Thankful Friday?

Since we didn't post a Thankful Thursday blog yesterday I wanted to make sure to get one up today. It actually felt kind of weird not putting one up with all that we have to be thankful for. I invite you to share what your thankful for in the comment section below or leave a link to your Thankful Thursday post!

Mandi's List:

I'm thankful that we got to see our little peanut this week, and that it's healthy, with a heart beat and growing to at the right pace. It's crazy how much you can love and appreciate something only 9mm long!!

I'm thankful Ronnie got out of the hospital and is feeling good. His PFTs aren't quite where we want them, but now it's just a matter of getting to work. I'm SO thankful we've gotten out and gotten right into our workout and healthy eating routine. It'll get his PFTs up and hopefully keep my weight down ;-)

I'm thankful that my only real "craving" lately is oranges. It could be much worse - with a sweet tooth like mine, who knows how much ice cream and snickers I could down (mmm caramel), but oranges I can handle! Who knows if it's a true pregnancy craving, but man, oranges have never tasted so good.

Ronnie's List:

I'm thankful to be out of the Hole. Don't get me wrong, I appreciate the Hole for what it does for me and my lungs, but I'm never sad when it comes to saying goodbye. Sure we bring our own blankets, pillows, towels, microwave and coffee pot, but it can never feel just like home, a home that I happen to love.

I'm thankful for the great news from our first ultrasound! We were told that the little peanut is right on track in development and, although it's early, everything seems to be on the up and up. It's always a bit nerve wracking heading into those things and the fact that we left with nothing but positive news is something to be very thankful for.

I'm thankful for March. March is a time for many things that I love. Awesome weather. March Madness. Grandma's birthday. Mark's birthday. Wildcat basketball. And I'm sure a host of other things that just isn't coming to mind right now. I have long held that belief that March is my favorite month ever and I'm happy to report that that belief still stands.

So the question is, what are you thankful for today?

Rondi's Recipes: Spicy Orange Chicken

We thought we'd get off on the right foot first night out of the Hole and do a little home cooked meal. Today is supposed to be Thankful Thursday, but let me just say this, I was VERY thankful that we made this and I was able to eat at my own dinner table. If you want to see the original recipe, please click here.

Also, super duper happy 81st birthday to the best grandma in the whole wide world!!!!!! Love ya G'ma :)

Spicy Orange Chicken

• Ingredients: oranges, cooking oil, baby spinach, soy sauce, honey, fresh ginger, cornstarch, crushed red pepper flakes, skinless boneless chicken breasts, salt, ground black pepper, garlic

Fresh squeezed orange juice

Baby Spinach

Cooked Baby Spinach

Marinade

Sliced chicken breast

Chicken breast cooking in garlic and marinade

Cooked chicken breast served over orange slices and spinach

Serve and...

...ENJOY!!!

Prep Time: About 20 minutes (with two people)

Cook Time: About 25 minutes

Total Time: About 45 minutes (The recipe says total time should be around 30 minutes so apparently we need to work on our methods of operation)

What we liked:

I like how light it felt. It just simply felt "healthy". No heavy sauces and it doesn't leave you feeling overly full. It's a perfect summer meal.

I liked the cooked spinach. I'm usually not a huge spinach fan, but it was great.

I loved the warm oranges! (But then again, the last few weeks I've LOVED oranges!!)

I liked the overall flavor

This is kind of a cheap one, but I liked that it had chicken. I love chicken breast in just about any meal, any place and any time, so the fact that this recipe featured it, was an immediate winner.

I loved how fresh, clean and light this meal looked and tasted. The crispness of the orange mixed with the light sauce and fluffy spinach just made this one of my favorite "texture" meals.

Speaking of light, I loved that this meal didn't sit heavy in my stomach.

I LOVE fresh cooked spinach and the fact that this had chicken and oranges sitting on top of a big bed of it made my day.

What we'd change:

I would marinate the chicken overnight in the sauce, minus the corn starch (but with orange juice, soy sauce, ginger, honey, crushed red pepper)

I would cook the spinach less and with garlic.

I would cook the chicken with more garlic - there can never be enough garlic.

I'll always choose dark meat over white, but Ronnie will only eat white. So if I had it totally my way, I would change the chicken to dark meat :)

Although I loved the clean taste of this meal, it was almost "too clean" meaning it lacked a little bit of flavor. Next time I'd like to add more of the marinade and find a way to make it thicker ie more sauce like.

I would think about marinating the chicken in said sauce hours before hand.

I would try it with oranges less cooked just to try a different texture in the dish.

I would try to add a little bit more heat to the meal (which would happen if we increased the red pepper flakes or maybe we could marinate in some Korean Pepper Paste?)

Here's our overall rating (with 1 being the worst meal we've ever had and 10 being the best):

Mandi's Rating:

9 - I'd say it was a 8 this time around, but if we made the changes, it would easily be a 9.

Ronnie's Rating: 8.5

Again, if you guys have any suggestions on how this is laid out or what you guys would like to see answered/done differently, please let us know :)

The Transition: Adult Pulmonary Team

So first I'll start with a little bit of a hospital update. It looks like I'll be taking PFTs today just to get an idea of where I'm at as I'll probably be leaving regardless of the result. Now of course if they are a lot lower or I wake up feeling terrible than there may be a change in plans, but at this point I feel a lot better than when I came in. My lungs are a lot more open and I feel like I'm going to be able to start kicking booty in the real world. My whole goal for coming into the hospital is to get stabilized to the point that I feel comfortable with taking care of myself at my house by doing treatments and exercising. I think I'm to that point now but of course would like increased PFTs to feel really good about this stay. So we'll see how it goes and I'll be sure to let you guys know.

What I really wanted to talk about was how my transition has been to the adult pulmonary team. This was my first experience with them as they just started rounding on adult patients in November. I'm not exactly sure all the ins and outs of why the transition came to be, but I'll give you guys my best guess based on what I've heard. Basically, our pediatric team was being overworked and were getting to the point where the number of adults served at the hospital was equaling the amount of kids that were served. We obviously want to put our doctors in the best position to succeed as well as our patients and this didn't always allow that to happen. Having overworked doctors not only impacts them negatively but it obviously impacts the care that the patient will receive. Then when you add on to it someone of an adult age that has adult problems other than CF you start to open up all new cans of worms that the pediatric team isn't qualified to handle (I would of course make the case that my pediatric doctors are more than competent to handle any issue that I've ever brought to them, but I understand an outsiders-looking-in perspective that adult patients should have doctors that specialize in adult needs).

I also heard that there was pressure coming down from the CFF as this clinic is one of the many supported by them. The CFF is doing their best to ensure that all clinics have an adult CF team that can easily be transitioned to at the appropriate time. Like I said above, I understand the reason behind it, but that doesn't necessarily make transition easy on either the doctors or the patients. Often times our best intentions have unintended consequences and we as patients can suffer the most. I've spoken to some of my friends about this and I know that I'm not the only one that feels this way. But before you think this is some type of "hit piece" on my new adult CF team, please let me assure you that this is not the intention of this blog. I'm simply sharing my experience so far just in case anyone out there can relate to it or is about to transition themselves.

One thing I want to point out is that I've been transitioned to an adult pulmonary team and not a CF specific adult pulmonary team. Many of the new doctors, of which I think I have met eight of them so far, have little or no experience in the cystic fibrosis world. I can understand their hesitation in taking on nearly 75 new patients or so. They certainly want to do the best job they can and when you're going into a new field feeling almost blindfolded, I can see that as being a very daunting task. I'm sure that some of the doctors on this adult pulmonary team almost felt "forced" to learn about or take on an issue that they weren't particularly interested in. So I want to make it clear that I truly do understand where they are coming from as well. Also, I want to make it clear that I understand how else this could have worked out. If this new adult pulmonary team didn't agree to take on new patients we would've been what some refer to as “up crap creek without a paddle”. I very much appreciate them not deciding to simply kick us to the curb and tell us to find a new hospital. I know for a fact that was an option and I'm very thankful that they chose to take us on.

Now onto what I think of the transition thus far...

This transition has definitely made me feel more like a patient. Since this new team isn't all that familiar with CF they must rely on their experience with other CF patients to kind of figure out what I'm going through. As we all know, this is a big mistake when it comes to the CF community. We are all so different and we all present various phenotypes at different times. It's a real dangerous practice to lump us all into one group and treat us all the same. In their defense, most of them have been very willing to listen to me and address some of my concerns on being treated like they would treat any other CF patient. After a lengthy conversation with one of the head doctors about me not agreeing with a “two-week limit” on receiving antibiotics in the hospital he seemed to really understand where I was coming from. His experience and his research may point to patients not getting much better after two weeks but the bottom line for me is I've gotten better after two weeks, many times in here. Sometimes it only takes two, sometimes three, sometimes four, heck, it's even taken five weeks before. That conversation was all about getting the point across that I didn't want to just be another patient, another statistic, another note in his chart. After our conversation I think he definitely felt more at ease with me and left by saying “well then, let's get you over this hump”. It was one of the first times that I felt like they were treating me like one of many, rather than many of one.

The transition has also been a little tough because I came in not knowing what to expect. All doctors, whether peds or adult, have their own method and ways of doing things. The new doctors keep a very different schedule and I can't really count on them coming at a specific times or specific days like I could with the old team. They're not as quick to respond to requests or pages or calls, but I do really feel like most of them try their best. I know they have a lot of other stuff going on and I have a feeling the more they get to know me and other CF patients the more responsive they will become. They'll start to understand that some of us don't want to be here and are willing to work hard to get out of this place. They'll also understand very quickly that they're going to see many of us repeatedly. We're not like the patients they are treating in the ICU who have acute illnesses who they “fix” and then send on their way. It should be the goal of both the CF doctor and the CF patient to establish a solid rapport and relationship. That's the biggest difference between the work they're used to doing and the work that they've been forced to do now. I think the sooner they understand that and truly buy into it, the easier this transition will become for both parties.

This blog is getting a little long so I'll just leave it at this- a kind of overall synopsis if you will. The transition has been what I expected, some awkwardness, some hesitation, new personalities and an opportunity to really voice my opinion on some issues. I think it could've been a lot worse, and honestly, I wasn't expecting better. There seems to be some doctors who really care and some doctors who want nothing more than to listen to my lungs, write a note in my chart and get out of my room. I'll identify the doctors that care and start to form relationships with them. I'll also identify the doctors that don't care and ask them to find a new line of work. If I'm not going to fight for myself nobody else will.

Like I've told every new doctor that I've met this stay “I want you to be my teammate, not my doctor, and I promise that nobody will work harder for me than me”.

Blueberry with a Beat

It's a bird...it's a plane...nope, it's a BLUEBERRY with a heartbeat. 7 weeks pregnant today, our little peanut is about the size of a blueberry. We had our first ultrasound yesterday afternoon, and man was it an incredible experience. As soon as the nurse got into "position" we could see our little peanut (yes, I did say peanut, singular) all cozy in my tummy. It took another moment for the nurse to get it into focus and then, incredibly, we could see the flicker of the little peanut's heartbeat. It was unbelievable! I don't know if I fully took it in because I just sat there ecstatic that there was something in there and that it had a heartbeat. But I was completely in awe that God has placed something to tiny in my belly, and has created it in a way that it can already have a heartbeat. Completely mind-blowing. I wasn't ready to stop looking at my little bean when the nurse moved onto my ovaries, but I figured she'd give us another chance to see our baby before it was all said and done.

So then it was onto my other baby-makin' parts. My ovaries look pretty good. They aren't too, too big, but they are covered in cysts (which I understand to actually just be the follicles filled up with fluid). The cysts are quite large, and to be honest, a bit alarming, but the nurse said it was nothing to be concerned about and that they'd resolve on their own (I guess the fluid just gets reabsorbed). She did say that it actually can be good for the pregnancy, though, because they "help support the pregnancy" by producing hormones. She didn't seem at all alarmed, so I'm not letting my mind wander. She did take measurements of many of the larger cysts and I assume they'll be monitoring them over the next few ultrasounds.

I am excited to share that our little 'nut is measuring exactly as it should (exactly 6 weeks 6 days, which we were yesterday) and the heartbeat was "perfect" at 169 - that little heart was flickering like mad!

We will have another ultrasound next Monday, and all will continue to cruise along as it is now (hopefully). I did find out that I should hold off running (I think in part because of the cysts), so it'll just be walking and the elliptical for me until after 8 weeks. I will be on the Progesterone until who knows when. I thought that I'd be done next Tuesday (based on what I was originally told) but it sounds like it may be longer than that (but who knows, I didn't ask questions, I was too excited about my 'nut).

Below are our first two pictures of our baby!!

First Tummy Shots

Welp, as many of you can tell, we're still in the hole, but we're thinking Ronnie will likely get out Tuesday or Wednesday. They decided (upon Ronnie's request) to do a 5-day Prednisone burst, so he'll be on Prednisone for 5 days and then taper off (likely at home). Hopefully we get out soon, because between my hormonal craziness and Ronnie on Prednisone, we just might end up killing one another before we spring him. Kidding...it hasn't been that bad (the combo that is...my hormonal craziness has, in fact, been that bad).

Which brings me to my next update. We have our first ultrasound at 3pm today. We couldn't be more excited. We will find out if there is in fact a baby growing in there, and see if it's one or two! I have a hunch it's one, but maybe we'll be surprised and it will be two! I am both excited and nervous! I don't care if it's one or two, as long as there's at least one!! Still no morning sickness. My tummy feels a little out of wack if I'm very hungry or very full, but other than that, nada. I have been pretty sleepy - I even took a nap on Saturday and Sunday for an hour or so each. But I've had the energy to get some run-walks in (more walking than running), so that is good. The most unattractive of my pregnancy symptoms seems to be coming on in full force. My face is more broken out than when I went through puberty and I have more hair on my tummy? Yeah, oh so attractive, I was debating keeping those things to myself, but I've promised the facts, so there you have them - the good, the bad, and the really ugly. Now, a bit of a disclaimer, I've googled "hair on tummy" and some people talk about long, dark, coarse hair - luckily, that is not what I'm dealing with. But my blonde peach fuzz does seem to be darker than I ever remember it. Although, it may not be helped by how sunless I am (pale skin, and my hair is always darker in the winter) and the fact that I only look at it under the yellow, florescent lights of the hospital room. Perhaps I should check it out in the light of day, maybe it's all in my head? As for the pizza face, I don't think the lighting or lack of sun can explain it away. It's pretty bad. I'm just hopeful that getting off these Progesterone injections may help clear it up a bit (but I'm not holding my breath).

As promised, here are some belly pics. You'll notice it's really just a lot of bloating, and my bloating in my tummy is finally going away. (I think It may be defying gravity and going straight to my chest - I now almost fill an A-cup...look out, I may move out of my training bra at some point! ha!) Also, I will include my weight (although I think that may become brutal! I've put the average for the week, as my weight fluctuates by a few pounds from day to day, I think it's due to all the water I'm retaining.)

Before the egg retrieval - my pre-pregnancy belly

Weight: 105 lbs

A few days after egg retrieval (I wasn't kidding about the bloating)

Weight 108 lbs

4 weeks pregnant

Weight: 107 lbs

5 weeks pregnant

Weight: 108 lbs

6 weeks pregnant

Weight: 108 lbs

In looking at these photos, my tummy looks like it's getting bigger. But I assure you in person the bloating was worse in weeks 4 and 5 and now is less. These were all in the morning, and the bloating is always the worst at night, so these just don't do it justice.