years of intense intervention? It still leaves me shaking my head in dismay. Though she is so much less maintenance than she used to be, our lives still revolve around her medical needs and appointments. For almost three years, Eden was my only child and her care was my "normal", I didn't know any different. I used to want lots of kids, but after having Eden I didn't understand how people can physically and mentally care for a big family. I understood that Eden's medical needs were a lot of work, but I thought all kids were high maintenance just in different ways.

Having Bentley has been a real eye opener for me in both good ways and bad. Having a healthy baby has reminded me not to take things for granted. Having a healthy baby has helped me appreciate the huge blessings we have seen in our lives. Having a healthy baby, I now see with a new perspective and understand how people have lots of kids... it's pretty easy and straight forward when their bodies just naturally do what they are supposed to do. For a healthy baby, you provide the necessities like food and hygiene, and their body naturally does the rest. It's quite amazing actually. I marvel at how naturally things happen with Bentley, like breathing, eating, physical strength, making noise, etc. The human body is truly an amazing thing when it functions as it was designed to. We also only have appointments for him every few months so it's amazing how flexible and "free" life is with a healthy one!

Having a healthy baby though has made me realize how much work it is to have a baby with medical struggles. Having a healthy baby reminds me that Eden's start to life has been totally and completely unfair for her. There's not a lot that has come easy for Eden. It's no wonder she has such a strong and stubborn personality. She has had to fight for where she's at now and it has not been easy in the least.

With all that said though, I find comfort and peace knowing that before coming down to this Earth, Eden probably agreed to this start in life. Someday when I'm reunited with our Heavenly Father I'll have lots of questions as to the "whys," but for now I just have to have faith that this was the plan for us and that He hasn't left me, or especially Eden, alone throughout all these ups and downs. No matter what the answers are to the "whys," we are experiencing it so I might as well try to learn and grow from it all.

I'm grateful for Eden and the immense love I feel for her. There's a connection with her built through a lot of tears, pain, frustrations and miracles that I don't think I'll ever feel with another person. I love her with a depth that I can't even describe. Man she's a lot of work, but she's worth every single bit of it.

Intensive Feeding Therapy

Intensive feeding therapy.... I have so much to say about this, the good, bad and the ugly. I'll just start with the organization of it all and then get into my feelings about it later.

Every day for two weeks we had an appointment at 9am and at noon, one with a speech therapist and one with an occupational therapist. During these appointments, we would have a meal with Eden and they would teach me different techniques and introduction styles to try to get Eden to eat and experiment with new textures. The goal was always to focus less on the number of bites she takes, and more on just having a positive interaction with her food so that over time she would begin to enjoy eating.

Each meal we would give her the choice of a "preferred" food, along with one or two other news things. She would get to choose the order of the food she wanted, but we only focused on one food at a time. Rather than push her to take a bite, we would have to give her other safe options, but still interactions with her mouth like licking it, or tapping it on her teeth, or kissing it. All the while, making sure we were just having an overall positive experience.

In the beginning she was pretty cooperative and would do what the therapists asked her to do (licking the food, taking bites, etc.) but once she started to get a little more comfortable with them, they began to see the incredibly stubborn personality that rears it's ugly head! She tries every technique in the world to try to gain control over the situation, and she knows that this is something she can choose not to do, despite our theatrics to convince her that it's a good idea.

To make an incredibly hard and frustrating situation even worse... we had little brother joining us in these sessions, and while we were doing everything we could think of to persuade Eden to eat, Bentley on the other hand, was screaming and clawing his way to eat all the food. Additionally, because my sister lives too far from the hospital, we were just staying there in between sessions so Bentley never got a good morning nap, so by the afternoon session he was grouchy and a huge distraction. It made things interesting for sure.

For the two hours in between sessions, it was hard to find fun things to do to keep Eden happy, and hopefully get Bentley a little cat nap. We took walks outside around the hospital, played in a little toy room, and read books. There's a little library in the hospital, so we spent a lot of time in there, but even that got old pretty quickly. The kids really liked the bean bag chairs though and sometimes gave me a little break too.

By the end of week one, I was feeling incredibly discouraged and frustrated by it all. Brad came out for the weekend, and I was a horrible, grouchy mess the whole time he was there (sorry Brad!). For three years now I have struggled over countless hours upon hours to get Eden to eat, but I always knew that eventually we would get to the intensive therapy and I would finally get consistent and experienced help in an intensive setting to really kick start her eating and help her overcome so many of her aversions. I had unrealistically high expectations though that it was going to work miracles. I went into the therapy with the goal of only needing the feeding tube at night for extra calories, but it was evident to me early on that I was way off. We left there only reducing her formula g-tube feeds by two ounces a day (she gets a total of 32 ounces a day), hardly a change at all. Given her medical history and the intense ups and downs we have dealt with, I definitely know better than to get my hopes up so high only to have them crushed with disappointment, so I'm not sure why I let myself go there with this. But I did.... and it hurts.

Out of everything we have experienced with Eden, this eating stuff has by far been the most difficult and frustrating. The longer she goes without eating, the worse it will get too so I constantly have this pressure that I need to be trying harder, or doing something better to make this work now. I can't imagine it getting harder, and I'm exhausted by it all already so I just want to fix it now! I hate that she struggles with it and therefore chooses to not even try. I hate that I'm trying so hard, and she just continues to push back against me. I hate that I feel so much anger and frustration towards her sometimes when we have a particularly rough mealtime interaction. At the table, things need to stay positive so she has a good experience, so I keep all these negative emotions inside and the frustration is boiling over into unrelated parts of my life. I hate that I have less patience overall, and I hate that I vent and take it out on Brad. So many times I just want to give up and walk away.... but I can't... that's not what mom's do because if I gave up, who would help her?

So many people have said to me, "just don't give her that milk. Eventually she will get hungry enough and she will eat." If only it were that simple. Kids who are g-tube fed from infancy never learn the patterns of hunger and satiation. They never learn to recognize what feeling hungry really is, and associating that feeling with putting something to their mouth. Her mind doesn't understand that what she is feeling is a need for food, so starving her will never be the motivation to get her to eat. I've skipped Eden's g-tube feeds before, and she doesn't ever eat. Starving her won't work. We just have to learn to teach her the patterns of feeling hungry, eating and then feeling satisfied. How do you teach that to a stubborn three year old though? She struggles with swallowing, so she chooses to not even try.

By the end of the two week therapy, she had made some progress with at least interacting with foods that I have never gotten her to even touch before. She wasn't doing much actual eating though. And unfortunately, since we have been home, it's only gotten worse. Spending two weeks there though was definitely worth it because it at least established consistency, and a routine that I continue to follow. At each meal, she comes to the table, we have our positive interaction with the food, she gets her g-tube feed, and then she leaves the table feeling full. I've also started to relieve myself of the intense pressure I've felt to get her to eat. I'm doing my best, and I'm having to let go a little so I don't get so incredibly frustrated. Hopefully over time, the actual eating itself will improve, but we have to start somewhere and we have to smile while doing it.

Bentley - 6 months old!

I just can't believe this adorable little guy is already six months old! I can't seem to cherish the moments enough. Time is really flying by!

6 month stats:
16.45 pounds - 22%
26.38 inches - 37%
17.75 inch head circumference - 77%

Though still a little wobbly at times, Bentley is sitting up pretty good these days. He's also rolling around so he can't be trusted anywhere but on the floor!

He's really great at helping me wake Eden up from her naps.

He LOVES the water. Bath times are always a treat for him, and if I'm ever holding him while trying to wash dishes or do anything in the sink, he basically jumps out of my arms to get in.

He is still so quick to smile and we get tons of comments everywhere we go about how happy and cute he is. At the park I walked away from him in the swing for a second to push Eden on the other swing, and he was immediately surrounded by some girls we don't know. He loved the attention, but I kept having to slow them down a bit because they were getting a little carried away with their pushing. :)

He sleeps solid for a good 9 or 10 hours each night. He is also a great napper so I'm definitely getting good sleep these days which makes everyone around here a little happier. He has the most precious face when he is sleeping.

There are so many things I love about this little man, but one of the highest on my list is that he LOVES to eat! It's so awesome that he will eat anything and everything that I give him. It's amazing. In fact, most times I can't give him food fast enough because he is whining for another bite before I even get the spoon back to the food and ready again. I LOVE it!

Having a child eat though is definitely a messy experience. Eden's clothes always stayed perfectly clean because she didn't eat. I'm lucky if Bentley only goes through a couple shirts a day. It's weird to have food stains on clothes and to go through bibs faster than I can wash them. I've decided just stripping him down to the diaper is the best way to go, and then I can just hose him off when we are done. :)

It's been such an amazing 6 months with this little guy in our home. He has such a happy and easygoing personality which has helped level out a lot of the pressure and anxiety I've been dealing with over the last few months. I'm so grateful for the perspective he has given me, and how he has helped me remember to not take things for granted.

Bentley, I love you so much and can't imagine my world without you in it! Happy 6 months!

Our Denver stay - the fun stuff

We were in Denver for just under three weeks for Eden's intensive feeding therapy, a swallow study, and a bronchoscopy for her airway. The results of those things is a huge post of it's own, but first let's take a look at all the fun stuff we were able to do while we were there....

We got to attend the celebrations for Jade's 8th birthday and attend her baptism which was so awesome!

One of the biggest perks was definitely some good quality cousin play time. It took a few days for her to get comfortable with leaving my side, but before long Eden realized it was so fun to have her cousins around to play with.

Bentley mastered the art of sitting on his own while we were there. He also just continued being his adorable, happy self.

On our drive out to Denver, we stopped to get gas and stretch our legs. Unfortunately, Eden fell off the curb while dancing and got a big scratch right under her nose. Priority number one upon arrival was getting a bandaid on it pronto. It didn't take long though before she decided that was super annoying (just as I tried to convince her it would be).

We also went to the Denver Children's Museum with Tiff and her kids, and my cousin Allie and her son Bryant. The museum was awesome and Eden still talks about going back there again.

And aside from these fun things, we were also able to hang out with Greg and Steph and their family, and lots of my cousins and extended family as well. We are fortunate to have so much family in that area. In another post I'll get into the details of all the not-so-fun things we did while we were there. Overall it was a great trip though and I can't thank the Asay family enough for letting us stay there for such a long time! I'm so grateful to have supportive family to help us out during these crazy times! What a blessing!