Monday, June 20, 2016

New Adventures

Holy smokes have we been busy!

Recently, Isaiah and I sat down and looked over finances. UGH. When you have a mailbox full of medical bills each day, that is quite the depressing task. We discovered that even though we had put most of the bills on payment plans, (because let's face it... who on earth can pay those outright every time) we just have too much money going out every month and not enough money coming in. Without medical bills, we are totally fine, but with... not so good. While trying to figure out what we were going to do about it, I was invited to an online LuLaRoe pop up. Initially I didn't think much of it, but because a good friend of mine invited me, I thought I'd see what it was all about.

It's actually pretty darn cool. LuLaRoe is a clothing company started by an amazing husband and wife team (a lot of their family actually work for the company as well). They specialize in incredibly comfortable but super cute clothing for women (XXS-3XL) as well as kids and even men's clothes. I will admit, I was skeptical at first but the more that I learned about the company... the more that I loved it. They have their own team who create all of their prints and then each print is only used on 2,500-3,000 (ish) items (they have SOOOO many styles) and then that print is discontinued. Essentially each print is limited edition and that means that they have new prints coming out constantly. I did all sorts of research on the company and their clothes... and then I tried the clothes. Oh my goodness. I was hooked. After MUCH discussion and Isaiah urging me to give it a try, I submitted my paperwork to become an Independent Fashion Consultant.

I will still continue working at my full-time job during the week but on my lunch breaks, nights, weekends, and holidays I will be selling LuLaRoe. I know that it isn't going to be easy, but feeling useful and providing for my family makes it so worth. Then you add the fact that I have always loved working in retail AND I love love love the clothes and the company. It is really a no brainer. I'd be silly not to try.

After submitting my paperwork, I waited a very long 11 weeks until I got my official call to place my initial order, and then 2 subsequent orders for a grand total of 504 items. Less than a week later, the boxes started to arrive. The past few months have been absolute craziness with preparing space in my house to store all of my inventory and actually processing those initial shipments but I just keep in mind my ultimate goal, paying off those pesky medical bills! So far I've sold a few items to my mom and a few to the ladies that I work with but this coming weekend I'm having my very first open house (YIKES!) and then I'll follow it up with my first online sale. I'm super excited and super terrified. Obviously there is always self doubt when you are doing something that is so huge. This new business is an investment in our future though. We are investing time, money, sleep, etc but I just know that with a lot of hard work, this is going to pay off.

So if you are in the market for some new clothes or just want to check out what this company is all about, I'd love to have you join my Facebook group or like my business page. This is a new adventure for my family and I would love to help you find some clothes that make you look and feel amazing.

Okay, now my lunch break is over... back to my other job :)

Facebook business page:
Facebook VIP Shopping Group:

Sunday, May 1, 2016


It was around this time 2 years ago that Isaiah and I flew to Seattle and first met with Seattle Cancer Care Alliance. It was around this time 2 years ago that we learned that Isaiah had cancer and that I was pregnant (for the 5th time) with Audrey. This time last year, Isaiah, Audrey, and I were living in a small apartment in Seattle waiting for them to let us go home after all that followed Isaiah's heart failure. What a crazy few years it has been.

This year, things look so much better. We have an amazing 15 month old who keeps us VERY busy. Isaiah finally heard back from the doctors that is is NOT cancer. We aren't sure exactly what "it" is that they saw and biopsied, but we are very happy that it is not cancer this time. Unfortunately during Isaiah's week in the hospital (thank you blood thinners and LVAD for keeping him in the hospital for a week for something that should be MAYBE an overnight stay), not only did the poor guy have to sit in the hospital forever, but once he was ready to actually leave, discharge paperwork signed, bags packed, everything... they came in and told him he'd probably be there for another day. Apparently they did a culture of what was biopsied and they found that he had an infection. Again. An infection that only responds to IV antibiotics. Again. The poor guy has already done 2 weeks and then a separate 12 weeks of IV antibiotics for a different infection during the end of last year and the beginning of this year. Now, he would need IV antibiotics yet again. Which means another PICC line (and believe me when I say, those things are a PAIN in the butt).

Thankfully, we were able to convince them to get the PICC line put in ASAP, give him his first 2 doses of meds, and let him go! It may have been midnight before he was able to leave, but he still got out of there that night. Which worked out well too since he was able to get on a flight early that morning.

While IV antibiotics seriously suck, we are so glad that this doesn't require him to stay in the hospital. We are so glad that he was able to come home. We are so glad that we were able to spend a few hours yesterday, going from park to park with some family to let the little ones play. Isaiah even got on the swings for a bit. It was a lot of fun.

We are trying to not let any of this medical stuff or every day stresses get in the way of living our lives. We want to still take time for date nights and family days. We can't let this stuff run our lives. We can't waste however many days we are lucky enough to have together, thinking about how things should have gone. Yes, SHOULD. Because no one should be diagnosed with cancer, and certainly not at such a young age. No one should go into heart failure ever, let alone in their 30s after battling cancer. No one should have to have SO much bad happen in such a short period of time. But it happens. Every day people deal with stuff, some much worse than what we've encountered. It sucks.

But you can't let it consume you.

You can't allow the circumstances in your life to take over. You have to live your life. You have to have fun. Go on that vacation. Have that date night. Enjoy every moment that you get. Each day is a precious gift. I am so thankful for each day with Isaiah and Audrey. I am so lucky for our family. Speaking of which... it's time to go spend the rest of the day with them.

Thank you for all of the prayers these past few weeks.

Oh, and here is a picture of Audrey yesterday. She's such a happy kid.

Thursday, April 14, 2016


Back in February, Isaiah went back to Seattle for follow up scans to make sure that he is still cancer free. Unfortunately, the scans were inconclusive. The radiologist thought that he saw something but with all of the hardware in there, it is so hard to see very clearly. They decided to just wait a few months and scan again.

A few weeks ago we got a call letting us know that he'd been added to the surgery schedule for the same week as his follow up scans. Surgery? Uhh... why? Well, we finally got everything mostly sorted out. He insisted that I stay home with Audrey, so I did. He was set to fly out this past Monday. Sunday night, Audrey kept me up all night (she got sick and is getting 4 molars in all at one time) so I ended up staying home Monday. Shortly before we were going to head in to the airport, we got a call that his dad had had a stroke and was on the way to the hospital. We packed up and went to the hospital for a little bit before it was time for Isaiah to get to the airport.

After Isaiah's flight took off, I was on the phone with my mom and a HUGE gust of wind hit our house out of nowhere and ripped a bunch of shingles off our roof. They flew everywhere. We had plastic just flapping in the wind up there. Thankfully, my dad recommend a local roofer who was at my house in about 15 minutes. Sure enough, we could patch it but with just a little more wind, we'd end up patching it again, and again, and again. We knew we'd need to get a new roof soon, but this was not WHEN were expecting it.

Monday was a weird day.

Tuesday, Isaiah had his scans but we didn't hear what was on them until yesterday. Yesterday afternoon, Isaiah talked to the surgical team. The CT scan didn't really show much of anything (same type of scan that they did back in February). However, the PET scan showed that there is definitely something there. The basic concept of the PET scan, if I understand it correctly, is that they inject you with sugar, some of which is radioactive sugar. The radioactive sugar will collect in an area where there is a mass. They then scan a few more times at specific intervals in order to see how the area is taking up the sugar. If it is taking up only small amounts, it is likely non cancerous, that is normal. If it is taking up a lot of sugar it can mean cancer. Through some research, I found that this can also happen, even when cancer is not present, when the area is inflamed or infected.

His PET scan revealed that something is definitely there and it was taking up a lot of sugar. Definitely not the results that we had hoped for but the only way that we will KNOW what it is, is a biopsy. Very early this morning, Isaiah was taken into surgery. He's been in there for almost 4 hours so far. Waiting is not fun. Oh, and we are getting a new roof put on our house today as well haha. I guess we like to do everything at one time.

So for now, I am waiting... Waiting is hard. I knew that I would be useless at work so I stayed home with Audrey. I am waiting, and praying, and trying not to obsess. Obviously that's working well since I'm here writing it all out.

Prayers would be greatly appreciated!!!

Saturday, March 19, 2016

Part 3

Wow... I've been a BAD blogger :/ I have been so caught up with everything that I just haven't had a chance to sit down and write things out. I think part of it has been due to being busy and the other part is that I have SO much I want to say and it is overwhelming. If I started typing now, I think I'd have to be on my computer for a good week straight to get it all written down... probably even longer.  Then you add in the emotions that come back whenever I start reliving it... ya, it's a lot.

Anyway, where did I leave off after the last update? I believe with Isaiah waking up at the beginning of February and finding out what all he had been through over the previous week. I ended my last update replaying how he had finally been able to hold Audrey after waking up. Before Audrey was even born, we knew that he was sick. We had been told pneumonia but after she was born, the docs were so unsure of what was going on with him that Isaiah was worried he was contagious so he really only held her a few times before everything happened. Watching him hold her and in spite of everything that his body had gone through and was still going through, he looked so much better. So much healthier. He looked so happy. Heck, just thinking about it gets me all teary eyed.

After a few days with the second temporary heart pump, the doctors informed us that unfortunately his heart had not continued to heal as they had hoped. They believed that an LVAD would be the likely next step. Just to double check, they gave him a few extra days to heal and then ran some tests. While closely monitoring all of his vitals and his heart, they turned down the temporary heart pump to see if his heart continued to function properly or if it was clear that he still needed that support. It was pretty clear to them that he still needed the help. His next heart surgery was scheduled. He would be getting the LVAD.

I can't remember if I've explained what that really is and if so to what extent I explained it so here is a brief rundown. You can always google it too. It's pretty incredible. A LVAD is a Left Ventricular Assisted Device. Essentially this pump sits underneath his heart to do the work of the left side of his heart. He has no pulse. Isn't that bizarre?! I believe I've read that the newer versions have a simulated pulse of sorts but the version that he has is just a continuous flow... so no heartbeat. Although, we've discovered in recent months that if his blood pressure is higher than it should be, his heartbeat is definitely identifiable. The pump that sits under his heart is attached to a long cable that comes out around the right side of his belly. The cord is called a driveline. The driveline site is constantly covered by a see-through bandage that we change weekly and use to watch for any sort of infection or blood. (LVAD means he is also on A LOT of blood thinners so he bleeds super easily.) The driveline connects to his "controller". Yep, controller. Sounds like parts of a video game system to me. The controller is the brains of the operation. It displays various numbers regarding the pump and is also what will alarm if the pump is having issues. The controller is then connected by two cords to either batteries or his power module (plugs into the wall). He has to be connected to either the batteries (2 of them) or the power module at ALL times. It is was keeps the pump, and inevitably his heart, functioning.

There are A LOT of things that go along with a LVAD. He can't be submerged in water, he has quite a few steps that he has to do in order to take a shower. He has to be on a lot of blood thinners. He takes a lot of medication. He can't have CPR. He has to be very careful about infections. He has to make sure he drinks enough water, eats regularly (and hopefully healthy). He has a TON of equipment that he actually has to have with him at all times. He has to have a back up controller and back up batteries with him always. You just never know. I also bought him a raincoat to keep with his backup equipment since a heavy downpour could end up being fatal for him. How crazy is that?!

The LVAD has changed our lives in many ways and sometimes I can tell that it really gets to Isaiah. But what I try to always remind him of is that the LVAD is the whole reason that he is alive today. He has been able to watch our daughter grow over the last year. He wouldn't have had that otherwise. He would have only had a little over a week with her. During which time he was soo sick. I would have been a 24 year old widow. That's terrifying. He has been through SO much in the last few years and I just couldn't stand thinking that that could possibly be the end for him. It didn't make sense to me. I didn't want it to make sense either.

Isaiah underwent open heart surgery about a week after he woke up from sedation after his 2nd heart surgery. By this point, I believe this was the 7th time that I'd sat in a waiting room while he went into an OR. 4 with his cancer stuff and then this was the 3rd heart surgery. 7! In under a year. He did well, and was back in the Cardiac ICU in a matter of hours and was awake with the breathing tube out the following morning.

Because it was open heart surgery and his chest had to be cracked open, he was put on a weight restriction. For the next 6 weeks, he was not allowed to lift, carry, push, pull anything 10lbs or more. By this time, Audrey was JUST on the edge of being too heavy so I would just get him all set up with pillows and place her in his arms so that he could still hold her. He was also not allowed to reach his arms up over his head or too far behind himself. This was especially difficult since he had only been able to move around at all by using his arms since he was still unable to use his right leg. Then you add in the fact that he'd been in a hospital bed for a couple of weeks and muscles were weakening like crazy. We knew it was going to be a tough 6 weeks until those restrictions were lifted but Isaiah was determined to get as strong as he could, as soon as he could.

A few days after surgery while Isaiah was still in the ICU, my mom, Audrey, and I flew back to Alaska, leaving Isaiah in Seattle. Thankfully some of his family flew back to Seattle to be with him while I was gone. Obviously he was being very well cared for at UWMC but it just felt wrong to leave him there without friends or family to help the time go by.

Since we had left in such a rush, I'd left the house in total destruction but when I came home, my amazing sister-in-law had been at my house and cleaned up A LOT. She also left some sweet little gifts for Audrey and I. We seriously lucked out with amazing friends and family, didn't we?! :) I flew home Sunday morning, got some stuff done around the house, and then Audrey and I were off to a fundraiser. Did I mention how incredible our friends and family are?

With the help of family, friends, acquaintances and many total strangers, some friends and family put together a fundraiser for our family. It was... incredible. I seriously don't even know how to describe it. I was running on a few hours of sleep and was already incredibly emotional thanks to all that had happened and the incredible postpartum hormone craziness (Audrey wasn't even 2 weeks old yet). We even made our local paper (article here). There were SO many people at our fundraiser. I cried. A lot. There were hundreds of people. Some were friends or family of my family or Isaiah's. Others were co-workers (past and present) of myself, Isaiah, or of someone in our family. Some were total strangers. There was a dessert auction, a silent auction, a live auction, a raffle (or maybe more than one), etc. People were so loving and giving. It was such a humbling night.

Our community just came around us to support us during such a difficult time in our lives. It was such a surreal experience to see all of these people there for us to offer their love, kind words, prayers, hugs, and financial support. We couldn't have made it financially without that fundraiser. Without a doubt. I was in total awe the entire night. A support system like that is so much better than anything I could've imagined or hoped for. We are truly blessed and we do not take that for granted.

After the fundraiser Sunday night, I had 2 more days to get some stuff in order before I flew back to Seattle with Audrey. I collected all of our mail (BILLS... lots and lots of bills), met with my boss to discuss a plan, re-packed for the 3 of us for a few months. It was a lot to do in a short amount of time but I did not want to be away from Isaiah for very long. I wanted to get back as soon as possible.

While I was gone, Isaiah's orthopedic surgeon who did the cancer removal surgery, gave him clearance to put as much weight on his right leg as he could tolerate. This was incredible news as he hadn't done that since the beginning of September. The next few weeks were rough.

I know that Isaiah felt bad that Audrey and I spent all day with him in the hospital, but I wouldn't have had it any other way. It wasn't hard for us. We stayed in an apartment very close to the hospital. We'd get up in the morning, get ready, and head over to the hospital where we usually spent the whole day. As it got closer to bed time, I'd pack Audrey up and head back to the apartment so that I could get her to bed at a decent time.

Those weeks were very tough on Isaiah though. Not only was he in the hospital (one of his most hated places) but he was in a lot of pain and working VERY hard to re-gain his strength. He had to learn how to stand again. It took a long time. He was basically starting from scratch and for a 6'5" guy, that is NOT an easy task. Especially because he couldn't use his arms at all. So not only was he weak from everything he'd been through, but he was only able to use his legs which at this point, were the weakest muscles in his body.

The staff at UWMC is absolutely incredible. They fought the insurance company for us to get him into the inpatient rehab unit (so he could avoid going to a nursing home until the 6 weeks were up). In the rehab unit he learned how to stand again. How to walk again. It wasn't fast and it wasn't easy but he made huge improvements every single day. He was determined.

Some of his amazing college friends actually came to visit while we were there. They actually flew to Seattle for the weekend to come see him. It was awesome. It really lifted his spirits. While he was in the hospital we had family and friends periodically coming to town.

Finally the day had come, he was being discharged from the hospital. After his cancer removal surgery, he spent exactly 4 weeks in the hospital. This time, he spent almost 8 weeks in the hospital. He was SOOOO excited to leave. We were required to stay in Seattle (a few minutes from UWMC) for almost 8 more weeks.

While stay in Seattle we did get to spend a lot of time together, the 3 of us. That is time that we wouldn't have had together if we'd been at home. I know that Isaiah would have been working. It was so nice to get that time together. We did go to the hospital most days for blood work and various appointments but we were able to feel a lot more normal. We went to the grocery store, went to lunch, spent time with family as they'd fly in to visit for a few days here and there.

It was hard to be away from home for so long but there were some really good parts and overall, the fact that Isaiah was alive and healing... it was more than worth it. Once Isaiah has been cancer free for a few more years, we hope that we will be able to get him listed for a heart transplant. More than likely, we will end up back in Seattle for a few months if he is to get a heart transplant in the future. For now though, we want to be boring. We want uneventful, boring lives. We want to be home, see our friends and family, spend time together as a family, go to work, and avoid any more hospital stays. Isaiah has had to go back to Seattle a few more times since we got home in mid May 2015 but for much shorter periods of time and ironically none of them had to do with his heart or his LVAD. They were actually due to an infection that developed in the incision from his cancer removal and then to go back again for scans and follow up with his oncology team at Seattle Cancer Care Alliance.

I seriously can't even describe how thankful we are for the incredible people who have been placed in our lives over the last few years. The teams at Seattle Cancer Care Alliance and University of Washington Medical Center are absolutely incredible. We actually wanted to bring a few of them back to Alaska with us. They are skilled, knowledgeable, and caring. As they did rounds, they'd stop and talk to me and Audrey. They saved Isaiah's life. They became invested in us. They care about us.

The last few years have been so up and down. We have experienced some of the scariest, most awful days of our lives, and some of the happiest days of our lives. It has been a whirlwind. I am so so grateful for everyone who has prayed for us, offered kind words or words of encouragement, offered financial support, a hug... everything. We could not be where we are today without each and every one of you. Thank you so much. You have changed our lives.

This is by no means the end of our craziness, I'm sure. But for now, we get to be normal... well our version of it anyway.

I'm sure that there will be random follow ups in the future or moments of rehashing something else that I didn't recap. Obviously, there has been a lot happening! :)

Daddy-Daughter time watching March Madness 2015

Wednesday, September 30, 2015

I am offended that you are offended...

I had every intention of posting Part 3 of what the beginning of 2015 entailed for my family before I posted anything else, but this has been driving me NUTS and I had to get it out. Yes, this is my rant and yes, it may be offensive to some, but this is my opinion and this is my blog.

 Today, I read something that was finally the straw that broke the camels back... or in my case the last article about how some hypocrite wants to try to silence the pro-life crowd by calling us hypocrites. I am absolutely beyond sick of it.

I'm sure we have all read about, heard about, or have seen the videos regarding Planned Parenthood that have been plastered all over social media and the news lately. Some people are upset that the videos were taken and then released. Guess what?!?! TOO BAD. This is something that people SHOULD know. We all to often, play stupid. We ignore what is right in front of us. What we don't know, can't hurt us right?... WRONG.

Every. Single. Day. there are people killing babies, sadly, some do so for profit. Now, I'm not here to shame women who have sadly made the decision to end the life of their unborn child... What you have done, it is done. That is now between you and God. Though I do hope that you think every day about the child whose life you chose to end. I have 4 babies in heaven. Not by choice. I would have done ANYTHING to keep them, but for unknown reasons, I lost each of those 4 babies. Thankfully, I have been lucky enough to be blessed with one baby here with me, but I still think about the 4 that I lost. I watch as my daughter sleeps, plays, laughs, learns to walk... and then it will hit me that I missed out on that which my first 4 babies. That hurts.

I find what Planned Parenthood does, absolutely shameful. I honestly do not understand how the people that work there, or any other doctors office or clinic that performs abortions, can live with themselves. How do you sleep at night? How do you look at the faces of small children, let alone your OWN children, knowing that you continue to kill babies willingly? How do you justify such heinous acts? I truly don't get it.

So back to what started this rant today... I read an article that was supposed to be a letter to the pro-life crowd to stop posting pictures of "dead fetuses". First of all, they are not "fetuses"... those are babies. Just because they had not yet finished growing and hadn't been born yet, that doesn't make them less human, no matter how much you try to convince yourself otherwise. If they weren't human, then what were they? They don't somehow transform from one species into another once they hit a certain level of maturity. Furthermore, it is murder. You are killing babies. If they weren't alive, you wouldn't need to kill them. How your brain can somehow ignore simple logic is beyond me.

This article is essentially condemning these photos because then people end up seeing them. Yes, that is the point. I have never posted a photo like that, nor do I ever plan to. It's not in my nature. But for people to get offended by it and tell us to stop because then people will see them... seriously?!?!?! Yes, the writer made a valid point that when photos like that are posted, inevitably someone will see them and it might hurt. The woman who miscarried. The woman with another failed round of IVF. The woman who lost their child after they were born. I am not discounting that pain because I know it all too well. But what hurts me FAR more than that... are the people telling us to stop because it hurts. It should hurt. It is the loss of a human life. It is the loss of someone's baby. It shouldn't feel good. By you telling me that my baby was "just a collection of cells" or "wasn't a baby yet", that hurts much more than any photo ever will. You are telling me that the life that was created, meant nothing.

I do feel that often times, photos like those immediately shut people off to what you have to say, but I understand why some people choose to post those pictures. They are to shock you. Why do you think commercials show images of injured animals or children who are starving in order to get you to donate money to help? They need the shock value to get your attention. They are trying to invoke emotion. They are trying to show you that these situations are REAL.

I am not sorry that these images slap you in the face with reality but obviously you need it. If you can't understand why pro-life people are against abortion simply based on the facts, maybe you needed a dose of tough love.

Do you get it now? Do you get why your dismissal of human life is so abhorrent to those who are pro-life? We already know that abortion is what so many people use as birth control. We know that an abortion is ending a babies life. Do you get that yet? Life is sacred and it is not being treated as such. Our society puts more value in the life of a tree or the life of a lion than the life of a baby. That is sad. In fact it is more than sad, it is absurd.

I am pro-life. I have lost 4 babies. I hurt when I see photos of children who have lost their lives. I refuse to apologize for the fact that the reality of what you support, is so offensive to you. I don't need you to help guard my eyes from these photos. You aren't doing me any favors by hiding the truth. Stop pretending and start caring. Start caring for the lives that have been lost. Start caring for the families who would give anything to have a baby of their own. Start caring for the family who lost a child. Stop disguising your lack of concern for human life as compassion for those coping with loss. It is insulting.

***For anyone that made it this far... please know that my heart goes out to women who have had to deal with loss. It is impossibly hard and I can't even imagine what it is like for women who are pro-life but are forced to end their baby's life in order to stay alive. That is NOT what I am talking about here though. I am talking about the women who willingly chose to end a life based on convenience. Those are two very different topics.

Friday, March 27, 2015

The past 3 months, part 2

Sunday, February 1st, it was now Superbowl Sunday, and Isaiah was still unconscious. Our family was beginning to take over the Cardiac ICU waiting room, as we did every day. A nurse came out to grab me as they said Isaiah seemed to be responding. My mom and I went back to his room and, with tears in our eyes, waited. The nurse turned to us and said that he was responding. My mom quickly asked if that was enough. Was it what they needed to deem him neurologically healthy enough to move forward with another surgery to save his life? Thankfully, it was a yes. Next thing that I knew, she ran out to the waiting room to let everyone know. There were tears and smiles and hugs all around. We could finally breathe. We could finally relax a little. I didn't realize it while it was happening, but it was as if I couldn't take a full breath after that first call back home that I needed to come to the hospital because things had gone bad. A huge weight had finally been lifted. I had been praying, desperately, for answers. Would he be okay? Would he wake up? What was the next step?

Since it was Super Bowl Sunday, and the Seahawks were playing, Isaiah would never ever forgive all of us if we didn't go watch the game and spend a little bit of time away from the hospital. Isaiah remained unconscious for the rest of the day (probably a good thing after the way THAT game went). A bunch of his family went back to their hotel to nap and watch the game. My mom, Audrey, and I went to watch the game with some of our family who live nearby.

Monday morning, the impossible happened. I went into his room early, as I did every day, and the doctors were just starting rounds. His heart had begun to heal. They had said that there was NO way that his heart would heal at all, but it was doing just that. The right side of his heart was doing very well and the left had started to recover a bit. They decided that instead of immediately going to the LVAD, they would replace the current (very temporary) heart pump with a different temporary pump that would allow him to fully wake up, participate in the decision process, and maybe even give his heart some time to keep healing. In which case, they would just wean him off of the pump, and control everything with medication. We were in shock. We were so excited that there was even the possibility of no long term pump.

Tuesday he was taken into surgery and they first tried to completely wean him off any pump, but his numbers didn't remain stable so they placed the new temporary pump. He was stable and doing well. His body was responding well to the extra help that the heart pump was providing. They kept him sedated for the rest of the day and expected he wouldn't be awake until well into Wednesday (after being sedated for so long and the rough condition he had been in, they expected it to take quite awhile to get out of his system).

Wednesday, we arrived at the hospital as we always had. My mom and I went back to see how things were going. Remind the nurses to PLEASE let us know as soon as he starts stirring and to see if we could somehow get the breathing tube removed BEFORE he was fully conscious. Just as we walked to his door to get some hand sanitizer before entering the room, there he was, sitting up... looking straight at me. I was speechless.... he was finally awake. I hadn't seen him awake in over a week and had come to expect many times over that week, that I might never see him look at me again. Yet he was. Eyes wide open. The first thing that he said to me when I got to him was "I almost died".

I had hoped to slowly give him bits of information and not overwhelm him all at once, but he already knew the biggest, scariest part of it all. He had almost died... more than once. His voice was pretty rough after being intubated for so long, especially with all of the coughing, but it was SO nice to hear him talk again. Before I took him to the hospital, he hadn't been himself, and I didn't really expect him to be himself when he woke up, especially with all that his body had been through. But there he was... my Isaiah. He was back.

I spent some time talking to him and filling him in on bits of what he had missed. While it is such an awful thing to experience firsthand, I can't even begin to imagine how it felt to hear that that was you... that was your body that had undergone multiple heart surgeries, received multiple heart pumps, flown on an emergency flight to another state, and worse... these were things that I never wanted to tell him, but I knew that I had no choice. I would rather him hear it from me than from someone else. He took it all surprisingly well. I'm sure a good portion of that was due to coming out of sedation and pure shock. Of all things, he kept apologizing. We were just so happy that he was alive, that he was awake, that he was talking, but he hated what we had gone through because of him. That's very Isaiah... thinking of us, instead of himself.

We brought Audrey in to see Isaiah. He had been so worried that he was sick with something contagious before we'd taken him to the hospital so he hadn't held her much out of worry that he might get her sick as well. Finally, he was able to hold her and enjoy her without fear. Seriously... that was the BEST smile I think that I've ever seen. Just 2 days later we were able to bring him out of his room and into the waiting room to hold her for a little while. Now THAT did my heart some good.

To be continued...

We know... not the best picture but considering what the 3 of us had been through... we looked damn good :) This picture was taken at the request of some friends that were putting together a fundraiser, and was also used in a news article that was written about Isaiah in the Alaska Dispatch News.

Thursday, March 26, 2015

The past 3 months... birth story, home with a newborn, and a husband with heart failure - Part One

Wow, I have been pretty much MIA lately, haven't I? Well, for good reasons I promise. I honestly don't even know where to start. If I start at the beginning, this will be a long freaking post... oh well. Maybe I should suggest that you read a few paragraphs and come back a few days later to read the next few? :)

DECEMBER 2014 and JANUARY 2015

About a week or so before Christmas, Isaiah and I were sitting in the living room watching some TV while dinner was cooking. He nonchalantly mentions "You know... I have been getting some tightness in my chest lately... Like I can't breathe very well." Cue major freak out by the preggo lady! "What did you just say?!" He then carefully reassured me "Oh, don't worry. It's not like a heart attack or anything." To which I snapped back with "Ya, because of all of the heart attacks you have had, you have plenty of experience to relate it with?!?!?!"

After googling every medication that he had been taking since his surgery to remove the cancerous tumor back in September, I calmed myself a bit by realizing that a TON of medications have side effects that sounded like what he had described. While I began pleading my case that he needed to notify the doctor ASAP, the tightness in his chest seemed to have gone away.

Christmas eve, we stayed out much later than normal (our new normal) and didn't get to bed until like 1am or maybe even later. That night Isaiah woke up suddenly, feeling unable to breathe and with a strong tightness in his chest. Just as quickly as it had started, it was over. We were exhausted Christmas day but he seemed to be feeling fine. And it didn't seem to come back. Until New Years Eve. Again, we stayed up later than normal. Well he did. I fell asleep on the couch at my parents house on and off until we went home. This time, I helped him sit up pretty quickly because he was starting to panic. Who could blame him? The guy couldn't breathe. I seriously started wondering if he was having anxiety attacks. It's not like he wouldn't have valid reasons to feel kind of anxious.

And again... nothing more. After this happened the second time we started to really talk more about it. He was having more difficulty breathing in general lately. Granted, he wasn't allowed to use his right leg still so he was literally jumping up and down the stairs on one leg. And walking? What was that? The best he could do was hop. Still, it didn't make sense why he would be having more difficulty breathing than he was back in November, doing the exact same things.

At his doctor appointment on January 6th, he begrudgingly mentioned it to the doctor that he'd been having tightness in his chest and difficulty breathing here and there. This had the doctor worried that he might have a blood clot in his chest. After the appointment, I took him to an imaging center for a chest CT scan and an ultrasound of his leg. As we were leaving town, we received a phone call from the orthopedic doctor that had ordered the scans notifying us that the scans seemed to show that he had double pneumonia and a blood clot in his right leg. He would need to see his primary care doctor to treat these 2 things. Ugh... He hates doctor appointments. He was absolutely THRILLED about this. Especially since he didn't sound like someone with double pneumonia, even according to the nurses.

The following day we took him in to his primary care doctor. This was the first time that he'd seen him since he had his physical a year prior. After a bit of catching up, we filled him in on what had been happening lately as he'd already been notified of what was on the scans. We left with a prescription for blood thinners and antibiotics. Cool. Done. Taken care of. That was easy...

Well, the antibiotics came and went. But there was NO change in his breathing. In fact, it was getting a lot worse. He was coughing like crazy. He felt like he couldn't breathe if he laid down. He wasn't sleeping. He truly was a mess. I begged him to call his doctor to let him know that the antibiotics didn't work. He refused. I was past my due date and wasn't exactly in the mood after work to attempt to drag him out to the car and off to the doctor.


On January 14th, the contractions started. I was at work and definitely was getting some contractions. Boy do they feel different than Braxton Hicks. I had already talked to my boss the day before about the 14th being my last day before I went on maternity leave even though I'd hoped to work until I had her. I ended up leaving work early that day because the contractions were getting more intense and closer together. I timed my contractions all night. I didn't sleep at all. Other than the 8-12 min between contractions. Isaiah was in such rough shape that he wasn't sleeping either. We were a mess. By morning, my mom had decided that she wasn't going to work that day and came over early to hang out and wait until it was time to go to the hospital. I had a doctor appointment scheduled for later that morning anyway. I'd hoped that I would be far enough along, that they'd just admit me.

My contractions were about 5-7 minutes apart by the time we went to my appointment. I came prepared to have my baby. I brought my hospital bag (left it in the car though, I did not want to jinx things). Mentally, I was as ready as I was ever going to be for labor. Let's DO this!

You can imagine my disappointment and past-due-preggo-lady anger when they sent me home after another membrane sweep and a mention that I was only 3cm. They don't admit until you are 4cm. SAY WHAT?! I was only 1cm away from being admitted AND I was having regular contractions. GRRRRR...

Well, I'd made myself an appointment for later that day to get my hair cut, since I was long over due and when I made the appointment the previous morning, I hadn't yet started having regular contractions. Some people have them for DAYS before they go to the hospital. I'll be fiiiiiine. Wrong again. I was too uncomfortable and having to stop and breathe my way through my contractions. No way would I be able to sit there and get my hair cut. I knew that once I was admitted, I wouldn't be allowed to eat... so we picked up some pizza! I still vividly remember sitting there in my chair, eating my pizza, and stopping every few minutes to hold my belly and breathe...

I continued to track my contractions so that I'd know when it was time. Hours passed and contractions continued to progress. I was having contractions every 4-5 minutes consistently for nearly an hour and then it would be like 9 minutes. And you know, they say that you need to have them 5 minutes apart, lasting one minute long, for one hour. Everyone told me, "That counts. Go to the hospital."  I refused. I was NOT about to go to the hospital too soon and get sent home. The roads were terrible and I was so not in the mood to hear that I had to go home again until I'd had that baby!

Finally, after about 3 hours of 3-5 minute contractions, I finally agreed that it was time to go to the hospital. I waddled my way back to labor and delivery to check in, signed all of the random forms, and changed into my lovely hospital gown. They hooked me up to that machine thing to measure my contractions. I was only supposed to be hooked up for 20 minutes, but instead I was stuck on there for 45 minutes. Which thoroughly sucked because laying flat on my back made the contractions MUCH worse. The doctor came in to check me again, and I was still only 3cm. SERIOUSLY!? I'd had my doctor appointment 6 hours earlier and since then my contractions had intensified significantly, and I hadn't dilated any more? The doctor sent me off to wander around the hospital for 2 hours to try to get things to progress a bit more.

Since Isaiah was in such rough shape, my mom pushed him in his wheelchair while I walked. We walked everywhere and eventually ended up in one sitting area where they sat down and I walked in circles around them. I'm sure it was quite the entertaining sight. My fat feet were killing me. They were so swollen that they didn't fit in my shoes, so they were rubbing the sides of my feet in a not fun way and I was thirsty. So we went back to my room, before the 2 hours was up so that I could take the shoes off, get some water, and march in place to finish out my 2 hours. I figured that was just as good as walking, right? I believe I may have even bounced up and down for awhile since that still felt better on my feet that walking around.

Last picture pregnant

My 2 hours was finally up so the doctor came back to check me again after they left me to lay down for 30 min hooked up to the monitor again. I was BARELY 4cm. I think she was being nice because she knew I might cry if she still said 3. She told me that I had two options. 1 - I could go home. Which she highly recommended. She thought that if I went home and got some sleep, that I'd probably stop having contractions and I could get some rest. 2 - I could insist on being admitted and have my water broken.

I could tell she was leaning (heavily) toward me going home but I knew that if I went home, I would not get any rest, which was the whole reason that I'd go home in the first place, and I would be back to the hospital in no time. What was the point in that? So after over 19 hours of contractions, they sent me to my delivery room (which was quite spacious and comfortable actually) and my water was broken.

Boy did that feel weird! It was such a huge relief though. Throughout my labor, I continued to plead with Isaiah to go get himself checked out since we were already in the hospital and he was feeling so terrible. Big surprise... he refused. I spent about an hour and a half, maybe two, hanging out in the shower on a birthing ball. That felt decent. The contractions were getting far stronger and I had to hold onto the metal bar to make sure that I didn't fall right off the ball. Wouldn't that have been a mess?!

After awhile I decided it was time to dry off and go back into the room with my mom and Isaiah and the nurse wanted to hook me up to the monitor again. Just like before, the contractions were much more difficult to deal with when I was laying down. For this reason, I hated that dang monitor. The contractions had become SO intense and completely on top of one another. I wasn't getting any sort of break between contractions (seriously, ask my mom or Isaiah... it was nuts).

The doctor came in to check me again because due to the intensity and frequency, she thought that maybe it was time to push and I just didn't know it. I was still only 4cm dilated. HOW WAS THIS POSSIBLE?!?!?! I am pretty sure that I cried when she told me.

Since lying in bed during contractions was so painful, I was very happy that I was allowed to hang out on the birthing ball next to my bed. I held onto the bed (again to make sure that I didn't fall off) and my mom stood behind me. I think she was scared that I was going to fall too.

At this point, I hadn't really slept in nearly 48 hours. I was actually nodding off on the birthing ball during the few seconds that a contraction would start to subside. I had to get back into bed because it just wasn't safe anymore with how tired I was. There were numerous times where I just cried. It hurt so badly and I wanted to do it without painkillers. Women have been having baby for thousands of years without pain meds... so could I, dang it!

Then I remembered one of my appointments during my pregnancy. The doctor had asked what my plan was for the birth. When I told her that I wanted to be pain med free, she told me that that was fine but that sometimes they do end up recommending an epidural to help the woman's body dilate. Apparently some women have difficulty with that, and will not dilate in a decent amount of time without it. Here I was, exhausted, going on 40 hours of contractions, over 12 hours of pretty intense contractions that were only getting worse and more on top of each other, and I was only 4-5cm.

They were starting to get pretty worried that by the time I would be fully dilated, I wasn't going to have enough energy to push... which brings its own slew of issues. I gave in. I did the one thing that I always said that I didn't want to do. I agreed to an epidural. I was desperate for a brief time of rest so that I could build back some strength. It took what felt like forever for the anesthesiologist to arrive. He was done quickly but once it kicked in, I noticed that it was only really helping on my left side. Eh, I didn't really care. I mean, I never had any opposition to feeling the pain of childbirth. However, the right side was still feeling EVERYTHING. I was still unable to relax and get any rest so I notified the doc that I needed it to be fixed. A different anesthesiologist arrived and tweaked something so that both sides were less intense. I was finally able to close my eyes for a solid hour. I didn't sleep for more than 30 minutes, but I was able to kind of rest. Not to mention, Isaiah and my mom got some time where they didn't have to listen to me breathing heavily, moaning, or crying.

The nurse came in to check me before she went on her break. I was terrified that I was still only 4-5cm. She made a bit of a face. "Am I still only 4?"... "No, actually you will be ready to push any minute now. I'll come check on you after my break." I tried to rest some more but failed... The moment I'd been waiting forever for was almost here. This baby we'd prayed for for so long, was almost here. How could I possibly sleep?! Apparently, there was a miscommunication somewhere because I finally had to hit my call light. The nurse had come back from her break but thought that I was sleeping, so she didn't want to wake me.... UGH! I'd waited more for no reason? Let's get this show on the road!

The poor doctor had been working for at least 20 hours by now and didn't even hear the first few pages from my nurse. Finally, it was time to push. That is when my contractions suddenly changed.... to every 7-8 minutes. YOU'VE GOT TO BE KIDDING ME...

I'd push... we'd wait the 7-8 minutes... I'd push... this was quite the long process. Once her head was out, I asked the doctor how many more until she thought she'd be out. She said probably 3 or 4 more contractions worth of pushes... HA! I was sooo not waiting another 30ish minutes. The next contraction came and I pushed... I got that baby out! The doctor was surprised for sure and was able to catch Audrey and put her on my stomach. On January 16, 2015 at 6:10am, Audrey was born - 9lb 2.6oz and 22in long. After crying, Audrey actually lifted up her head and looked around.
Audrey - only seconds old

Proud Dad

Mommy-Baby time
I was so relieved and so in love. She was beautiful. She was perfect. She was ours. I then spent the next hour holding my newborn baby.  For some people a 9lb baby might sound big, but considering the size of the babies that run in my family, I was just happy that she was under 10lbs. Eventually we were rolled out of labor and delivery, to my new room. I finally convinced Isaiah to call his doctor to let him know that the antibiotics had done absolutely nothing. His doctor prescribed an inhaler for which my mom wheeled him down to the hospital pharmacy. We attempted to take a nap, but I couldn't sleep. All that I could do was stare at this beautiful little miracle.

Family and friends rotated through during the day. We convinced my mom to go home and get some sleep and just come back in the morning. Isaiah slept somewhat but spent much of the night coughing and trying to catch his breath. I spent the night, working on latching and changing poopy diapers in between trying to sleep. Audrey and I got a bit of sleep and then it was morning. Mom arrived with coffee for me. I hadn't had coffee, real coffee in FOREVER (about 9 months - though I was pretty much off of regularly caffeinated coffee the past 2 years due to our TTC journey and the previous 4 pregnancies). I was feeling pretty darn good. Audrey was doing great. We were ready to go home ASAP. We had to wait for all of the various people to stop by and complete their portion of the discharge checklist. Finally around 2pm, we were heading home!

The next week was quite the blur of sleeping, feeding, eating, and mindless tv. Meanwhile, Isaiah was continuing to decline. After much nagging, he made an appointment to see his doctor again on Friday, January 23rd. We talked to the doctor. Described all of his symptoms. Blood was drawn and he had been scheduled for another chest CT on Monday since it was already so late on Friday. That weekend was terrible. Isaiah had declined so much more, so quickly. He was coughing so hard that it was making him throw up. He couldn't even hold down water. It was BAD. We called the doctor first thing Monday morning but he insisted that we just go get the CT scan before anything else.

It was rough, but we did it. We waited around in town after the CT scan to see what the doctor had to say. While I picked up some stuff at Target, the doctor called to tell me that his lungs looked even worse than before. He and the radiologist were, to use the doctors words, scratching their heads on this one. He'd decided we should get him in to see a lung specialist the following day. He'd already talked to the specialist and he requested additional blood work. More blood drawn. That night, Isaiah was too weak to even go upstairs. He got absolutely no sleep. I knew it was bad when he said "Shelby... let's go to the ER this morning." Uhh... this is the man that HATES hospitals. That meant it was BAD.

We decided that it was not a good idea for me or Audrey to be in the ER since she was only a week and a half old. So I called Isaiah's parents to see if they'd meet us at the hospital and keep him company. I don't know how we did it, but we got him into the car and into the hospital. I checked him in, filled them in on his history, medications, recent symptoms, etc. I waited about 2 hours and then finally went home. His parents were there with him, and it wasn't a great place for me or our newborn baby to be.

I went home, took a bath and shaved my legs. I hadn't done that in way too long. I could REACH my legs! It was incredible! haha. Audrey and I were having a lazy day at home, waiting for the call to come back and pick Isaiah up after they gave him some meds or whatever he needed.

Isaiah's mom called me to let me know that they had determined that Isaiah was sick enough that he needed to be admitted to the hospital, but they weren't sure if it would be a regular room or the ICU. ICU... That's terrifying. She assured me that I should stay home and she would keep me updated. Not too long after that, she called again to let me know that he was definitely being admitted to the ICU. They wanted to sedate and intubate him. He was so sick that they didn't even want to wait until he was in the ICU to sedate him. They were going to do that right away, in the ER. By the time I would be able to drive in to the hospital, he would already be sedated. She told me that she would continue to update me and would let me know when he was in his room in the ICU.

Isaiah was actually okay with this. He was excited at the thought of getting some rest. Shortly after my mom showed up at my house to hang out with me and Audrey, Isaiah's mom called me again. This time instead of her usual "Stay home. We will keep you updated." She said that I needed to come to the hospital right away. Once Isaiah had been sedated, he began to crash. His heart and liver were failing. I dropped to the couch as she told me this. I was in a state of shock. I knew that he was sick, but how had I missed it that he was THAT sick? How had he gotten THAT bad? I got off of the phone, and relayed the information to my mom. I shed a few tears on her shoulder but then it was time to work. What did we need for Audrey? Diapers, wipes, blanket, extra outfit, food, etc. While I ran around like a maniac, my mom called my dad because she realized that she wouldn't be able to drive. Any normal Tuesday, my dad would have been at work, but this Tuesday, he was at home (my parents house is only 4 min from mine).

He arrived by the time we were ready to go and we started the 30min drive to the hospital. During the drive, I knew that he needed prayers. As many as he could possibly get because I'd realized that he was dying. I used his phone to notify his boss and one of his co-workers with what was going on since I'd been keeping them updated all day since he wasn't able to make it to a big meeting that day. They quickly asked what hospital and told me they'd meet me there. I used the 5% battery that was left on my phone, to quickly text as many people as I could think of, asking for their prayers. Prayers that Isaiah so desperately needed.

I vividly remember thinking... this can't be it. This can't happen. Isaiah has always wanted a wife and kids. He JUST got his first child and hadn't been able to enjoy her at all since he'd been so sick. He was terrified that he might be contagious, so he hadn't spent much time with her yet. He had been in a living hell for the previous 6 months due to cancer and what the surgery (to remove the tumor) had done to his body. The past 6 months can't possibly be his end. He can't have survived cancer only months sooner, to have this be his fate. He can't be done at 35 years old. I can't be a 24 year old widow with an 11 day old baby. This can't be happening.

Upon arriving at the hospital, we ran into his co-worker and boss that were meeting us at the hospital and we rode up the elevator together. I walked into the ICU waiting room where most of his family had already gathered. After hugging his parents, they took me back to meet the ICU doctors and see Isaiah. I talked to the doctors. Offered additional information. And learned that his heart was functioning at less than 10%. His heart, liver, kidneys, and lungs were in VERY bad shape. The left side of his heart was enlarged to twice its normal size. Something that they said didn't happen over night. Which made no sense to me... he'd JUST had a chest CT scan done the day before. LITERALLY the day before. Was it enlarged on that scan and no one said something or had it actually happened overnight?

I will never forget walking in to his ICU room. I'd seen him in an ICU room once before, in Seattle after his massive surgery to remove the large tumor from his pelvis. But that ICU stay was planned. We knew when we walked in to the hospital, that he'd be in the ICU for a night or 2. But THIS... this was not planned nor expected. He had tubes and wires coming out of every possible place. He was so far beyond pale that he was actually grey. He looked like someone who was teetering on the edge of death. Which is exactly where he was.

I spent a lot of time talking to the doctors and nurses, and holding his hand, staring at him. He was completely sedated for all of this. The poor guy went to sleep thinking he just had pneumonia, he had NO idea what his body had been going through since he closed his eyes. Over the remainder of the day, friends and family arrived in the waiting room. We had probably 40 people in the waiting room at various times. You could see how well loved he was. People arrived, hugged, brought food and drinks, prayed, cried.... Finally, we all went home around 11:30pm to get some sleep, after we were assured that they would call with any news.

The following morning, the family of zombies that we had become made our way to the hospital again. Audrey and my niece Natalie, kept everyone well entertained and pre-occupied. It was incredible to have a piece of Isaiah to hold and hug while he laid in the ICU, fighting for his life. Some of his test results showed improvement, but he was still very much in the danger zone. They had removed the sedation to see how he tolerated it and he was even breathing on his own. While still unconscious he was able to come out of sedation enough to shake his head "no" that he was not in pain, squeeze hands and wiggle toes on command.

After a lot of prodding by doctors and nurses, we left the hospital that night around 9pm. We knew that we all needed to try to get some sleep since we didn't know how long this was going to last. Audrey was particularly difficult to get to sleep that night. I'm sure that was perfectly normal for a newborn, especially one that was sensing so much stress 24 hours a day from everyone around her. At about midnight, she finally fell asleep. At 12:15am my phone rang. Instantly, I knew it wasn't good.

Isaiah's heart rate had become very rapid, they had to shock him, at which point his heart rate became very rapid and irregular so they shocked him again. He flatlined but was brought back with CPR. How do you even process that sort of information. I remember asking how awake he was when this happened. Did he know what was going on? Was he scared? I was assured that he was sedated again and would not remember any of what had happened. They told me that they didn't expect anything further, but would call if necessary. I knew that I had to call and let his parents know. They couldn't find out something like this in the morning when they got to the hospital. They deserved to know. That was NOT a fun call to make. Out of mere exhaustion, I fell back to sleep. At 2:30am, my phone rang again... NOT AGAIN. This time, I was told that the cardiologist wanted to do a procedure so I needed to come to the hospital now so that they could go over it with me and I could sign the necessary paperwork.

I was sleeping at my parents house and had no car. I would need to go wake them up to drive me back to the hospital. I tried my best not to scare them but as soon as they saw me standing in their room, they were up and moving. I called Isaiah's parents again to let them know what was going on so that they could meet us at the hospital. I arrived at the hospital by 3am. As the doctor explained the procedure, I could see Isaiah laying there in the hospital bed. The day before, I'd have said he couldn't possibly look worse. I realized that I was wrong... he NOW looked even worse than before. I nodded and told the doctor to do whatever he needed to do. I would sign whatever they wanted me to.

I went back to the waiting room to sit with my mom, Audrey, and Isaiah's parents. After a few hours, the doctor came to the waiting room. He let us know that the tandem heart (temporary heart pump) was in place. They had to shock him again while they had him in the OR but he was tolerating the pump well and seemed to be stable. That was as far as they could go. He needed to be flown to the University of Washington Medical Center in Seattle. That was the same hospital that he had been to for his cancer removal surgery. The hospital he spent a month in. The place he said he NEVER wanted to go back to. Talk about ironic.

I asked the doctor if he'd ever gotten a copy of the chest CT that he had back on January 6th. I wanted to know how long he'd been in such bad shape, hoping it hadn't been that long. He confirmed that they received copies of the scans and his heart was enlarged weeks prior as evidenced by his CT scan on the 6th. I got mad, but he tried to make me feel better by stating that he had to measure to know that it was doubled in size, since Isaiah is such a big guy (he's 6'5")... In my mind I immediately thought, "What? Were all of the rest of his organs also doubled in size so that they wouldn't notice since he was a big guy? Isn't that the point of getting scans?" None of this mattered though. He was in bad shape and he needed to be medevaced to Seattle. It was currently 6am and we were notified shortly thereafter that the flight crew would be assembling at 7:45am. They were moving quickly.

We left the hospital to begin our preparations to fly to Seattle as well. We went back to my parents house, ate breakfast, searched for flights and somewhere to stay. Audrey was supposed to have her 2 week appointment the following day, I had to try to get that moved up. Some incredible friends of ours contacted me and insisted on booking our tickets for us (my mom's ticket and mine). We ran around town like maniacs all day. Audrey's appointment, pick up Isaiah's clothes and wheelchair from the ICU, stop at Costco for diapers, and other miscellaneous tasks. Since Audrey was so young, I hadn't yet started pulling out my pre-pregnancy clothes. Brilliant as I was, I had bagged up clothes as they stopped fitting, and put them in our crawlspace with the intention to bring them out as I began to lose the baby weight. Since I was packing and maternity clothes were now too big, I went to the crawlspace and grabbed a handful of shirts and threw them in my suitcase. We were on the 7pm flight out of Alaska along with many of Isaiah's family.
Audrey's first flight - she did amazingly well
 We arrived in Seattle late Thursday night and went to a hotel nearby to get a bit of sleep before heading to the hospital. Friday morning, one of my aunt's picked up my mom and I at the hotel and drove us straight to the hospital. Audrey was now two weeks old. It was like some sort of twisted deja vu being at that hospital. I knew that hospital all too well. We went up to the ICU to check in with the staff and see how he was doing. He was still in pretty bad shape. They were running tests and scans and would talk to us after they received the results.

Friday afternoon was the first meeting with the cardiologist at UWMC. It was Isaiah's parents, me, and my mom. It was a very bizarre meeting. Essentially, they had to confirm that Isaiah was cancer free. If he wasn't cancer free, nothing would be done. The pump that he had was only good for 5-6 days... Thankfully, as we continued to talk, another doctor popped his head in to let us know that the oncology team confirmed from his scans, that he was free from cancer. Thank you LORD! He continued to explain that Isaiah's heart as a whole, was not functioning properly. The right side was in bad shape, but the left was in FAR worse shape. Which is probably why his liver, kidneys, and lungs were doing so poorly. Since receiving the temporary pump, his liver and kidneys had begun to improve.

Since Isaiah had flatlined in Alaska, they would need to lift Isaiah out of sedation to ensure that there was not significant brain damage before moving forward. Since he had cancer just 6 months before, he was not eligible for a transplant. The plan was to remove Isaiah's sedation. If he was able to respond to commands like he had in Alaska (squeeze hands and wiggle toes on command) by Monday night, then an LVAD (left ventricular assist device) would be placed on Tuesday. If he hadn't woken up enough to prove he hadn't suffered brain damage, then a different temporary pump would be placed on Tuesday. That would give him possibly up to a few weeks to wake up to prove he was okay, and then the LVAD would be placed. We were told that his heart would not heal, at all, ever.

We needed him to wake up.

After that very ugly and difficult meeting. We went back to the ICU waiting room where many of his siblings were waiting (he's the oldest of 8, remember) and I had to fill them in on what the doctor had said. We talked. We cried. We prayed.

He had to wake up.

The rest of that day, we all took turns holding his hand, talking to him, asking him to squeeze our hand or look at us. Nothing. Saturday morning we all showed up at the hospital again to continue to try to get him to respond. As he came out of the sedation, he would cough and move around, but not on command. So it didn't count. While Saturday was a long and difficult day of waiting, it wasn't the last.

**After starting this post, I realized this HAD to be split up into a few parts because it is overwhelmingly long and I'm not even done yet....  I will try to get Part Two up ASAP.**

Napping while mom got us packed up to head to the hospital

Thursday, February 12, 2015

Feeling blessed...

Yesterday morning Isaiah was awake and able to get the breathing tube removed a few hours later. He was definitely in a lot of pain when he woke up, as we had expected. He is seriously such a trooper though. He did everything that the nurses asked him to do, he even spent some time sitting up in a chair! He spent most of yesterday and today just trying to rest. His body has been through so much these past few weeks (months really) so I was very happy to see him get some sleep that was soooo overdue. 

Today, I brought Audrey in for a few minutes to say "hi". I made sure that she wore her Marshawn Lynch jersey today just for him! Today we even began some of the training on this LVAD that he now has in place. The LVAD is quite the remarkable piece of equipment but I can definitely see why it is not a forever type of solution. He will definitely want a heart transplant as soon as he is eligible to be placed on the list (must wait 3-5 years cancer free). 

Until he received a transplant, he will keep the LVAD pump. This pump means that he has a wire called a "drive line" coming out of his right side. This line connects to a "controller" that is powered by 2 batteries or a 10lb box that plugs into the wall. He has to be connected to one of those two sources of power at ALL times. This means no swimming, no contact sports, and no getting caught in a downpour of rain. In order to shower he will need to place all of the hardware in a shower bag (haven't seen what those look like just yet). The 2 batteries combined last about 14 hours so it's not like he can go days before switching to new batteries or plugging in to the wall for awhile. 

Isaiah is really handling all of this incredibly well. I certainly don't think that I would be handling it nearly as well if it were me in his position. I keep telling him how excited I will be when we can go home and just be boring. Eventually that will happen for us, and until then we have an incredible support system to help see us through. 

A few people in our wonderful support system have organized a fundraiser for us this weekend. They've been able to get some pretty cool stuff to auction off! 

Since we left in such a hurry, there are a few things that I really have to go home to take care of since we will need to be in Seattle so long. So while Isaiah is still in the hospital, I will be flying home Sunday morning, attending the fundraiser, spend a few days taking care of a few things, and then back to Seattle on Wednesday.  This will also give me the opportunity to get more clothes for Audrey, Isaiah, and myself. Apparently in my rush to get to Seattle, I decided that all that I needed for myself was 2 pairs of pants, 1 shirt that fits, 5 shirts that don't (yay pre-pregnancy clothes), a pair of sandals (for February haha), and a pair of slippers. Oops!

It is still just so amazing to sit and talk to Isaiah and watch him with Audrey... those are things that at many points recently, I thought might never happen again. He is such a strong man. Audrey and I are so lucky to have him in our lives. :)

Updates on Isaiah

Here are the most recent updates on Isaiah. I know, bad blogger not posting actual posts, but between Audrey and Isaiah and being discombobulated in general... I haven't been able to write up any actual posts. Most recent updates at the top. :)

2/10/15 Updates
Isaiah is safely back in the ICU. The doctor said he did well and the pump is in. Tonight he will rest and we will get to see him awake tomorrow! :) Thank you all for your continued love, support, and prayers.----------------------------Isaiah is officially in the OR now. Should be about 4-6 hours of surgery. Please keep him in your prayers as he takes this huge step toward being healthy and home. It's the beginning of a long road of healing. 
Keep all of us in your prayers too as we wait impatiently.-----------------------------Today is surgery day. Please keep Isaiah and the medical team in your prayers! I will keep everyone updated with how surgery has gone once Isaiah is settled back into his room. Surgery will be this morning... Starting in just a few hours.

2/9/15 Update

Monday didn't quite bring the answers that we'd hoped for... Tomorrow Isaiah will have open heart surgery to receive the LVAD. While we were all very much hoping that his heart had healed enough to simply control everything with medications and not need the pump, we know that Isaiah is getting the care that he needs and this is what has to happen in order to get him healthy and home. 

Please keep Isaiah and the medical team here at UWMC in your prayers tomorrow as it will be such a big day.

2/8/15 Update

Thank you so much for your donation. This will truly be so helpful to us during this crazy and scary time. Also, thank you for your prayers... they are SO powerful. 

2/6/15 Update

Yesterday, Isaiah was able to get out of his room and hold Audrey for a little while. He is in really good spirits, especially considering all of the information that he has had to take in in just a few days. 

I never could have imagined how amazing it would be to see Isaiah open his eyes and look at me again. I am so glad that he is now awake and can participate in the discussions and decisions for his future. 

As of right now, the left side of Isaiah's heart is not continuing to heal at the rate that it was. Because of this, they are going to give him a few more days of healing before they do another scan of his heart. If by Monday, his heart can handle being without the pump that he is currently on, he will be weaned off of the pump and will manage everything with medications. However, if his heart is not healed up enough, he will go into surgery on Tuesday to receive the LVAD pump. The LVAD will require open heart surgery and will be a big change for him. 

After receiving the LVAD, Isaiah will remain in the hospital for somewhere between 2 and 4 weeks and then will need to live locally in Seattle for up to 3 more months. 

While the doctors seem to think that he will definitely need the pump, they were also certain that his heart wouldn't heal at all and that he wouldn't wake up before this last Tuesday (even though he woke up Sunday). So right now we really need to pray that the left side of his heart continues to heal. If it somehow heals enough before Tuesday, he may be able to get the temporary pump removed and not need another pump put in its place. 

Please keep Isaiah in your prayers while he attempts to rest and heal. He still has a lot of healing to do before we can get him safely home. 

2/3/15 Update

Isaiah is back in his room in the ICU. He is doing well. They did end up placing the temporary pump since his blood pressure was too low for comfort after removing the tandem heart pump. We are hoping that Isaiah will be able to wake up and have the breathing tube removed tomorrow. 

The doctor said that Isaiah did great. At this point we pray that Isaiah's heart continues to heal. In the next week or two we will find out if his heart has healed enough to be removed from all pumps or if he needs to have the long term pump put in. At least Isaiah will be able to be awake, see Audrey, and be apart of the discussion about what will happen next. 
Thank you all for your continued prayers. The rest of Isaiah's organs are all doing very well, we just need the left side of his heart to join the party. 

2/2/15 Update

Today was a good day... first thing this morning, I was told that not only are Isaiah's liver, lungs, and kidneys looking MUCH better, but his heart is continuing to heal. (His liver numbers were in the 5,000 range less than a week ago and are now in the 80s... they should be around 50) 

The doctors had flat out told us that his heart would never heal. They told us that his heart function was as good as it was ever going to get (at less than 10%). Yet it is healing! Power of prayer right there. 

Anyway, since his heart is doing well, they have been weaning him off of the current temporary pump and he is tolerating it. They've also reduced his heart medications and his numbers didn't change a bit. 

Tomorrow afternoon the doctors will take Isaiah off of the temporary pump and see how he does. This is something that was 100% off of the table only 48 hours ago. Isaiah is continuing to prove the doctors wrong and they are shocked. 

If his heart tolerates it, he will be treated with medications and closely watched to make sure his heart continues to heal and function properly. If there is even the slightest hiccup during or after the removal of the pump, they will put in the temporary pump. That will allow his heart another week or 2 to heal and then be removed. 

Absolute worst case scenario is now the long term pump. Last we had talked to the doctors, this was Isaiah's only option... and now it's the last option. We are amazed.

We still need some serious prayers for Isaiah, especially tomorrow as it will be a VERY big day, but the prayers thus far have proven to be healing. We were in total shock today when we found out all of this amazing news. We've all seen what God can do but we were just hopeful that the surgery for the long term pump would go well. We never imagined such incredible news would be given to us today. 

Isaiah is such an incredible guy and he is one heck of a fighter. I am still in awe of all of the people who have reached out, said a prayer, made a donation, etc. He is clearly a VERY well loved man. We all sure love him but it is wonderful to see so many people rallying around him. 

God is doing amazing things in Isaiah's life right now... Please continue to pray. Thank you all so much!

2/1/15 Update

We just received news that Isaiah is showing improvement... Even his heart! Which we never expected. 

They finally said that he gave the responses that they were looking for. Good job proving some of those docs wrong, Isaiah! 

And thank you for all of the prayers that made this possible. He is still definitely critical and this will continue to be a long journey so please don't stop the prayers. 

We are just so thrilled to have some sort of good news! On Super Bowl Sunday of all days.

Saturday, January 31, 2015

Heart failure, liver failure, etc.

Here are the updates that I've posted lately regarding my husband, Isaiah. The most recent updates are at the top.

1/30/15 Update
Today was a day full of waiting. Numerous tests and scans were done today. 

At this point we are waiting for Isaiah to wake up from his sedation. If he has done this by Monday night, he will receive surgery for a LVAD on Tuesday, which is essentially an implanted device on his heart to help it pump. This is a long term solution. He could potentially receive a heart transplant once more time has passed since his cancer surgery this past September. 

If he has not woken up by Monday night, they will put in a temporary version of the LVAD. This would allow extra time for him to wake up. 

The LVAD will likely require about a month in the hospital post op and 3 months living locally in Seattle. 

Thankfully, the time he is spending on the tandem heart, is helping the rest of his body to heal, especially his liver. 

So for now we wait. We do not know what more God has in store for Isaiah... All that we can do is pray. God has a plan and we must do our best to remain patient in the meantime.

1/29/15 Update
Prayers are desperately needed for Isaiah right now. He had a bad night/morning. Some of the medications, while improving part of his condition, caused his heart to begin beating very rapidly. They shocked his heart to get it going properly again. This happened twice last night at which point he did flatline but was brought back via CPR which the doctor described as "very brief" as far as how much CPR was needed. 

A few hours later the doctors called me in to the hospital to discuss a procedure called a tandem heart (not even close to what it sounds like but it was needed). While they were getting this done, his heart decided to go crazy again and needed to be shocked. He did very well and responded properly to the procedure itself. 

He is currently being flown to UWMC in Seattle where they will evaluate him and determine the next step. We (family) are on our way to Seattle today and tomorrow to be with him however he is thankfully sedated to keep giving him time to rest and no time to worry. 

This is going to be a long process and recovery. We will likely be in Seattle for weeks. We know that UWMC is the best place for him right now and he will be in amazing hands there. 

Please continue to keep all of us, particularly Isaiah and his heart, liver, and medical staff in your prayers. He is such a strong man and I know he's just trying to become bionic somehow. Isaiah is an incredible man, husband, and father. I so can't wait to get him healthy and home where he belongs. 

We are truly blessed to have so many wonderful people in our lives. You all mean so much to us and the love and support we've received is overwhelming. I love you all. 

Keep up the prayers!!!! Thank you so much!

1/28/15 Update
Just spent some time in Isaiah's room... He was responding to the nurses commands to open his eyes, squeeze my hand, and wiggle his toes. He was also asked if he was in any pain and he shook his head "no". Which is very exciting since he's not on any pain meds right now.
We got some more results a few minutes ago. His heart and liver have been failing since being admitted and they've really been watching his liver enzyme numbers because if those numbers don't improve, they will have to intervene. Thankfully, we just got some blood test results and his liver enzyme numbers have improved dramatically. The cardiologist was very excited by the results. The levels are still nowhere near normal but if they continue to trend in the right direction, he will be normal in no time! We have to keep praying that those numbers continue to improve. 

Also, they took him off of sedation this morning and he's been doing well so far. Responded to the nurses earlier when they asked him to squeeze their hand and open his eyes. He's just so tired, he doesn't seem to want to wake up just yet. BUT he's still tolerating it well.

Keep those prayers coming because they are working!
Isaiah's doctors are happy to see some of his numbers improving. He's been taken off of one of his heart medications and he is tolerating it well. While he's still intubated, they have taken him off of the ventilator to see how he's breathing on his own and he's been doing well. His liver is not doing well however and he is still in heart failure. 

There are a lot of steps that can be taken if things do not improve but hopefully none of those options will be necessary. Especially since absolute worst case involves sending him to Seattle again. While he loves Seattle... He would be very unhappy to wake up at University of Washington Medical Center. That is one place he swore he never wanted to see again.

1/27/15 Update
Isaiah update: Everyone is heading home to rest for the night per the doctor's orders. Some of his numbers are showing improvement which they find encouraging however he is still in heart failure. I can't thank you all enough for the prayers and reaching out. It truly means so much to all of us. Prayer can do amazing things and I hope that with tomorrow comes some miraculous news. 

This poor guy's body has been through so much this past year and I had truly hoped that 2015 would be a year of recovery and health... Guess that just has to start in February. Let's get this guy healthy and home ASAP.
Another update. Isaiah is in the ICU and his heart is not doing well. We are waiting for more test results but we don't know much. Please continue prayers as he needs all of the strength he can get.
As quickly as I posted the last update, we have another update. The doctors are moving quickly with him. Apparently Isaiah has deteriorated just since being admitted this morning. They are going to be sedating and intubating him in order to force him to get some rest and breathe properly. While he's in the ICU they will be doing some additional tests to see what exactly is going on with his lungs in addition to the pneumonia. 

It is a terrible feeling to get the call with this kind of information, but thankfully Isaiah's parents are with him at the hospital right now. After answering all of the doctor's questions and getting all paperwork filled out, I left the hospital to take care of Audrey. The ER and the ICU are not the best places for a healthy newborn. 

Isaiah's body so desperately needs some rest. Hopefully, they will get everything figured out and by the time he wakes up, he will be feeling like a new person.

In December we noticed that he was having more and more difficulty with sleeping and had started to have more difficulty with breathing. After this was clearly not going away on its own, Isaiah mentioned it at one of his doctor appointments. A CT scan of his chest and an ultrasound of his right leg were ordered. They wanted to see what was going on with his lungs and also make sure there were no blood clots. 

Unfortunately the tests showed that he did have a few clots in his right leg, for which he was put on blood thinners... not too bad. While his CT scan showed no signs of blood clots in his chest, they did see that he had something going on with his lungs... most likely double pneumonia (according to the radiologist, this is very common in radiation patients and patients who have had such a major surgery and kept very immobile post op). 

The one good thing that came out of this appointment was the fact that he was finally cleared to start putting up to 25% of his weight on his right leg. FINALLY! 

After his antibiotics had run their course, we noticed that his breathing was not getting any better. 

On January 16th, we welcomed our beautiful baby girl, Audrey, into the world, but Isaiah's condition seemed to only be getting worse. He was insistent that he was fine and tried to keep focus on me and the baby even though I offered to get him admitted and ask to share a room haha. He did finally call his doctor and get an inhaler to hopefully help with his breathing while I was admitted to the hospital, but this brought no change to his breathing. 

After a week of continued deterioration, we went back to the doctor with additional symptoms. Not only was he having a very hard time breathing, not sleeping, but he was also coughing like you wouldn't believe and throwing up so often that he was unable to keep down food, water, or even his medications and vitamins. Blood work was done and another CT scan was ordered. 

Yesterday we received the results from the CT scan. His lungs are looking worse than before. The doctor consulted with a lung specialist who wanted additional blood tests and to see Isaiah in his office today. Off we went for more blood work in the below zero weather. 

All night he was coughing and throwing up. He continued to have difficulty breathing and didn't sleep. This morning we made our way to the hospital instead of waiting for the results from the additional blood tests and the appointment with the specialist. He was in too rough of shape to wait any longer. 

Sure enough, he is extremely dehydrated (big surprise) and after looking at some chest X rays, the doctors are thinking it is definitely pneumonia. Unfortunately, he will have to stay in the hospital... they are just waiting to determine if he should be put in a regular room or the ICU. 

Thankfully, Isaiah is fully aware that this is the only way that he is going to get better, and he isn't fighting the process. Anyone who knows him knows how much he just looooooves hospitals :/ 

While we are very happy that he is being taken care of, it is so hard to watch him be in such bad shape that he has to go through another hospital stay. 

Hopefully the doctors are able to get him on the perfect combination of medications so that we can get him healthy and out of the hospital as soon as possible. 

Please continue to keep Isaiah in your thoughts and prayers... the poor guy most definitely needs it.