Saturday, September 27, 2014

IVF Update: Day 3 Update

Just a quick one to update on the progress...

But before I do, I'll start by saying that we can't thank you enough for all the prayers. They are really felt, and it is so evident that God's hand is all over this process!

Our embryologist, Drew, called yesterday afternoon with our day 3 update. Right now we are sitting at 14 that are 6-8 cell embryos like he likes to see on day 3. The other 7 are sitting at 2-4 cells. This means 14 look really good, and 7 are behind (they could catch up, but likely won't). This is exactly what is expected on day 3, and we could not be more thrilled. It's actually the best we've looked on day 3...and Drew said this is the best he's seen from us at this stage in the game. Praise God!

Ronnie and I are both feeling good. Ronnie's little incident Wednesday night was nothing a little GoLytely couldn't cure, and he's back up to par after a long night and morning on the throne. I am feeling really good for what I usually feel on day 3. Still a little discomfort when I bend/move or have pressure on my stomach, but all of the constant sharp cramping is gone. I still look about 4 months pregnant, but hey, that's what yoga pants and baggy shirts are for, right?

As of now, we are game on for Sunday at 11am! Come on babies, mommy's tummy is ready for you!

Prayer Requests:
- Pray for embryos that they continue to do well and that we have a handful of good ones on day 5.
- Pray for my body to continue to heal, so I feel 100% in the next couple days
- Pray that my body is ready to have two babies implant and stick around
- Pray that the 2 embryos that will implant and hang around grow in a way that Drew (our embryologist) instantly knows they're the two he should pick to put back Sunday. Make it clear as day in his heart and mind.

Thanks again for all the prayers. It means the world to have your loving support and to know that our awesome God is hearing from so many on our behalf.

Friday, September 26, 2014

"I Lived" Because of Christine

I was very impressed (that would be an understatement) when I saw the new One Republic music video "I Lived" for the first time. It may be the best awareness video that has ever been put out in the cystic fibrosis community. It is rare to find an awareness piece that does such a great job in striking the perfect balance between education and inspiration. 

"I Lived" by One Republic

The music video below features real-life CFer Bryan Warnecke talking about what CF is, how it's treated, what his expectations are, his fears, his blessings and everything in between. What I took note of however, which may ultimately be most important for CF patients and their families, may not be what others noticed. Before I get into that, please watch the video below:  

Be Who You Want To See

So what struck me most about that video? His parents. I wish I could give them a hug and a high-five and say "job well done". They put their son in the best position to live out the title of the song. That video was much more about life than it was about CF. And when our parents allow us to live, in spite of CF, we can often look back and credit their approach for our successes as CFers.

Did you see how they raised Bryan? And in return, Bryan's attitude toward a life with CF?
"It's just one of those things that really makes you appreciate life. Makes you appreciate where you are as a person." - BW
That would not be his attitude if he was raised to fear a life with CF. If he was made to think that life gave him the short-end of the stick.

I do not know them personally, but I guarantee they modeled that mentality through action and words.

Judging by the clips, the last thing on their mind was that CF was a life-altering or life-shortening disease. Judging by those clips, they parented their son Bryan, and not the disease cystic fibrosis.

A Life In Spite of CF

So what did living life in spite of CF look like to them?
  • Falling into a pit of foam, in a public play place (eeeeeeek!!!) at 1:17
  • Riding a bike and falling over without a parents fear that their son is somehow "more fragile" at 1:47
  • Riding in a tractor down a dusty road (oh no!!!!!!) at 1:56
  • Water skiing in a lake (please make it stop!!!!) at 2:07 and 2:11 (with mom cheering in the background)
  • Tumbling over in an electric ATV then being "put back on the saddle" and encouraged to try again at 2:19
  • Boogie boarding in the ocean at 2:26
  • Jumping head first into a pool, maybe public (ahhhhhh!!!), at 2:35
  • Snow skiing at a presumably high altitude at 2:58
  • Back to the dusty tractor ride at 3:00
  • Playing hockey, which I assume means he's in a public locker room with his team at some point (I can't take it anymore!!!), at 3:24 

A Life Ruled by CF

Now, I didn't randomly pick those scenes out of thin air. I picked them because they are all things my mom would have prevented me from doing 34 years ago. When I was diagnosed with CF, my mom forgot that she had a son and instead only remembered that I had a disease.

Does that make her a bad mother? Absolutely not! She did the only thing she instinctually knew how to do as a mom - protect me. Her protection came in the form of shielding me from the outside world in fear that I would become "more sick".

If she would have continued parenting me like that, there is no doubt that I'd be dead.

My Life Changed

By the grace of God, at the age of 5 or so, my very imperfect mom with the very imperfect kid made the most perfect decision, to let me live. In fact, it was this quote by my doctor that started it all...
"If you continue doing what you are doing, not only will Ronnie be somewhat physically disabled his entire life, but he'll become mentally disabled as well...and that's far worse"
That's when my life changed.

She no longer parented the disease, she just started to parent Ronnie, her rambunctious son.

Mind you, this was still tough sledding for my mom. Not allowing the disease to make every decision for her didn't feel natural. There were many times where her heart and her head didn't agree. She had to practice parenting me apart from the disease. It was a decision that she chose to make every single day. That doesn't mean it was easy.

The fear was still there. The agony still hovered over her at times. The doubt crept into her mind from time to time. You know what though? She never let me see that. She would cry herself to sleep almost every night, something I didn't know until about 6 years ago. I never saw that.

After she popped the bubble she formed around me, the only mom I remember was the mom that told me to live, and live well. The mom who sacrificed her afternoons and weekends by having me in sports year round. The mom who made my health our families number one priority, while still be a fantastic mother to my two younger brothers. The mom who would come home physically and mentally exhausted from work, yet made sure to hand pound my chest, back and sides for 45 minutes like she had done before leaving for work in the morning. The mom who took a job that she was overqualified for, and not all that interested in, because it had the best medical insurance in the state. The mom who made me believe that if I put my health first, I was capable of anything. The mom who talked about when I would go to college/get married/make her a grandma, and never "if". The mom who made cystic fibrosis feel like such a small part of our lives, even though most of her energy went to managing it. The mom who raised a boy who was proud of having CF, because she made it clear that she was proud of me - the boy with brown hair, buck teeth, a loud voice, fast feet, quick wit, and oh yeah, cystic fibrosis.

I'm asked all of the time, "where does your attitude come from?". That's easy. My mom.

My Mom, The Perfect Mirror

My mom made me into the man I am today by using CF, and it's inevitable challenges, as another tool in her tool belt. She had me convinced that CF helped mold me into the boy that was the "apple of her eye". She always talked about what a blessing CF was to our family. She was quick to point out the opportunities that came along because of cystic fibrosis. She often reminded me of all of the great people I met and friends I had that would have never been a part of my life without CF.

I loved my life with CF, because my mom loved our life with CF.

Frankly, if she would have shown me that she hated CF, I would have thought that she hated me, too. If she would of shouted "CF sucks", I would have heard "our life sucks".

I never once got that feeling from my mom. I haven't heard her speak a bad word about CF to this day.

She perfectly modeled everything she wanted to see in her son and for that I am forever grateful. Like Bryan's parents, she made sure that a life with CF was a life full of living.

The only reason I'm able to write this blog 34 years after I was diagnosed with cystic fibrosis - with her granddaughter tucked safely in bed and my wife nestled up on the couch -  is because I had a mom who believed, from the bottom of her heart, that I would.

"I Lived" because of Christine. I love you mom.

Wednesday, September 24, 2014

IVF Update: Good Numbers, Lame Parents

I'm here and ready to update, but I'll keep it (semi) brief. Monday Ronnie had his aspiration. Monday night Ronnie rewarded himself with a feast from Long John Silvers. Welllll, that was a bad idea. Ronnie's body was so confused by that junk that he's been sick ever since. Monday night he was up "enjoying" his chicken planks and hush puppies a second time. And his stomach has continued to be really painful since. We aren't sure if it's related to the aspiration, the Long John Silvers, or something else coincidently happening at the same time. He's actually at the Emergency Room as I write this, to rule out that it's nothing else....because he's been really miserable. We are wondering if it's a partial bowel blockage, something with some organ in there, OR just the fact that he feels like he's being kicked in the boxers repeatedly. We will keep you posted, but my guess it's not cause for major concern.

Tuesday morning was my retrieval. The procedure was smooth and successful. They collected 40 eggs, 27 of which were mature. I felt pretty good yesterday aside from the typical cramping and discomfort that everyone gets after a retrieval. My stomach has continued to get more distended, but it's actually a lot better than it has been the last 3, and I don't have any other symptoms of OHSS (rapid weight gain, shortness of breath, low urine output, etc). So I'm pretty pleased. I think I would be feeling a little better than I am now if I was able to just sit in bed, but because Ronnie and I are quite the pathetic duo, I have been taking on most the duties for Mckenna. Poor Mckenna has been forced to watch more movies in the last day than she has in the last year, but I'm pretty sure we didn't kill too many brain cells yet! Our dear friend was sweet enough to take her for a couple hours this morning while we met with our foster care agency worker (not ideal timing, but we gotta do what we gotta do), so at least she got to play with friends then. And then tonight I took her to Chick-Fil-A while Ronnie was at the Emergency Room, so she could run off some energy while I sat and rested. But pretty much we have laid on the couch all day, getting up only to use the potty or feed ourselves or Mckenna, and napped when she's slept.

We got the much anticipated call from our clinic this evening that 21 of the 27 mature eggs fertilized normally. We are really excited about those numbers. Our prayer is that God provides us with exactly the number of embryos He wants us to have, so we are trusting that today he wants us to have 21. We will get another update Friday.

I started the oh-so-wonderful twice-a-day Progesterone injections this morning. Thankfully the first week of them are never too bad because the soreness doesn't start until there's some oil build up. They also have me on progesterone lozenges 3 times a day. Currently, I'm also on all the dailies they want me taking (about 7 supplements, I'll do a blog all on it's own of all my meds), and heparin and prednisone for recurrent miscarriages. One quick note about the prednisone...I don't think I'm having noticeable side effects from PRAISE JESUS.

We will keep you posted on how we are feeling tomorrow and what we find out about Ronnie's tummy troubles. I told him he can have a free pass on taking care of me while I recover from the retrieval as long as he's better by the transfer day, so I can lay low after it! Priorities!! Ha! 

Thanks so much for being in this with us and covering us in prayers. So far, God has provided all that we've asked for!!

UPDATE FROM RONNIE: So it ended up only being severe constipation. I was in so much pain because my colon was full of BM from the entrance to the exit. It was also very enflamed and rubbing up on my other internal organs. I was actually having issues taking deep breaths, which is ultimately what led me to the ER. All of my other labs looked good, so they released me with a script for GoLytely. I was up until 4am letting the drink work it's magic and it continues to do the job well into today. I'm feeling much better with minimal pain when compared to yesterday. Still feeling a little backed up, so I'll take it easy with mostly liquids.

Thank you for your thoughts, prayers and concerns!

Prayer Requests:
- Thank God for how well our procedures went, how good we are feeling relative to what we could be feeling, and the great numbers so far.
- Our 21 little lives as they grow and develop that God works with them according to His will.
- Continued recovery that is quick!
- God starts revealing to Drew (our embryologist) which embryos he should choose to put back on day 5. He checks them again Friday and Sunday...have God guide his eyes, mind and heart to the two that should be used!
- Mckenna feels content and is understanding as stuff looks different around the house and the routine  is different for the next few days.

Tuesday, September 23, 2014

IVF Update: Moving Right Along

Things are moving along swimmingly. Sunday night we did my trigger shot. Yesterday I had an ultrasound to double check that all looked good. My lining is perfect and my ovaries look about as full as can be!  I then had a blood draw to check my Estradiol levels. We got a call that they are in the 3000s, which is high, but similar to what they were with Mckenna, and lower than they were for the pregnancy we miscarried. I was nervous they'd be too high, but they are exactly where they'd expect for the number of follicles I have, so we are all systems a go.

Ronnie, poor guy, had his TESA last night (Monday). I think this one hurt a little more than the previous two, and unfortunately seems to continue to hurt more than the other two. But he, of course, is a champ...and currently devouring several pounds of Long John Silvers (his post-TESA reward after each one...he hasn't had it any other time in our married life! Ha!) Some ice, rest, and good food should have him back up to snuff in no time.

I go in today (Tuesday morning) for my retrieval. I am a little nervous, but mainly just excited. The recovery after our first retrieval wasn't awesome, but the second two weren't bad at all. So I'm hopeful that the recovery will be like the last two and not the first one. Time will tell, and whatever the recovery looks like is so well worth it in the long run!

After that, we get updates on day 1, 3 and 5 to hear how we are looking in terms of embryos. And as the plan stands now, the transfer will be Sunday, day 5.

Prayer Requests:
- They find great sperm from Ronnie's fresh sample and the frozen sample from his last one they are also using.
- Ronnie's recovery is quick, and he's back to the gym in the next couple days.
- My retrieval goes well, and they retrieval a ton of great quality eggs.
- My recovery is easy and smooth, with little to no signs of OHSS.
- God guides the embryologist's hands in creating the embryos.
- Great updates on Day 1, 3 and 5

Thank you so, so much for the prayers. Our God is awesome in power!

Monday, September 22, 2014

Circumstances That Bond

As I'm sure many of you saw, last week, FOX premiered a new show called Red Band Society. It's a show described by the network as, "provocative, unconventional and unique coming-of-age dramedy about a group of rule-bending friends and the adults who mentor them through the ups and downs of adolescence in Los Angeles' Ocean Park Hospital. Exploring everything from strong friendships and first loves, to humorous mishaps and heartbreaks, the series is a story of life, with an edgy comedic tone all its own." 

...And one of the characters has CF.

There has been mixed reviews about the show from people in the CF community (and I'm sure the other communities whose ailments are featured). I get the negative feedback. It's not totally realistic (come on, what TV shows are?!). 

Hospital rooms don't look like dorm rooms. That said, they could come close if you wanted them to. Ronnie has an entire snack table complete with a coffee maker and microwave; brings his own comforter, pillows and pillow cases, bath mat and towels; and usually brings a TV and game system. Patients maybe don't smoke pot in closets and have parties on the roof top. That said, Ronnie and I have date nights where we find hidden, secluded spots on the hospital grounds and have take out under the stars. We also "escape" and "sneak" over to the university campus to catch a glimpse at tailgaters, watch parts of football games, and eat lunch. And there may not be several inpatient friends to run wild with while in house (although in the old days they did), but the friendships depicted are based on something very real. It's a phenomenon that I think speaks to the beauty of mankind.

When you have something in common with someone, there's an immediate bond. I first noticed this when I lived in Asia as a tween. Surrounded by Asians, two caucasians always smile at each other. You know that that person is likely also an ex-pat; living abroad; in a foreign land. There's a familiarity, even though they could be nothing like you, and they are a total stranger. Fellow Christians, we do this all the time. As soon as we know someone else is a Christian, there's a common ground; an understanding. And when I started dating Ronnie and joined the CF community, I realized this is very much true in a "disease community"...especially in a rare disease community.

Fellow members of the CF community understand something about Ronnie and I that no one else can. You can watch a CF life from the outside, but you'll never grasp it like when you live it. Other friends or extended family can watch our life and know what it looks like. But they don't feel the same feelings. They've never had the same thoughts. They don't know the depths of our souls and the emotions that come with every day, and typical lifetime, decisions. That's the bond shown in the show. It's immediate. And very much real.

We have some dear friends, Mike and Sara...who we were blessed to spend yesterday with. Spending the day with them actually sparked this blog post. They are the type of friends we see a couple times a year, yet when we are together, we reveal parts of ourselves we don't share with others. We can sit down at a table and look up to realize it has been 6 hours. Mike and Sara understand parts of our life that other friends will never, ever grasp. Sara has CF. Sara and Ronnie understand each other in a way that I will never understand Ronnie. Mike and I understand each other in a way Ronnie will never understand me. We understand each other as a couple, and the dynamics that come along with being a CF couple, that will always make us "different" from other couples...yet eerily similar to each other. We are now all parents. We are raising children with CF parents. We understand decisions and possibilities in each others' lives that others don't even consider. Our kids, though they don't know it yet, will have a bond that will serve them well one day. They will understand each other in a way their peers will never get them. It's a powerful connection that we, as humans, desire, and need.

The show may not be accurate, but the principals it encourages me to embrace and remember, are awesome. First, to make the best of where we are in life. When Ronnie is inpatient, it is crucial to his survival (mentally) to make the best of it. And second, to cherish the bonds we have the opportunity to make as a result of illness. It really can be beautiful.

And just to end things on an adorable note: here are our two kiddos...they have no idea how dear their friendship will be to them in years to come!