Thursday, February 17, 2011

Sometimes you've got to feel worse...

...before you feel better (and sometimes you look like you've gotten stung by a swarm of killer bees).

Thankful Thursday - Welcome to the Hole!

Know what time it is? It's thankful Thursday time! We just checked into the Hole and it's time to celebrate a little thankful Thursday! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. as I mentioned last week, I no longer have the "linky tools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful that I'm feeling a little better. I still walk with a limp (thanks to the continued shots in the butt, twice a day, and the bloated belly), but I am thrilled to be back to my old self. My stomach is no longer super upset and I'm able to sleep through the night with fewer disruptions. I'm a big baby when I don't feel good - so I'm sure Ronnie's even more thankful than I am that I'm feeling better :)

I am incredibly thankful that we have been blessed enough to go through this much of the IVF process. We have been so fortunate by how smooth everything has gone. Having a few more embryos, so we'd have a few to freeze, would have been what we thought was "ideal"...however, I'm so thankful that my God knows what's best for us.

I'm thankful for caffeine free tea and hot chocolate. I have cut out all caffeine since starting this IVF cycle (December 24th), and for a coffee drinker it seemed like a HUGE task. However, I have actually enjoyed trying new teas and having an excuse to drink endless cups of hot chocolate. I am thankful that there are hot beverages to drink in the winter sans caffeine - or I would have felt lame-o not having something warm to drink in the morning.

I'm thankful for my mother-in-law ( read that right!). Ronnie's mom is great at a lot of things, but one of her strongest contributions to our lives is her love and support while Ronnie's in the hospital. Since we go in for our tune-ups 2 hours away from home, but right in Ronnie's family's back yard, we rely on them A LOT. His mom makes dinner most nights, spends time with us, and is always looking for ways to spice up the stay. I'm looking forward to being taken care of for the next 3 weeks, and I'm so thankful that she wastes no time to help. Knowing that we were going in today (last minute) she packed up all the coffee making supplies, a little table, table cloth, silverware, paper plates, coffee mugs, etc etc. I'm so thankful to have such a great role model of how to take care of someone while they're in the hole!

Ronnie's List:

As I mentioned yesterday, I'm so very thankful that I checked into the hospital without being too sick. I had to push my stay off a little bit, but according to my PFTs it hasn't done too much damage. I still haven't been able to exercise at my regular pace but I'm hoping that changes after about a week in here. I'll start to push myself pretty soon to make sure that it doesn't cause anymore bleeding. Really I'm just thankful that I'm so close to the opportunity to exercise again!

I'm very thankful that Mandi is feeling a little bit better each day. Her back is tense and the muscles around her spine are cramped, but it's nothing a massage from her hubby can't fix. We are now enduring the waiting game of finding out if we are pregnant or not, but we're thankful that we at least have the opportunity to be in that game!

I'm thankful that my wife has the ability to make the hospital feel like home even more than I do. By the time I got the car unloaded she had already made my bed with new pillows and new sheets that she brought from home. The coffee station was set up, the toiletries were out, the room was rearranged and the boxes to transport stuff were neatly stacked in the closet. It's not easy to make the Hole feel like home, but she manages to do it every time.

And finally, I'm thankful for the birthday present that Mandi gave me. I haven't been able to use it all week as my computer's been in the shop, but I was finally able to set it up yesterday. It's called Dragon Dictate and it gives me the ability to speak my blogs instead of type them. I'm a very slow typer, I do the chicken peck, and I spent half the time rechecking my work. Now this program isn't 100% perfect but it does but it definitely saves me time (You'll probably see some silly grammar or words on these blogs from time to time because of it). Thank you wifey!

Wednesday, February 16, 2011

Hospital on the Horizon

Today or tomorrow I'm expecting a call from the hospital. I knew this day was coming and I'm actually excited to be able to get in and get tuned up. As many of you know, I've had some issues with bleeding that unfortunately have made it almost impossible to exercise or even do my treatments at the level that I'm used to. After three weeks or so of this, you could understand that my lungs definitely feel different and more tight than there used to. Putting off hospital stays isn't something that is commonplace for me, as I understand the importance of putting my health first, but under the circumstances I'm able to forgive myself. I've been needed around here in the last couple of weeks and in my mind there really wasn't any way around it. Not only did I have to be around to do my part in the IVF process, but I also had to be here to assist Mandi in hers. And after the episodes we experienced after Mandi's egg retrieval, I'm sure thankful that I was around. There certainly are some times in life where you have to make tough decisions. In this case we're thankful that in the past three weeks I haven't felt like my health has taken a major blow.

So now it's just a waiting game. My CF team called a bed in for me today, but none were available. Apparently my hospital was on what they call “code purple”. Basically what this means is that they are not accepting any patients that are trauma cases. Believe me, I'm not sad at all that I don't qualify to be admitted. It actually worked out pretty well as I had a lot of catching up to do today as I just got back my computer and had fallen a little bit behind in my e-mails. I'm hoping that I can get in in the next couple of days because the sooner I get in the sooner, I get out. I'm also hoping that once I get in my lungs respond well to treatments and I am able to start exercising quickly. Obviously, we need to figure out the source of the bleeding and possibly do something about it before I'm really able to push myself. I'm counting down the days before that happens.

I'm also facing another interesting transition heading into this hospital stay. For the first time ever, I'll be seen by an adult CF team. My hospital was forced to develop an adult team as the adult population at my clinic continued to grow. It is understandable, as adults have separate issues, but that certainly doesn't mean transition will be easy. I've been building a solid relationship with my CF care team for the past 31 years and that isn't something that's easily replicated. It's going to take time, trust and an open mind to develop the kind of loyalty to this new team that I have for my old one. Luckily, I still see my peds team in clinic and they'll be updated with how I am doing. I'm actually looking forward to working with this new team as I really think my hospital has a good opportunity here to build a good adult CF program from the ground up. I'm looking at this as an opportunity to be part of something new and hopefully something big. Wish us luck!!

Tuesday, February 15, 2011

Trusting in His Will

First of all, happy belated V-day to all of you lovebirds out there. Mandi and I had (and I quote myself) "a day just like any other day, only today I got you flowers". Mandi said it was "perfect" therefore, I shoot, I score. Anywhoo, as most of you probably know, we had our embryo transfer on Monday and now we go into the waiting phase of this ever so lovely IVF game. I know that Mandi shared with you guys some of her feelings so I wanted to do the same. I'm not a big "feelings" guy, but many of you expressed how helpful it is when we really share our mindset throughout this whole process. I figure it can't hurt anyway.

Let me set some background. From the very beginning of this IVF process, all we've ever heard was "you guys are going to do great". This I'm sure was for a multitude of reasons, but it often came back to Mandi's age and the fact that, as far as they could tell, she had no infertility issues of her own. You would have thought that this was all just a formality and we could start decorating the nursery after our very first appointment. I can tell you this (and I think it probably rings true for a lot of women out there), when you have a wife who may have trouble managing her expectations, it's actually not what you want to hear. Since the beginning of this whole process I've been very aware of the fact that we could very easily get ahead of ourselves only to be hurt and let down in the end of this. The fact is, when going through the IVF process, couples have a better chance of "failing" than they do succeeding. Our doctor is one of the best in the state (statically speaking) and he still only turns in a 67% pregnancy rate, and please notice that doesn't say live birth rate. Needless to say, the odds were against us.

Knowing the struggle and heartache that could come upon us throughout this process we knew that we needed someone to lean on. The great part is that we're both blessed with incredible families and happen to be pretty connected with a very loving and embracing online community full of peeps that we have had the privilege of getting to know these last couple of years. Having those type of connections are great to have in our back pocket, but we knew we needed someone that was always going to be available for a chat or had a big enough shoulder for both of us to lean on. And thank God, we knew just the guy...literally, thank God.

We've turned this entire process over to Him. He knows the desire of our hearts, but the fact of the matter is, His desire is always perfect and ours is not. We've been in prayer with Him daily just asking that His Hands be all over this thing and that He would grant us a peace that passes all understanding no matter what the outcome. Now, it's much easier to throw out prayers and write blogs about this topic than it is to actually live it out. I think Mandi eluded to that a bit when she shared with you her moment of just needing to be alone in the bathroom after we got our embryo results. The great part about it is that we know we can't rely on our own strength to get through this, no matter what happens. No babies will be extremely tough. Babies will be extremely tough. I often hear people say "God will never give you more than you can handle". This is not only NOT in the Bible, it's just simply flies in the face of a sovereign Lord. God will give us more than we can handle if for only the fact that we're reminded that we must lean on Him and draw from His strength to get through it. If we were never given anything "too big" for us, than what's the point of having a Savior?

Point is, I'm sure glad we handed all of this over to Him. When the doctor showed us a sheet full of embryos that "didn't make it" I felt like all of my strength had been taken from me. The old expression "wind out of my sails" couldn't have painted a more perfect picture. But, just as quickly as I felt that feeling, a new and much more powerful sense took over, a sense of peace. And clear as day, and almost in an audible voice in my head, I started to hear a prayer that Mandi and I had prayed literally every day since this process began. "Lord, please provide the exact number of embryos that you would like us to have". We knew that number could be 10 and it could be 0. I then nodded my head and said to Mandi, "He wants us to have two". Here's the thing, He may provide more later and He may not, but right now I believe with 100 percent certainty that God provided us just 2 embryos out of the original 15 because that's exactly how many are perfect for us right now. My God doesn't make mistakes.

We could also come out of this whole process with no babies. That will of course be another blog for another day were that to happen, but I'm very comforted in another truth that I know about God. My God doesn't waste pain.

Monday, February 14, 2011

Embryos on Board

Yesterday was the day - but do not be afraid by the lack of posting :) Everything went very well, I just came home and laid right on the couch, and, truthfully, penning a blog wasn't so much a priority.

Yesterday at 2:30 our embryo transfer was scheduled. We were delayed by a few hours, and ended up doing the transfer around 4:45. They brought me back into the office's OR, had me put on a gown, booties, and little hat, and Ronnie put on a full body jumpsuit thing (our IVF lingerie), which made him look more like he was clearing toxic waste than makin' a baby. We waited for our doctor to come in to talk to us about our embryos and the game plan for the day. He pulled out a sheet of paper full of scribbles and began to unpack what it held. "You had 15 embryos. Now you have 2, maybe 3. The rest stopped developing around 8 cell embryos." My tummy sank. How could we lose so many? I tried not to feel sad or get choked up: "he did say we had 2 to transfer today, after all," I told myself. After discussing the babies we were putting back, and the 3rd they'd watch overnight (which would likely peter out also), he left the room. I jumped up to go to the bathroom to process alone for a minute before having to discuss with Ronnie. I was so bummed, but trying to just focus on the fact that we had two to put back. Then it hit me. Maybe this was God answering our prayers. Our primary prayer through this process was that he would provide just the right number of embryos. We were going to use through all of the embryos we had - even if it meant 15 kids. It hit me that I shouldn't allow my mind to run through all the "what-ifs" and "to do's" if these two didn't take. Instead, I should take a few minutes to thank God for answering our prayer, even if it didn't make sense at this very moment.

So I emerged from the bathroom with a new 'tude. Excited. Ready to let these two little embryos make themselves at home in their happy mommy's tummy (no one likes a mad, bitter, worried mommy anyways, right?) Ronnie and I chatted about our thoughts on the embryos we lost, and the 2 we were transferring in a few moments. He shared my thoughts exactly.

A few minutes later we were making our way onto the bed where it was going to happen. I have to admit, I never pictured getting pregnant on a bed like this. In my mind there was never me, my husband, and 3 additional people around. Certainly no one would be wearing the clothes we were wearing. I never pictured it this way, but it was perfect! Ronnie stood at the top of the bed, holding my hands and smiling at me (he was wearing a mask, so while I couldn't actually see his smile, I could tell by the way his eyes were squinted that he was smiling). I prayed that this would go smoothly. Dr. Nemiro put the speculum in, and then inserted the catheter through my cervix. I prayed that my babies would get there soon and that God would keep them safe on their journey into my belly. 30 seconds later, the embryologist came through the door (they were communicating through a window in the wall, from OR to lab, the whole time to make sure the timing was perfect.) Drew, the embryologist, had our babies in a syringe/catheter, linked up to the catheter Dr. Nemiro had already placed - and with a steady push of the flushing fluid into my uterus, our babies were home. I prayed that they were getting nice and settled and that God would make this their home for the next 10 months. They wait 45 seconds before removing the catheter to allow the embryos to float away from and land somewhere. I prayed that they were landing somewhere and that God would protect them in my belly. Next thing I knew we were done. Just like that, two babies in my belly. Ronnie kissed my forehead and I tried my best not to move, to allow them to get comfortable.

We had to wait for an hour before leaving the clinic (we actually laid there for more like 1.5 hours, I wasn't in a hurry, wanting to give them all the time in the world to get comfortable...I would have slept there if they left me!)

So that was it. That is how you begin carrying two embryos in just a matter of hours. Now it's just pray and wait. Our pregnancy test is scheduled for next Tuesday, February 22...I think this will be a LONG week!

Sunday, February 13, 2011

28 years old and one regret. Not bad.

by Michelle Matta

When Ronnie asked me to do a guest post I was excited to do it immediately. I have a lot of disability-paid hours to spare, tons of time during treatments for my 24% lungs, and a mind that needs a break from anticipating a call that is coming anytime. A call to tell me whether the doctors think its time to list for transplant following the assessment I did 3 weeks ago.

The delay in my post-writing was a combined result of the stresses of waiting for that fateful call, and the urgent desire to find a way to convince anyone out there to avoid my fate at all costs.

I had 80% lung function until I was 19 years old. No admissions until I was 23. In the years from 19 to 23, I lost 40% of my lung function, and I didn’t smoke or do drugs at all, or drink or date much. It was a direct result of a lifetime of little to no physio, and putting life before CF always. University, part-time jobs, socializing, everything typical of a young adult. I saw my numbers fall at clinic and forcefully proclaimed that I felt “fine”. Which was true, until I went below 50%.

I want you all to consider that you may have things going on right now that feel really important. Maybe you go to school, maybe you work, or both. Maybe you like going dancing all weekend and find it hard to squeeze in treatments. Whatever it is, take a moment to live slower. Physio is not as time-consuming as it feels. Spend 15-30 mins on facebook with your vest on. Watch your favourite show with the flutter in your mouth. Get a puppy and take him for a run every day. You’ve heard it all before, but trust me, the way it feels to wonder if you could’ve helped yourself have just 10% more lung function is too difficult to explain. 10% that could’ve meant pursuing surrogacy with my husband and having a baby on the way instead of living in the limbo of pre-transplant. 10% that would mean no oxygen concentrator chugging at night, or beside you in the mall, or preventing thoughts of winter trips to Florida. Maybe even 10% that would’ve let you be healthy enough for the most fabulous drug trial to stabilize your pft’s and save you from transplant entirely. It’s possible. It’s not about saving yourself from CF, its about making your life better. Just the little bit that you have the power to control, means a complete difference in your future at 25, 30, 35, and beyond.

And that university load that’s holding you back? That job you’re always stuck overtiming at? You know what happens to them? They become a terrible math equation. My 4 years at university bought me only two and a half years at my job before I had to stop working. Please remember that slow and steady wins the race, and unfortunately with CF, our best bet is to sometimes compromise living so busily in order to make it to the next step with good health.

If only I had known that my dreams would come true, and I would fall madly in love and ache for the rest of my fairytale. I would’ve never EVER missed a single physio session or chance at exercising. If only I had known that feeling fine is not enough. That’s my one regret.

Note from Ronnie: Thank you SO MUCH Michelle for taking the time to write this pointed and powerful guest blog. I've had the opportunity to share various emails with you and one thing is for sure, your desire to help others is very clear. You explicitly said to me "I hope my story helps someone out there". Well Michelle, I can guarantee you that this will help more than one. Sometimes, sharing our one regret can be more powerful than sharing our many accomplishments. Thank you.