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Tuesday, May 19, 2015

Still Going Strong!!

Thankfully, we are still bleed free since Thursday at 2:30AM!! We are so thankful that this is the case!! We now are getting back to his CF tune-up, and going to see what happens regarding the bleeding. They can't tell us why it stopped on its own, and they can't tell us if it maybe just healed on its own. They also can't make a guess as to when/if the bleeding will start again....5 days or 5 years. So here our current plan of action:

- Ease back into treatments - Today Ronnie will start his vest, on a very light setting. In a couple days, he will start inhaled antibiotics (which antibiotic is still TBD), and then Pulmozyme (that will be last added back since literature does note some hemoptysis with it).
- Hypertension medication - He doesn't have hypertension, but some other docs they consulted said that they have found it can help with the bleeding by lowering the heart rate. So we are giving it a try.
- Switch from Tranexamic Acid to Amicar Syrup - Tranexamic Acid helps clot your blood, so he's been on it. But it's not a great longterm option. So they are going to switch him from that to Amicar Syrup, which apparently works by a similar mechanism, but isn't as potent.
- 2 weeks of IV antibiotics - One of the teams Ronnie's team consulted with said this is their standard treatment post-hemoptysis. So they are going with that.
- Hemoptysis Guru review scans - We are having a Dr. from the University of Washington review Ronnie's IR scans, as well as their IR team, to see if there's anything that was missed or something they think they could do, proactively. This was the team recommended to us by our CF team after they asked around and researched to find the best to deal with this specific situation.

Right now we are working on managing lung pain, building strength, and working through feeling like a ticking time bomb. We are all doing well. Just taking each day as it comes! We are eager to get back to normal tune-up mode and then normal life mode. We inch closer every day, so we are thankful for progress. Please join us in praying for a continued lack of bleeding, strength that grows exponentially each day, increased appetite, and daily progress!

Saturday, May 16, 2015

2 Days and Counting...

We cannot thank everyone enough for all the support shown over the last couple days. It has been a nutty ride.

Currently, we are in limbo. Ronnie has not bled since 2:30AM on Thursday morning...so we are over 2 days without an episode of hemoptysis. PRAISE GOD!! We are so thankful for a break in the chaos. After the news Thursday evening that embolization was unsuccessful and was not an option at our hospital at this time to block that particular vessel, we spent yesterday seeking second opinions on what to do to stop the bleeding. However, now that we have made it this long without a bleed, we are now holding off on moving forward with any of those options and leaving Ronnie where he is in Tucson, at least until we know if the bleeds will start again or not. We aren't sure what has aided the bleeding to cease...I believe all the prayers have helped. After the embolization on 5/7, the bleeding did cut down by about 2/3 over the next 24 hours (so we know they got one of the trouble areas), and then dropped off a little more, staying steady at about 75-150ml a day from Sunday through Thursday of this past week, when he had another "little" bleed of around 75ml at 2:30AM. But we haven't seen any bleeding since.

So now we wait, patiently and prayerfully, before seeking any more opinions or options.

He is still really weak. He is functioning with about half as much blood in his body as he usually has. Also, he is on some pain meds to keep his cough a little suppressed, in an attempt to let whatever was bleeding in there heal. We have been able to cut his pain meds by a considerable amount, so he isn't fully sedated and is coughing some in order to start clearing some of the junk out of his lungs that has pooled there over the last couple weeks, but they are still keeping his cough suppressed to an extent. He currently isn't doing any treatments (again, to try not to cough up whatever clot maybe formed to stop the bleeding), apart from an albuterol/atrovent nebulizer 4 times a day. He is getting out of bed here and there, but due to the lack of blood in his body and nausea, doing much more than standing has been a bit much. We are hoping that the bleeding is done and that he can just rest, in order to get back some strength and heal.

Our major prayer for now is that the bleeding won't come back. We have no idea why/how it has stopped, but we will prayerfully ask God to keep it that way. He will bleed again at some point, we are just hoping it's not for awhile and that it's not as much as it has been. We will get things in place in case he does bleed again, but have stopped the frenzied hunt for a set plan, as we will not move forward with any of our opinions as long as no bleeding is occurring. We have stopped looking for second opinions now as well, until we know if we will need to do anything right now or not.

We so appreciate all the support and help. The best way to help right now is via prayers!!

Friday, May 15, 2015

The Beauty of Second Opinions

Unfortunately, yesterday's fifth embolization was not a success. There is one last massive vessel that looks like it could be causing the remaining bleeding. They have tried to access that vessel both last Friday and yesterday, but they cannot get to in a way that they can safely embolize it. It's in a less than ideal location, off the subclavian artery, that makes it risky if they cannot get exactly where they need to be to release a coil. As of now, our hospital's IR team seems to think they cannot do it, and is suggesting a transplant. We do not feel that the logical next step is jumping to transplant...seems like we should work a little harder to fix his current lungs (which sit at 72% lung function as of two weeks ago) before ripping them out and throwing in new ones. For us, we believe second, third and fourth opinions, off site, are necessary as other teams at our hospital, like thoracic and vascular surgery, are unwilling to take the case (at this point). Additionally, we would not choose this hospital to be transplanted at, so all in all, this isn't the right place for us for any of our next options, as much as we love our CF team.

So right now we are seeking second, third and fourth opinions from different docs/hospitals across the country to get their thoughts on logical next steps. We believe that sometimes it just takes the right person with the right skills and knowledge to fix certain problems at the right times, and do not believe that this IR team is the best we can find to fix this problem. We are so thankful that things have settled a bit and that the bleeding is so much less than it was, giving us the luxury to look around for second opinions while it is not life and death. We are choosing to rejoice in small victories, like that, as we continue down the road to recovery...hopefully with his lungs!

Specific Prayer Requests:
- No more bleeding. Boom. I said it. Let's just get bold and ask that God does the healing. We know that our God is big. We know that He created the very process of clotting. Join us in boldly asking God to clot off the area the blood is coming from.
- Good second opinions. We don't care what they are, we just want options. We know that God has gifted people in very unique ways. We are hopeful we can find the person who God has specially equipped his/her hands to fix this problem.
- Peace and patience. We understand that much of this is out of our control at this point. We will continue to do what we can, and pray that we feel at peace about what decisions and next steps we need to take.

Thank you for joining us, arm-in-arm, on our journey. Prayers are the best way to support us and the best medicine!

Thursday, May 14, 2015

Thankful Thursday: We can always be thankful!

Though things have been chaotic and a bit unpredictable, we still have an abundance of things to be thankful for.

We are thankful for family. Our families have rallied around us in a way we can never repay them...though my dad jokes one day we will (I'm wondering if the task of changing adult diapers is in our distant future. Ha!) My parents have stepped up and taken on full kiddo duty...for over a week now. They have rearranged their schedules, given up their sleep, and showered our little ladies with so much love and care. Ronnie's mom has been sharing hospital duties, sharing decision making, and overall being supermom to her son...and me. Ronnie's siblings have helped with kiddos when they were down here. His brother has been by, brought food, kept us company, etc. We couldn't be more blessed by the family we have.

We are thankful for medical care. Though our medical system isn't perfect, and definitely not a well-oiled machine, it is not lost on us the true blessing it is to be able to be treated in a hospital, full of well-educated people, completely paid for by our insurance. Without any of those three things, we would be in big trouble. And by big trouble, I mean big, big trouble!

We are thankful for possibilities. Today Ronnie will go down to Interventional Radiology (IR) for his 5th embolization this stay to try to stop the bleeding. This is our first defense. We are prayerful that this will be the last needed measure. Please join us in praying for this procedure to go well, and that it stops the bleeding. But if it doesn't, we are thankful that there are additional options. Don't get me wrong, the next options kind of blow, but we are hoping there are even more options than we have even been presented. But for today, we are thankful for the IR option, and are thankful that we have hope if the IR option isn't the solution.

Again, please join us in praying for Ronnie's procedure this morning. He is supposed to go in mid-morning Arizona time. Pray for a successful procedure...one that is without hiccups and that fixes the bleeding. Our God is good and His plan is perfect!

Wednesday, May 13, 2015

"Cast My Cares" - Finding Favour

God always seems to have a way of speaking to me through songs. It seems like during difficult times in my life, He puts a new song on the radio I've never heard, or we sing the perfect song at church. This recent bleeding saga Ronnie has had is no exception. On Thursday afternoon I left the hospital for the first time in a couple days to go shower while Ronnie's mom stayed with Ronnie. I had hit a bit of a breaking point, was exhausted, frustrated, scared and emotional. I left to shower...hoping to clear my mind a bit. When I got in the car, this song was on the radio. I had never heard it, and it was exactly what my soul needed at that moment. Enjoy!


Tuesday, May 12, 2015

As the dust settles...

We are making progress. Ronnie's bleeds have slowed, and so has talk of intubation, lobectomies and transplant. Ronnie went from having between 1000 and 1500ml of blood in a 24 hour period, to around 300ml, to now 50ml for the last 2 days. He has gone from being heavily sedated (barely talking or moving) and remembering nothing beyond the last 10 minutes, to sitting up in bed and reasoning through what relationship his nurse's great aunt's dad would be to said nurse. We are feeling so blessed by the progress. But we are still concerned. There is one more area they know will cause him trouble, and the question now becomes do you go in and fix it or see if it will fix itself for a time. Ronnie is concerned he will leave feeling like a ticking time bomb. I am concerned I will be faced with an emergent situation at home, alone, with two kids. But for now, we are thankful that we didn't have to throw him onto an OR table like it sounded we would have to as of just a few days ago. Our God is so good and has been holding Ronnie close. Decisions are still there, needing to be made, but thankfully they can be made slowly and thoughtfully.

Ronnie did receive a blood transfusion of one unit of blood. His hemoglobin levels dropped to a point (levels were 5.5) that there was no choice, it was something that had to be done. This may end up having implications in the future when/if he needs a lung transplant, but it was the right and necessary decision for today, and we trust that God's plan already has it factored into the future in a way that is best for Ronnie.

That's the health side of things.

As for the rest...I'll be honest...Wednesday, Thursday and Friday were nerve-wracking days. There were some tears and a lot of fear. There was also a lot of thankfulness mixed in. We felt thankful for our families and support system. Every time Ronnie would have a moment of lucidness, he would say how thankful he was for his mom and my parents, who have stepped in in a huge way! As for me, I was so thankful to have our kiddos with my parents, and the strength of Ronnie's mom by my side (I will right a whole blog on this later).

But above all, though there was a lot of uncertainty and fear (watching a bleed of 400+ ml an hour after a 200ml bleed can rattle even the most seasoned docs), I think this may be one of the sweetest times in our marriage and as a family. Ronnie is always the rock. Ronnie is always the steady eddy. Ronnie always takes care of everyone else. And for the first time in our marriage, I got to be that for him. As many know, pain meds can really skew a person's mental state (hallucinations, weird/vivid dreams, anxiety, you name it). And Ronnie was himself in some ways, but in others, he wasn't Ronnie at all. He couldn't remember enough or piece together enough to put together the big picture. He woke up Friday having no idea that things had settled and that no one was listing him for transplant. He likes to feel like he is in control when it comes to his health and specifically his health care decisions. So having to turn that over to his mom and I was a place that made him feel vulnerable. But I think it also was a good reminder that none of us are really in control in some situations. That sometimes you have to trust that God is in control at that very second. As he was in the middle of his biggest bleed Wednesday night I could tell he was frustrated and scared. He was barely able to keep up with the rate the blood was coming with his coughs to clear it. The suction certainly couldn't keep up with the rate it exited his mouth. We sat catching the excess in anything we could grab: towels, wash cloths, bed sheets. We were all scared. Doctors and nurses didn't even try to mask it on their faces. And in that moment Ronnie and I just locked eyes, between coughs. I just calmly told him "God is in control and this is his plan;" "We are walking His plan;" "It is ok;" "You're doing a good job;" "No big deal." His fearful eyes would agree as he would give a tiny head nod. Over and over I would repeat the words. When I would see the anxiety build in his eyes I would say, "close your eyes. Quiet and calm. No problem. Quiet and calm. Quiet your mind. Calm your body." And as much fear as I know I felt then, now I simply feel grateful for that sweet time. Not many things we will experience as a couple will bring us closer than that moment. For all the stress, I now look back on those 3 days as one of the sweetest periods in our marriage. I am so thankful for the growth that can come in hard situations. And I know in years to come, we will look back on this week as one of the highlights of our marriage!

Sunday, May 10, 2015

One Heck of a Week

Ronnie last updated almost a week ago. It's been a bit chaotic since. I'll give a brief version of events. When things settle, we will update more, and fill in the gaps with more details.

Tuesday night (technically Wednesday morning, I guess, because it was at midnight), Ronnie started having another bout of hemoptysis, so they moved him back to the ICU. Things Wednesday, Thursday, and Friday were a bit hairy. He coughed up about a 1000ml on Wednesday into Thursday and a little less than that Thursday into Friday. Friday it dropped off to about 300 for the day, and same with yesterday.

In order to try to tame the bleeding, they brought Ronnie back to the IR for embolizations. They brought his in Wednesday night, but he had more bleeds within an hour of coming back up to his room (and continued to have episodes throughout the night...one of which was about 400ml). They brought him back into the IR on Thursday morning. Thursday morning they got another area or two, and that seemed to really slow the bleeding down. During Thursday's procedure there was one additional area they wanted to embolize that they couldn't get to, and he had had enough contrast and radiation for one day (especially compounded with having another 2 within the last week). So they planned to bring him back in Friday to hit that last area. Unfortunately, Friday they were unable to get to the area in the way the needed to release the beads they use to embolize, so after 4 hours of trying, they called it. He continued to bleed Friday, but it was slowed. The volume was less, and each episode it seemed to bleed slower and didn't come up to violently. Friday afternoon they decided to try to get to that last "problem area" this coming Wednesday, from a different access point (arm vs groin). So this weekend we have just been biding our time. The bleeding has improved. He only bled Saturday morning and late afternoon, again this morning, but not enough to measure, and then again late afternoon, but only about 50cc...so he's only at a little over 50 for the day! We will take it.

They have kept him pretty heavily sedated on pain meds in an attempt to keep him still and his cough quiet. It usually isn't ideal for CFers to not cough, and it's not ideal in the sense that he probably has a ton of mucus sitting in there right now, but they have decided to manage the bleeding first, and worry about clearing the mucus second. Also, his hemoglobin levels dropped into the 5s, so they transfused him with a unit of blood, in an attempt to get his numbers back up a bit to prevent organ failure, etc. Of course we wanted to avoid this if possible, as to not cause potential issues down the road with being harder to match for transplant. But once he dropped into the 5s, there was no decision to be made, it just had to be done.

It has been an interesting week to say the least. I came down Tuesday night when the bleeding started. His mom and I spend part of the day both here, and part of the time taking shifts so the other can go shower, get food, etc. He was so snowed on pain meds that he needed someone to hit his call button if he started to have a bleed, and then to help during it by catching spraying/rolling blood that he couldn't catch with his suction thing (I don't know the name of it and don't plan on needing it long enough to learn it!) The girls have been at my parents house most of the time. My mom dropped them off in Tucson on Friday afternoon and my parents picked them up earlier today, so we got to see them a bit, which was nice, but a bit too much of a juggling act. I tried to limit Mckenna's exposure to the scene for the most part, as she is VERY comfortable with medical stuff and blood, but one of his big bleeds would be a bit much, I think...especially the way people run around and some of their poor attempts to mask emotions on their faces (come on people, you're professionals, get it together!) But we did have her come to the hospital for about an hour on Friday and again today for about an hour and a half. Nana, Papi and Grandma all take turns going on mini adventures around the hospital to break up the time. Friday he was really out of it, barely waking up, and I think it took her back a little...even though she knew he was just sleepy from the meds. Today Ronnie has been the most alert, so it was a good lasting snippet for Mckenna to have linger in her brain. She is a smart little girl who reads between the lines, so it's a balancing act. No exposure for a few days and she was verrrrry skeptical, too much and well, it may be too much. We had some interesting conversations (more on that in another blog) that gave me insight into her fears and her brain. For today's visit I prepared her for the mask she would see on him (just oxygen, but via mask with a massive tube to it) by talking about him looking like a scuba diver ("just wait...it's so silly..."). We looked at pictures of scuba divers and then made him flippers for his feet out of an old box and jelly fish for his wall out of coffee filters. That seemed to do the trick! He rallied enough to kick his feet like he was swimming in his flippers.

There are a lot of missing details in there. It's all a bit jumbled in my brain as it is, and a lot to type. There was a lot of chaos Wednesday, Thursday and Friday surrounding treatment options and solutions. We were visited by a surgeon about a potential lobe removal and transplant docs about transplant (yes, you read that right, we were shocked too...I think they were a bit trigger happy!! Thursday they came in guns blazing at 6:30AM...I think it was a case of an overzealous new ICU doc). Of course things like intubation were thrown around. But thankfully things have settled, and we have chosen to take days in 12 hour chunks. Ronnie felt like Wednesday felt really far away, so we just started focusing on the next 12 hours. We are hanging our hats on Wednesday for now. If it's not successful again, we will regroup. But for now we aren't worrying about anything the the next 12 hours and getting to Wednesday with minimal bleeding.

We would love prayers. Prayers for physical and mental strength and stamina for Ronnie. Prayers for peace and sound decision-making for his mom and I. And prayers for the team of doctors and nurses treating him. Our prayer for them is that they will be calm, collected, competent and confident.

I will continue to post updates now that the dust has settled. We will go back in fill in the blanks as time permits!


Monday, May 4, 2015

Hemoptysis in the Hospital

This has proven to be a different kind of hospital stay for me so far. Many of my stays are exactly the same in terms of how I feel coming in and how I feel going out. I have the usual chest tightness, increased cough, increased sputum, decreased energy, and the list goes on. Generally, I come into the hospital not feeling great in the first few days always have me feeling even worse due to the poison antibiotics running through my veins. After the first few days I start to incrementally improve over the course of the next two weeks usually to be discharged feeling like a million bucks.

This stay started out like so many before it but a recent turn of events have made it unlike any other.

On Wednesday night I was falling in and out of sleep watching Netflix. I woke up around 12:45am or so and decided to put the head of my bed down to be a little more comfortable. And then it happened, a feeling that many of my fellow cysters and fibros the world over recognize, the rattling of the chest and the gurgling in the throat. I knew immediately what is happening as it is a sensation I have felt many times before.

Only a representation of what I remember it looking like :)
I got out of the bed and walked into the bathroom and spit out a mouthful of bright, red, fresh blood directly into the toilet. I proceeded to cough up a generous amount of blood into the toilet before turning to the sink as the blood splashing upon the toilet water and dripping onto the floor was not painting a pretty picture. At this point there was blood on the toilet seat, on the floor around the toilet, in the toilet and on the walls near the toilet. As I was transitioning from the toilet to the sink I let out a cough that I couldn't quite hold in and blood spattered on the faucets and wall behind the sink. I leaned over the sink turned the water on and tried to clean as I coughed. I was doing my best to not get the blood everywhere, as evidenced by my hands which were now covered, but my attempts failed as the bathroom looked like a murder scene and I was the prime suspect.

In between one of my coughing fits I managed to press the call light to try to get some assistance. At this point I was feeling a bit lightheaded and worried that I wouldn't be able to stand much longer. I can't imagine what my nurse thought as she walked into my room well after midnight not finding me in my bed but instead covered in blood in my bathroom. If it's any indication her first words were, "Oh no!!"

Within minutes there was a rapid response team in my room. I stayed in the bathroom until the blood ceased and when I walked out and saw 8 people standing in my room or immediately outside of it and I said, “It's not that big of a deal guys!". I was sat down in the chair and the questions ensued.

Yes, this is happened before.
No. There hasn't been this much blood since 2009.
Yes, I feel lightheaded.
No, I don't feel dizzy.

Since the active bleeding stopped and my vitals did not look alarmingly bad, they just decided to order an x-ray and different blood panels.

On Thursday morning I felt like I had coughed up a lot of blood the night before.  I had body and joint aches and my lungs were experiencing a bit of pain.  I also sat up for the rest of the night as to try and avoid another bleed.  The rest of the morning was normal with doctors coming in and out of my room and breakfast nourishing my body. Then around 1:30pm or so, it happened again.

This time I grabbed a nearby bucket that they had given me the night before as I new they would want to get a measurement. The rapid response team was again called and as a result of my prior history and the fact that I had coughed up an additional 100 mL on top of the estimated 150 to 200 mL the night before, I was sent to the ICU for observation. They wanted to be sure I was in a place that I could get immediate attention if a massive hemoptysis visited me again.

After consultation with the pulmonary team and interventional radiology it was decided that a bronchial artery embolization (BAE) was needed. I've had two of these procedures in the past, once done to both lungs and once done to only one side (forget which one). I was admitted to the ICU on Thursday afternoon and wheeled down to have the procedure on Friday at 5 PM.

Not my lung. My bleed was from my left BA and they used foam and beads.
The procedure took about two hours to complete and according to the surgeon's notes and also the fact that I have not coughed up any more blood, it seems to be a success! I can will bleed again in the future and just pray that it will be at least another 6 years before it is an episode that needs to be addressed.

I was moved back to my regular floor late Saturday night and I'm very grateful to the ICU nurses who took care of me, the interventional radiologists who did my procedure, all those involved on the rapid response teams, my nurses and techs on 3NE, my pulmonary and CF teams, and all my family and friends.

Side Note: I have to brag a little bit about my family support. Mandi was at our home in Chandler when the second episode of hemoptysis occurred.  In fact, she happened to FaceTime me as I was holding the bucket of blood. The concern on her face was of course expected and immediate. I told her not to worry and that I would call her with an update. Before I had the chance to call, she let me know that the girls and her were on their way up to meet my in-laws at a halfway point between our houses. Eric and Nancy didn't think twice about taking the girls for an unknown period of time even though they had just picked up dear friends from the airport who were in town for a visit. I am so very grateful. I'd be remiss if I didn't mention that my wife ended up driving back to Phoenix the next day to get the girls and bring them back down the very same day. They arrived shortly after my procedure and were with me while recovering (Friday night) and the entire weekend. When my wife wasn't by my side, my mom was. And finally, I received many texts and prayers of support from my family and friends.

And finally, honor and praise to my Lord and Savior Jesus Christ who guided the hands of the IR team, protected my wife on the roads and sustained my health and spirit throughout the entire process. God is always good.

Sunday, May 3, 2015

22 Weeks Pregnant!


How far along: 22 weeks pregnant...well on the day this is posted, I'm 22.5...but I took the picture on Thursday, exactly 22 weeks. Due September 3rd!

Gender: Officially a baby BOY!!


Total weight gain: Up 10.5 lb.


Exercise: Unfortunately, my exercise plans for this pregnancy look very different. Between the subchorionic hemorrhage and the complete placenta previa, I have been limited to just walking. However, this week my placenta has moved, so I was cleared to do light jogging and weights, so I jogged twice this week. It felt AMAZING!! Shockingly, I wasn't winded and I had to hold back. I'm hoping that my placenta continues to move, and I'll be cleared to get back at it!!


Maternity clothes: Still no maternity clothes. I live in workout clothes, dresses, and the pair of normal shorts I bought a couple sizes up.


Miss anything: This isn't pregnancy-related, but I'm missing my hubby. We are 2 weeks into his hospital stay, and I miss him!


Movement: I'm feeling this little guy move all the time. He's an active little bugger. I love it!


Have you started to show: I think so, especially at the end of the day. I'm pretty sure anyone that sees me would guess I'm pregnant, unless I'm holding Baby N, then it's debatable if it's just a lingering baby bump from the 5 month old in my arms.


Stretch marks: This is a tricky one. I never got stretch marks on my belly with Mckenna. But ever since puberty I've had stretch marks on my thighs, tush, and hips. They are very fine and you only really see them when the light hits them right. So there's a good chance that I got more with Mckenna, I just have no idea. My guess is I may be getting more as we speak, I just can't see them in comparison to what is already there!


Belly button in or out: It's in...and looks like a massive goiter in tight shirts.


Wedding rings on or off: On, when I actually wear them! I take them off for exercise, showers, and sleeping...and with my baby brain and pregnancy brain, I often forget to put them back on!


Sleep: I sleep like any other mom with a 3.5 year old and a 5.5 month old! I have been a little more tired the last couple weeks, but I think just from single-momming it!


Labor signs: None. I'm hoping none for a very, very long time. But I am having noticeable Braxton Hicks contractions already. I get them when my bladder is full, during exercise, when he's really active, and for no reason at all...so really, I just get them all the time.


Best moment of this week: This week we had an ultrasound to check on my complete previa - to see if it had moved since our ultrasound 4 weeks ago. The ultrasound tech (4 weeks ago) said that she didn't know if it would move, that the end of it looked pretty "fixed." Studies show that complete previas are the least likely to move by delivery, so I wasn't very confident that it would move very much in 4 weeks, or delivery. But ever since that ultrasound I was praying, boldly, that at this ultrasound the placenta would have moved, and not only moved, but that it would only be a marginal previa. It was a bold request, but I know our God can do anything. Well the ultrasound showed my placenta moved...and not just a little. And it's not even considered marginal...it moved more than that! It now is considered a low lying placenta. It needs to move more for me to be totally cleared on my activity restrictions and to deliver vaginally, but there is plenty of time...so it's looking good. GOD IS SOOO GOOD!! 

Thursday, April 30, 2015

Thankful Thursday: Placenta Previa & Good Friends

It's thankful Thursday time! 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. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I’m thankful for a God who answers prayers! At 12 weeks we found out her had a placenta previa. At 16 weeks we were told it was partial. At 18 weeks we were told it was a complete previa. Complete previas come with complications, and are the least likely to move before delivery, making a vaginal delivery off the table, and can lead to some issues. The ultrasound tech at 18 weeks said she would be surprised if mine moved because it, in her words, looked pretty fixed on the end covering my cervix. WELL FORGET SCIENCE AND STATISTICS!! I have been praying that God would work a miracle and move my placenta from a complete previa to a marginal previa (just touching the end of the internal part of the cervix) by this visit. It statistically was a long shot, but I was bold and asked. Yesterday, we found out that my placenta had moved…and wasn’t even marginal, it’s now not touching the internal OS (internal part of the cervix) at all…it’s moved away by .6cm - making it considered a low-lying placenta. It’s still too close to the cervix to deliver vaginally, but as it is now, and the fact that it’s moving, means it should move enough before delivery to allow for that option!! GOD IS SO GOOD!!

I’m thankful for Dunkin Donuts breakfast sandwiches. They are seriously SO good!! ‘Nough said!

I’m thankful for good friends. My girlfriends have helped so much with hospital stay with watching the girls and playdates! It has really been a major sanity saver!!

Ronnie's List:

I’m thankful for a good report from the OB! Mandi's complete placenta previa has moved and they are confident that it will move the required amount to safely have a vaginal delivery. For those who don't know, Mandi is one of those weirdos that absolutely loved giving birth...without even a tylenol to help mask the pain.

I’m thankful for increased lung function. After my first week in the Hole, my FEV1 has increased from 63% to 72%. Now, I'm just waiting for my lungs and body to catch up with those numbers and hopefully spring out of this place sooner rather than later.


I’m thankful for a time and a place. I had a pretty large episode of hemoptysis last night and I'm thankful that it happened here at the hospital. I coughed up around 1 cup of bright red blood (the bathroom looked like a murder scene) and it left me quite light-headed. A rapid response team was in my room in a matter of minutes and took the proper and necessary steps to ensure that I was stable. Glad it didn't happen at home!


What are you thankful for today?

Tuesday, April 28, 2015

Tune-Up Shopping and Packing List

I was asked last week what I bring to the hospital, or at least what I brought this time, so I thought I would share my "shopping list" and packing list. Let me know what we have in common or what I need to consider bringing next time!

Clothing:

I usually pack around 7 "outfits" and they will last me my entire stay. Worst case, my mom lives in Tucson and is always willing to do a load of laundry for me. I wear nothing but t-shirts and athletic shorts, but always make sure to pack a sweatshirt or long-sleeved shirt in case my room is unusually cold. I also bring a pair of slippers, a pair of sandals and a pair of running shoes. Also have my hat for those crazy hair days.

Toiletries:

Again, I bring the usual stuff like my own toothbrush, toothpaste, shampoo and comb. Something I bring that others may not is my own bar of soap. Hospital soap sucks. I bring it in a little travel case so I don't have to worry about it touching down in the shower. I also will bring chapstick or vaseline as I always seem to get cracked lips in here.

Not really toiletries, but related, I bring my own bath towels and bath mat. Hospital bath towels are about as absorbent as a duck's back.

Bedding:

I bring my own pillows with pillow cases as well as my own comforter. These get washed as soon as I get home and stored for the next hospital stay.

Electronics:

I of course have my phone, headphones and laptop, but what I bring along that most others don't is a separate monitor to make working easier in the Hole. I use two screens at home when I work, and with what I do, it makes it much easier. Anything I can do to make work easier from the Hole, I will do as it is already hard enough!

I also bring my own single cup Keurig machine to brew my own coffee while here. The coffee that the hospital sends up is always puke-warm and watered down.

Funny thing is that I bring my Playstation 3 but only set it up about a quarter of the time. I never have it set up at home and always think I'll have the urge to play it when I come in here, but it rarely happens. I always bring it just in case.

Food:

This will probably just be easier to list. This doesn't include all of the candy I bring and that is brought to me, but I did include sweets that I "need" in here. I have a major sweet tooth that only amplifies when getting a tune-up.

Dried Mango
Oreos
Walmart Brand Oreos (for a taste test)
Fruit and Nut Medley trail mix
Gummy Bears
Cinnabon Cereal
Golden Grahams Cereal
Boom Chicka Pop (kettle corn)
Jelly Beans
Random Assortment of Candy (Starburst, Skittles, Laffy Taffy, Bottle Caps)
Gevalia Coffee k-cups - Colombian
Donut Shop Blend Coffee k-cups
Green Mountain Coffee Nantucket Blend k-cups
Gallon Jugs or Water for Keurig
Original Coffee-mate Coffee Creamer
French Vanilla Coffee-mate Coffee Creamer
Equal

After I get admitted, my mom and brother always bring by some of the stuff listed above as well as plastic silverware, plastic bowls, coffee cups, little table and table cloth.

When people come into my room their reaction is almost always the same, "Wow, you have quite the set-up in here!"

My response is almost always the same too, "After 35 years of doing this, you learn a thing or too!"

Sunday, April 26, 2015

21 Weeks Pregnant!


How far along: 21 weeks pregnant...well on the day this is posted, I'm 21.5...but I took the picture on Thursday, exactly 21 weeks. Due September 3rd!

Gender: Officially a baby BOY!!


Total weight gain: Up 10 lb.


Exercise: Unfortunately, my exercise plans for this pregnancy look very different. Between the subchorionic hemorrhage and now the complete placenta previa, I have been limited to just walking. This week I walked 30.5 miles...and biked a few as well. 


Maternity clothes: This week I got a pair of non-maternity shorts a couple of sizes bigger than normal, so I can button them. They are a bit baggy, but at least they button, and I have plenty of room to grow in the waist!


Miss anything: I definitely am missing my normal workouts! I'm also missing a glass of wine. I drink a glass of wine a handful of times a year (and that may even be rounding up), but this week, after the girls have gone down, there have been a few nights when a glass of wine sounded nice!


Movement: I'm feeling him move all the time, and the movements are getting bigger and bigger. Some nights as I laid in bed this week watching TV (it's where I camp out in the evenings when Ronnie is gone) I would just sit and watch all the movement as well. I love seeing the thumps and bumps from the outside!


Have you started to show: I think I am starting to look pregnant to people I don't know in certain outfits...and especially at the end of the day. I cannot wait to have a big ol' bump!!


Stretch marks: This is a tricky one. I never got stretch marks on my belly with Mckenna. But ever since puberty I've had stretch marks on my thighs, tush, and hips. They are very fine and you only really see them when the light hits them right. So there's a good chance that I got more with Mckenna, I just have no idea. My guess is I may be getting more as we speak, I just can't see them in comparison to what is already there!


Belly button in or out: It's in...and looks like a massive goiter in tight shirts.


Wedding rings on or off: On, when I actually wear them! I take them off for exercise, showers, and sleeping...and with my baby brain and pregnancy brain, I often forget to put them back on!


Sleep: I sleep like any other mom with a 3.5 year old and a 4.5 month old. I have fallen asleep at night and a couple of times during naps without knowing it though, so I must be sleepy!


Labor signs: None. I'm hoping none for a very, very long time. But I am having noticeable Braxton Hicks contractions already. I get them when my bladder is full, during exercise, when he's really active, and for no 
reason at all...so really, I just get them all the time.


Best moment of this week: Ronnie's been in the hospital since Monday. Friday was the first time we went down to visit him, as the first few days he's usually feeling pretty cruddy. We were supposed to go on Saturday, but we went Friday because Thursday night Mckenna had a breakdown because she was missing her daddy so much. When we got there, it made my heart burst to see how excited she was to see her daddy. And within 10 minutes of arriving, she had gotten him water "to make him feel better"; gave him a hand pound; and massaged his legs and feet. I love her caring, tender, little heart. I love that she has the heart of a caretaker, and that she loves her daddy more than anything!

Saturday, April 25, 2015

Thankful Thursday: Good Friends & Strong Medications

It's thankful Thursday time! 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. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I’m thankful for good friends. Ronnie’s in the big house, and my friends have been helping pass the time in ways that are delightfully distracting for both me and Mckenna. We’ve gone for walks with friends, played at the park, played at their houses, gone on field trips, etc. It makes days go quickly and keeps us distracted by the fact that Ronnie isn’t around. 

I’m thankful for a daddy’s girl. Mckenna misses Ronnie. She broke down crying tonight, and eventually I realized it was because she missed her daddy. While it’s a bit heartbreaking to hear a little girl cry for her daddy, it’s also heartwarming knowing that she has a daddy that she adores so much. I love their sweet relationship and cannot wait to see it blossom over the years!

I’m thankful for marshmallows. They are a classic with never-ending possibilities of tasty recipes and combinations!

Ronnie's List:

I’m thankful for strong medications. When you get to be old like me, the antibiotic selection gets slimmer and often times only the big guns are left. Big guns are great at killing the bugs, but they are also great at collateral damage. I'm thankful that the strong medications are available to me however and that I have no long-term negative effects from their use.

I’m thankful for a strong wife. Mandi can handle anything and everything. I can't imagine being a single dad for as long as she has to be a single mom. She's able to balance the schedule, keep most of her sanity and someone manage to please everyone while I'm here in the Hole. I'd feel a whole lot more guilty than I already do for being in here if Mandi wasn't who she was.

I’m thankful for a strong-willed daughter. Yeah, she can be a little much at times and really test the limits, but I'd much rather that than a kid who listened to me and responded like a robot. Mckenna has enough personality for 10 kids, yet she is still incredibly obedient and respectful...most of the time ;)

What are you thankful for today?

Friday, April 17, 2015

20 Weeks Pregnant!


How far along: 20 weeks pregnant! Due September 3rd!

Gender: Officially a baby BOY!!

Total weight gain: Up 9 lb.

Exercise: Unfortunately, my exercise plans for this pregnancy look very different. Between the subchorionic hemorrhage and now the complete placenta previa, I have been limited to just walking. I'm really excited though because this week I have been able to get in even more miles than usual. I should log over 35 miles this week! 

Maternity clothes: Still no maternity clothes. Just making other clothes work. This week I've been living in an old pair of shorts (thanks rubber band trick), dresses, and workout clothes.

Miss anything: I definitely am missing my normal workouts!


Movement: I'm feeling him move all the time, and the movements are getting bigger and bigger. I absolutely love it. This movement is why I stuck through 2 years of IVF cycles back to back. This movement is my favorite feeling in the world. I feel beyond blessed to be able to feel this again!


Have you started to show: I think I am starting to look pregnant to people I don't know in certain outfits...and especially at the end of the day. I cannot wait to have a big ol' bump!!


Stretch marks: This is a tricky one. I never got stretch marks on my belly with Mckenna. But ever since puberty I've had stretch marks on my thighs, tush, and hips. They are very fine and you only really see them when the light hits them right. So there's a good chance that I got more with Mckenna, I just have no idea. My guess is I may be getting more as we speak, I just can't see them in comparison to what is already there!


Belly button in or out: It's in...and looks like a massive goiter in tight shirts.


Wedding rings on or off: On, when I actually wear them! I take them off for exercise, showers, and sleeping...and with my baby brain and pregnancy brain, I often forget to put them back on!


Sleep: I need to get back to my usual early bedtime because I've been getting to bed way too late this week. But once I'm in bed, I sleep like any other mom with a 3.5 year old and a 4.5 month old.


Labor signs: None. I'm hoping none for a very, very long time. But I am having noticeable Braxton Hicks contractions already. I had lots with Mckenna and it's looking like this pregnancy is going to be the same.


Best moment of this week: Sometimes this week after feeding Baby N or getting up to go to the bathroom, I laid back down in bed and felt baby boy moving around. I laid awake each time just feeling him move in the stillness of the night. I thought about what he may look like. I dreamed about what he may become. I prayed to thank God for each kick and roll. These moments are the best moments in a lifetime, not just a week.