Sunday, October 12, 2014

30 weeks!

30 weeks!  Can't believe it.  We are down to the final stretch.... and stretching certainly is happening.

I have good days and bad days... yesterday was a bad one-- I was contracting on and off all day.. not really painful, but scary, because the last thing I want is to end up in the hospital- at least until he's born.  Then I'll be happy to be there.  I had done some cleaning and walking- nothing to out of the ordinary, but I didn't feel right all day and then noticed that every time I'd stand up, I'd contract.  I drank a bunch of water and laid on my side (my labor & delivery skills kicking in) and called Vanessa at work just to fill her in and make sure I was fine to stay home.  I didn't want to bother the dr if I didn't have to.  She suggested drinking Smart Water (new tip, which was awesome) so I did, and then finally got some sleep last night.

Today, I'm still having an occasional contraction, but not bad and I feel a little better than yesterday.  It's crazy how I've been a labor & delivery nurse for the last 8 years, but it's totally different when you're pregnant.  I try to give myself advice I'd give a patient, but when it's me, I start to panic a little.  Anyways, I see my OB again on Tuesday so I'll fill her in and she'll probably check things out a little further if I'm still contracting.

The nausea hasn't stopped so I'm still on the zofran as needed, and I'm still puking probably once a day, sometimes more.  Nothing like it was the first 22 weeks though.  He's growing proportionally, and everything has looked great on all of his ultrasounds besides the 2-vessel cord and the foci on his heart that hasn't closed yet.

The nursery got painted last weekend thanks to the enormous help of my mother-in-law, father-in-law and hubby.  It took four of us to create the grey stripped accent wall-- oh my gosh, so difficult.  The room looks amazing though.  I am so excited to get the furniture in there and all of the finishing touches.  I'll post some pics when it's all put together.  It doesn't really have a theme-  It's grey and white with some accents of navy and orange.  There is also some nautical and rustic touches since I have always envisioned myself as living on a sailboat for the rest of my life.  I'll have to settle for an Anthropologie sailboat on his shelf for now.

Here are some 30 week pictures.  Please excuse my messy bedroom and horrible picture taking skills.  I hate selfies and it's really hard to do one when you're this pregnant.  I wasn't gonna do any more belly pics but here you go.  I'll update again soon!  Keep praying for my L.O.  (No, he doesn't have a name yet, and the way it's been going, he probably won't until he's born and Jon and I are forced to come to a decision).  :)

Wednesday, September 24, 2014

28 week updates!

Ohh I owe you guys this one.  I have to stop first and apologize for being MIA over the last few months.  After hyperemesis basically overtook my life, things got a little rough.  I was sick of puking, and sick of writing about it.  Around 22 or 23 weeks, things seemed to finally get a little better.  To this day, I'm still using the Zofran IV pump at home, but take breaks during the day with no meds at all as long as I'm feeling okay.  But things are soooo SOOO much better than losing my stomach 20-30 times a day.

28 weeks this Saturday.  All of a sudden, LO decided he felt like growing and he has.  Within the last week, people have stopped telling me I don't look pregnant and replaced that with "wow, he's popped!"  Not sure if I'm offended by that or not.  Bottom line, my stomach is bigger and the kicks are harder and all of a sudden, I'm uncomfortable.  Hurts to sit, hurts to stand, sleep is very uncomfortable.  And LO loves to kick constantly.  I don't think I have alot of cushion between him and my skin because my whole stomach moves when he kicks and that HURTS!  Lo is gonna be an athlete.  How could he not with his father's genes and mine?

Jon is finally off my back about eating and running.  He's been giving me a hard time since the day the Lo was conceived about how I need to be eating more and I better be growing him right, etc etc.  For weeks he's told me I'm not big enough, even though I was growing fine.  This week, he looked at me and said "whoa. he's really in there."  HA!  Told you, husband.  I know what I'm doing.

Mady and the L.O have become best buddies. lately, when she barks, he kicks.  It's beyond adorable.

OK, mama is tired.  I'll do another post this week about what I ended up registering for this past weekend and you can all weigh in on what I really do and don't need.  Then we have to figure out a baby's room, people.  I need your help with that too.  And by the way, if you could give us a name that we both like, that would be much appreciated.  so there's your homework.  weigh in on my registry, design my nursery, and pick out a name for the L.O.

"L.O" or "Lo" is what I've been calling him for short-- in place of "little one".  :)

Thursday, July 10, 2014

Bermuda with Baby on Board!

Bermuda was amazing!!  Trip of a lifetime.

When I was sick and in the hospital, my entire family was affected.  Everyone was affected, and everyone had to deal with what happened in their own way.  Watching me almost die and then fight and fight for my life took a toll on everyone in my family.  Dealing with doctors at the first hospital not knowing what I had or how to treat it killed my family.  Being told I would lose my leg, watching me go into surgery after surgery... feeling hope and then having that hope taken away time and time again... watching me struggle in pain, fight the ventilator, my vitals getting worse and worse... worse then better then worse again... the pain of it all really hurt everyone in their own way.

When I was finally a tiny bit better and on the road to recovery, but still in the hospital, my Uncle Steve, Aunt Nancy, and cousin Nikki came to visit me.  Everyone was tired and defeated but hopeful and thankful of miracle after miracle they had witnessed.  God had stepped in and taken over and saved my life and everyone couldn't help but feel thankful, blessed, and in awe of God and the power of family, love, faith, and prayer.  On Christmas, when everyone was visiting me in the hospital, Uncle Steve announced that when I was healed and better, he wanted to celebrate this miracle by taking the entire family on a cruise.

Last week, he took 20 Bahrs on a sail to Bermuda.  It was absolutely breathtaking and beautiful and amazing and such a complete blessing to all be together celebrating life and God's miracle.  It was a step in the healing process that we all needed.  Just to be together, laugh, have fun.  I can never thank him enough for the precious gift that he gave to me and my family.  I'm in awe of his generosity.

Probably my favorite thing we did was the day Jon, me, my best cousin Bryan and his wife Gaby rented mopeds and explored the island.  We drove to Horseshoe Bay Beach where we met up with the rest of the family and spent the day there.  It was so much fun and so insanely beautiful.  And I trekked up a very steep cliff with my little fighter of a leg.  It was amazing to see how far I've come physically.  I had to take a minute up there looking out at the beauty of the sea and the cliffs and just thank God for saving me and my leg and for the determination he bestowed upon me since birth-- that I'm a fighter and I won't give up, no matter how hard it is.

The hyperemesis was still in full force, so I had my IV in the whole time.  But after a day or two, the sea and the air calmed me like it always does.  I remember how on my honeymoon in Kauai last year, my pain (still pretty fresh at the time) seemed to get better the longer I was there.  On Friday (the second to last day of our trip), I decided to take the IV out while we were driving the mopeds.

Little did I realize that night we'd experience the worst waves and boat rocking our captain had ever experienced in his 25 years.  We were sailing home on the outskirts of Hurricane Anthony and the boat started rocking back and forth so bad I couldn't stand up without falling.  Immediately the vomiting started and it was continuous, every 5 or so minutes all night long.  The next day, the boat continued to rock and all I could do was lay there and want to die.  By that time, the vomiting was about once an hour.  I couldn't even keep a sip of water down without throwing up immediately.  I would try to stand up and my legs would literally give out, a combination of extreme sea sickness/hyperemesis, dizziness, and weakness from lack of food and fluids.  At one point, Jon got me into the shower and I sat on the floor, just throwing up over and over, and Jon ran to find my parents to try and get some dramamine.  My cousin Lance had some, but as soon as I took it, I threw up.  I thought I was gonna die that night... seriously.  Jon and I were both scared.... here we were in a boat in the middle of the ocean without a hospital to help me.  At last, Jon was able to get me up to my parents room on a higher deck and I felt better being higher up where the rocking was a little less and I could breathe fresh air from their balcony.  As the second day went on, the sea began to calm and my stomach started to calm too.  It took a few days to feel back to normal but I'm feeling much better now.  Other than that little hiccup, the trip was one of the most amazing experiences of my life and I just can never thank my Uncle Steve and Aunt Nancy enough for blessing me, Jon, and my whole Bahr family with the trip of a lifetime.

Had a dr appointment yesterday.  Baby boy is doing great, but mama isn't yet.  My nec fasc or scars haven't been an issue at all.... it's the darn hyperemesis.  I lost 5 more lbs and the doc said any more and I'm getting a feeding tube.  For now, we're gonna try Ensure (ewwww hospital flashback!!) and protein shakes.  Please pray that this vomiting subsides soon and kiddo keeps growing.  We're gonna start doing serial ultrasounds (every 4 weeks, then every 2 weeks, then every week and then biweekly until delivery).  Dr. Yockey foresees bed rest in the future and we're doing every lab and every preventative measure to prevent that.  She's concerned that the organ failure during nec fasc might cause some preterm labor or pre-eclampsia/eclampsia later on, so we're being extra viligent.  Again, I have the best OB team watching me and this baby and we are so blessed for that.

Keep praying for our little man...grow bean grow!  Pray that he is HEALTHY. That's all we care about.  

Tuesday, July 8, 2014

16 week pictures!

16.5 weeks!  We're well into the second trimester and the hyperemesis has no end in sight.  I still have the IV pump in continuously.  I'm gonna write a more detailed post later about our trip to Bermuda but we just got home a day and a half ago, and I have so much to do.  But I did want to post a 16 week picture.  Definitely a bump there.  Our little man is growing!

Saturday, June 14, 2014

13 weeks and 12 miles!!!

13 weeks today!

I celebrated by running 12 miles early this morning.... my longest run to date since recovery.  It is amazing what a continuous IV of zofran can do!!

I feel alot better with this med.  It's a pain carrying around the pump, but I detach it when I'm running or showering and then just restart it when I'm done and give myself a bolus before and after.  The first night it was placed, I ran and I had to stop twice to puke.  Detaching it made me immediately sick.  But the Dr. said that I could detach it and bolus it before and after if I wanted to run, and see how that works.  Technically I could leave it attached to me while I'm running, but honestly, it's so much easier to just take it off for that time.  Plus, they've upped the dose twice since they started it, and I think that's really helping too.

I'm still throwing up, but I only threw up ONCE yesterday.... YAY!!!

Now, let's hope we're almost past this stage so I can get the IV out.  I think it will probably be at least a few more weeks, but I'm praying it's out by the time we go to Bermuda.... we leave in 2 weeks!!

Last night, we celebrated Jon's first "father's day" by going to the Belly Factory to see the baby on ultrasound.  It's a really cute and cool place that does ultrasounds at any time.  Of course, this isn't covered by insurance, so it isn't cheap, but it's nice to be able to go and see the peanut whenever we want.  Baby was soooo cute again.  Legs were straight up in the air again.  Must've been stretching after a kicking session.  Jon got to see the baby moving alot and punching his/her arms.  Soo sweet.  Heart rate was 164.... still in the girl zone, but again, none of that stuff really matters... this little could be a boy or girl.  And we find out this week!!!!  YAY!!

Please continue to pray for a healthy, healthy, healthy, baby.  thank you!

Thursday, June 12, 2014

12+4.. and pictures!

Well here we are... 12 weeks 4 days!!

Last week, I had a BIG ultrasound.  The ultrasound in the safe (safer) zone.  My previous ultrasound was around 8 weeks, so from 8-12 weeks I had to just cross my fingers and pray that baby was ok and continuing to grow and develop.

When the ultrasound tech (and let me just mention that my doctor has the BEST ultrasound tech in the world) put the US on and I immediately saw and heard the bean, who is no longer a bean, I couldn't help but laugh and cry at the same time.  Our kiddo is SOOOO CUTE.  He or she is a real baby now!! I could see everything- the head, face, body, arms, legs.  The funniest part was when she first put the probe on, I saw a perfect profile of the baby, and baby's leg was sticking straight up in the air.  I laughed so hard because that is exactly the position I was in when I was in the coma in the hospital.  Everytime my family or the doctor came into my room, I was laying there with my leg just straight up and out in the air.  No one knew why, but I was always doing it.  It probably felt more comfortable to me somehow, or alleviated the pain in my leg or back.  Not sure, but when I saw my baby laying there with one leg up and out in the air, it was just beyond hilarious and prophetic and beautiful.  You wanna see a picture of my peanut??  Look closely and you'll see his/her little leg up in the air like mama.

How cute is that little foot??

About a minute after I watched my baby lay there with his/her leg in the air with the tech explaining what everything was, all of a sudden, the baby started moving.  He/she started kicking his/her legs really fast and stretching his/her arms.  Looked like my little is gonna be a runner like mama.  Those little legs kicking so fast looked like my baby couldn't wait to get out and start running.  Which is good, because he/she is gonna spend alot of time with mama in the jogging stroller running around Naperville  when he or she is born.  

Speaking of running, I'm still keeping up with it and running anywhere from 6-10 miles a day, usually about 6 days a week.  My speed hasn't suffered either....yet.  Around a 7:00 min split.  I've started using the belly band when I'm running because it feels more secure and I feel like I'm not bouncing the baby around.  And thank you all for your sweet concerns, but no worries, my doctor has okay'ed my running and is keeping very close track of my activity, diet, & baby.  I am in that office constantly, which is kinda nice, because I love my doctor, Dr. Yockey, and her midwives Nicole and Donna.  

And as for the vomiting.  Now it's officially been diagnosed as hyperemesis and I am on a continuous zofran IV pump.  There's a little tube that goes directly into my stomach to administer the med and I just got it put in this morning, so it's too early to tell if it will help.  With the oral zofran pills, I was throwing up around 6-10 times a day.  And if I went a day without the zofran, I would literally throw up every hour, sometimes more.  For example, I ran out on Saturday and didn't take it for half of Saturday and part of Sunday, and by Sunday morning, I was throwing up every 15 minutes, intense intense dry heaving....I couldn't breathe.  It was horrible.  At my appointment last week, they realized I've lost 7 lbs and that was it... decision was made to start the IV infusion.  At least it's at home and I don't have to go into the hospital, although if I lose anymore weight or this pump doesn't cut it, I'm gonna find myself back in the hospital with the freaking tube feedings again.  Please take a second and pray for me that it doesn't get to that level.  

Despite the weight loss, my little one has been growing steadily and I have a little bump to prove it.  I'm so proud of that little peanut in there, just growing and moving and developing, even though his/her mama has been so sick.  He/she is still measuring about 2 weeks small, but the growth is consistent and steady.  Here's some (rare) pictures of my belly bump.  I am sooo not the type to take preggo pictures, so don't expect to see a preg photoshoot from this girl.  No offense to those who do, but it's just never been something I've wanted to do.  I do want to keep track of my bump growth, so I'll take an occasional pic of the bump and share if I feel ok to do it.  Here you go.. please don't judge my messy bathroom and scrub pants/hoodie outfit.  I've already puked 4 times this morning and I'm not dressing up just to throw up all over myself.

Please also excuse my abdominal scars.  

So, there you have it.  Please continue to pray for a healthy baby, a healthy pregnancy, and a stop in the  vomiting.  I HATE HYPEREMESIS.  Oh yes, one more exciting thing.... we will be finding out the sex of the baby NEXT WEEK!  I know it's early, but the first trimester blood test for genetic screening now tells you the sex of the baby around 2 weeks after the blood test.  They took my labs last week, so by next week, we'll know if this is a miss or mr.  Any guesses?

Let's talk about Hyperemesis.

Let's talk about hyperemesis.

Oh my gosh, do I have a whole new respect for my patients who have to go through this pregnancy madness.  I honestly thought everyone threw up when pregnant.  Not a big deal, right?  I knew it was a little abnormal when I was at my 6 or 7 week appointment, throwing up all day, and asked my doctor for some zofran.  She was happy to give it to me when she found out I was throwing up.  She proceeded to tell me that they usually don't prescribe it for that constant yucky nausea pregnant feeling, but once the patient is throwing up multiple times a day, they need the zofran.  While that nausea feeling does suck... (Donna, who is the midwife in the office and also one of my friends from work, calls it a sour stomach feeling).... that nausea is nothing.  Throwing up every hour, all day all night, gagging and banging your head on the toilet, crying, not being able to move your head or you'll throw up, spending an entire 3 hour flight in an airplane bathroom puking, spending your whole life trying to figure out what to try and eat because EVERYTHING makes you throw up.... that is hyperemesis.  So far I've had to get IV fluids at the hospital a few times, when I can't keep anything down for 12 hours, including water.  Some women get to the point where they lose so much weight they have to be hospitalized for weeks at a time with a feeding tube.  We are not at that point, thank God.  Hopefully this madness will end soon, because right now, it's consuming my life and making this pregnancy NOT FUN.

For those of you with hyperemesis, wives with HE, or friends with HE.... Here are some things I've had a little success with.  Tips, if you will.  They don't help that much.  But hey, maybe it will give you an extra hour without puking.  Which is all I ask for some days.

1.  Always try to keep something in your stomach.  Even if it's literally one saltine.  A completely empty stomach makes it worse.  Sometimes it's a cycle of me eating something, then immediately puking, then eating something, then immediately puking.  But even a bite or two of something is better than nothing.

2. Zofran (some people refuse to take any meds at all while pregnant.  Trust me, if you're puking 24 times in a 24 hour period, you're gonna be taking the zofran.  I ran out one Saturday a few weeks ago, and in the day I didn't have it, I threw up 20 times.  If I take it regularly, I usually throw up 6-10 times a day).  Take the zofran.

3. Preggo pops.  I don't think they really work, but I think it's a mental thing.  I just suck on them pretending they're working and try not to think about throwing up.

4. Running.  It sounds weird, but I haven't had to stop once during a run while pregnant to throw up.  It calms my stomach and helps me breathe regular and it somehow helps.  Which is great, because I would hate not being able to run everyday.  I'm sure I'll reach a point during the pregnancy when I won't be able to run anymore, but right now, my doctor is okay with it, and my body likes it.  My kid is already used to our daily run, and I plan to continue that as long as I possibly can, and as soon as I can after delivery.  I will dedicate a whole post to pregnancy running sometime in the next few weeks.

5. Fresh air.  This really seems to help.  Sometimes if I'm feeling really horrible, I'll just walk outside.  Even just taking Mady out-- the outside air immediately relieves the nausea.  It comes back, but it's crazy how just going from inside to outside, I have an immediate feeling of relief.  I've been keeping the  windows open, but it still doesn't compare to actually walking outside and standing there in the fresh air.  Mady and I have been taking long walks everyday, which is great for her, and the outside air is great for me.

6.  Sleep.  Obviously, if I'm sleeping, I'm not feeling nauseous.  It sucks waking up though, because I always feel the worst when I first wake up.  Whether it's from a nap, in the morning, whatever... waking up from sleep is the worst time for nausea and vomiting for me.  But when I'm actually asleep, it's good.  Speaking of sleep, I could sleep for 24 hours a day right now and still be tired.  I've never felt  fatigue like this... it's crazy!

7.  No plain water.  Dr said it makes most hyperemesis patients puke more.  Gatorade or juice is better. Weird.

8. Finally-- Zofran IV pump.  Attached to your stomach and continuously administering the miracle drug for puking.  I just added this one- weeks later- because I now have my pump. I'm still puking but only 3 times today!

Come on, second trimester.  Please be better.  My baby hates food as of now.

Important Questions.

Mommy Questions:

I have a million questions for my mama friends out there, and I'm gonna start writing them down now so I don't forget later.  I'm 11 weeks today.  Hopefully in another few weeks we'll be able to make the big announcement.  It's crazy to think everyone is just living their lives, and no one (well besides our family and my best friends) have a clue that I'm almost 3 months pregnant with a miracle babe.

Anyways... gonna start jotting some of these questions down now so I'll remember to ask y'all when it's  okay to.

1. Serious runner moms-- what is the best running stroller out there?  Is it better to have a separate running stroller and carseat/stroller combo for everyday?  My SIL uses her running stroller on a daily basis, but it seems a little less stable than I'd like for marathons and trail runs.  I'm a mom that's gonna be running long distances 6-7 days a week, so the investment is worth it...but what exactly do I need?

2. How many carseats do we need?  Should we get one carseat/stoller and one additional carseat?  Or is that unnecessary.  Is it really annoying moving the bases or not a big deal?  What do you guys have?

3.  I need a pack and play, right?  What is that exactly?

4.  And what else-- a baby swing?  play pen?  (or is that the same thing as a pack and play?)

5.  Crib and a separate bassinet, right?  Worth it to get the crib that turns into the big kid bed or not?

6. If i'm going to strictly breastfeed, do I still need bottles?  If so, how many?  Just a few?  (I'll pump too  eventually, but not for awhile.)  Dr. Browns are best, right?  And you can do pumped milk in the dr. browns or do you get bottles with your pump?

7.  For pumped milk, what do I need?  Freezer bags?

8. What are the baby products, furniture, etc. that you couldn't live without?

9.  What baby products do you not really need and would exchange for something else?

10. Besides cute outfits for certain events, what does a baby born in December typically wear on a daily basis? I know from being an aunt that Caleb does not wear jeans and cute little polos everyday.  What kind of clothes should I buy a bunch of?

Almost 11 weeks y'all!

10 weeks 5 days today.  Moving right along, and almost done with my first trimester.

 Hyperemesis is worse than ever, even though my zofran dose was doubled before last weekend.

The wedding in Dallas was a blast- besides my constant puking.  I threw up the whole plane ride there, the whole day of the rehearsal, in the bathroom of the mexican restaurant at the rehearsal dinner, the rest of that night in the hotel room.  The next day, Saturday (the day of the wedding), I did okay throughout the day while we were getting hair and makeup done, and then THANK GOD, I made it through the ceremony okay.

Tragedy struck after bridal party announcements at the reception.  Instead of walking over to where the rest of the bridal party was standing to greet the bride and groom, I got introduced, then ran out the door into the bathroom where I proceeded to throw up for the first 20 minutes of dinner.  Eek.

After dinner, I was able to dance and make it through the rest of the reception okay, and actually had an awesome time dancing with my family and cousins and uncles and Jon... that is, until the last hour.  The last hour of the reception was again spent hugging the toilet, and as soon as the reception was over, Jon and I raced back to our hotel room for more, you guessed it, puking!

Despite the constant trips to throw up, we had a great time with my family, went to some amazing restaurants, and had a blast at Christina's wedding.  It was such a cool, unique venue and so much fun.

Cravings this week:  lemonade, grapefruit, and peanut butter toast.  Lemonade makes me violently ill every single time I drink it, but I want it anyway.  I also had my first ice cream craving this week, and then promptly puked it up.

Things that make me sick:  everything, especially the smell of the shower (I know, weird) and most food.  I'm sickest usually in the middle of the night and then in the morning, and then it slows down a little but continues all day.

Running:  I'm still running daily, and still haven't had to slow that down at all.  Running still seems to keep my stomach calm, so I'm gonna keep doing it as long as I can.  Yesterday I took a 2 hour walk, and it felt great.  I think the outside air calms my stomach too.  I started wearing a belly band just for extra support.

Other symptoms:  still exhausted.  Could sleep all day if I let myself.  And very grouchy at times.  haha usually I don't have a mean bone in my body, and no backbone whatsoever.  Not lately.  If someone is rude to me, they get an earful.  It reminds me of my friend Vanessa.  I remember her telling me that when she was pregnant, she had no filter.  She went off on a doctor one night and it was absolutely hilarious.  That is me lately.  Don't mess with the preggo lady.

We told the rest of my dad's side of the family right before the wedding, so everyone knew before the weekend.  Everyone was excited and shocked and thrilled.  It is so great having my sister-in-law Anne who just had my nephew, so she knows everything and is teaching me so much.  She didn't get sick like I do, but she gets the other symptoms and things to expect.  We are so excited to raise our first kids together- Caleb and our baby will only be 9 months apart!  I am 10 months older than my cousin, and we are the best of friends, so I look forward to my kids being close with their cousins too.  The Bahr family is super, super close, and we intend on raising our kiddos together like our parents raised us with our cousins.  I look forward to lots of time spent raising our water babies at my parent's house they are building on Benthaven Island in Lake Conroe.  Their house is basically going to be like a resort when they're done with it, and it will be boating heaven.  Cannot wait to raise our kids on the water and with my family.


9 weeks 2 days today.

I have to say, this better be the worst part of the pregnancy or I'm not going to survive this thing.  I've been diagnosed with hyperemesis gravidarum, which basically means I puke my guts out all day and all night long, 24/7.  This is not typical morning sickness, people.  Constant nausea and vomiting 6-15 times a day.  It is horrible... I literally am counting the days until the end of the 1st trimester when hopefully things will get better.  I'm on a medication for nausea called Zofran.  I thought it didn't really work, until the day I ran out and puked 30 times while I was trying to get ahold of the office to refill it.  The problem with this med is that is extremely expensive... there are no alternatives and it was originally created as a chemo med to help cancer patients with the nausea and vomiting.  Although I can take it 3 times a day, insurance only covers a very small amount of the med per month and out of pocket it is about $66 for 10 pills.  Insane, right?  But desperate times call for desperate measures.  It's either this or I'm in the hospital on IV fluids and IV nausea meds.

Other than that, I'm doing great.  Very minimal pain on my scars, which is just a freaking blessing from God.  I was initially afraid that my growing belly would put pressure on the scars and cause crazy pain. So far, so good.  I've been overloading on the belly butter and all that, so hopefully God will miraculously stretch my stomach as it needs to for this baby without killing the mama in pain.  We're going to be doing a c-section... labor contractions on all my scarring would not be a good thing and it's just too risky.  It kinda sucks because a c-section recovery is alot worse than a regular recovery, but geez I'm probably better at dealing with surgical pain than any labor pain I'd experience.  This will be surgery #10 in 2 years.  Whoa.  I'm a freaking pro, right?!

J and I are so excited about this baby now... which each week that passes and I do well, we allow ourselves to feel a little more real about it.  We were so skeptical in the beginning, but we're starting to realize we actually (prayerfully) have our first little coming in December.  Working on names.  :)

Our families are beyond excited and supportive and we're hoping to be able to tell our extended family and friends in a few weeks.  Please keep praying for our miracle bean!

BIG #27- The BIGGEST miracle of all

I'm 14.5 weeks today (almost 4 months) but I wrote this a few weeks after I found out I was pregnant....  my initial reaction to finding out the biggest surprise of my life.


God just gave us the BIGGEST surprise miracle of all.

Baby Nilles will be arriving in December!

I am still in shock.  I'm writing this post long before we're going to be telling people about this pregnancy, but I wanted to make sure I journaled how I'm feeling at this exact moment.  It's still a major secret right now, but here's the list of people who know our secret:

my Mom & Dad
My brother Matt & sisters Jessica and Anne
My best friends Liz, Erum & Nicole
My work girls Tenele, Vanessa, & Kim.
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                       Everyone else is completely unaware, and it's kinda fun to have this little secret that only jon and me, my immediate family, and my closest girls know.  We're going to tell Jon's parents this weekend- mother's day.  I got a little frame that says "Grandma's little cutie" and I'm going to put a pic of one of our ultrasounds in it and give it to my mother-in-law for mom's day.  They are going to be beyond shocked.

Other than that, we have another month or so before we tell the rest of our families and friends.

Right now I'm feeling:

Shocked, scared, excited, terrified, thrilled.  And most of all, nauseous and puking and exhausted.

I had an appointment with my OB doctor today and they found the heartbeat... 116 bpm.  I'm officially due on December 20th, and I'm 7 weeks and 4 days right now.  The baby is measuring a size of 5 weeks 6 days, so he or she is a little peanut, but everything looked great on ultrasound, tiny little bean was there, heart beating away.  I have to up my nutrition a bit to grow this bean, but it's looking like we may have a bitty baby.

You don't even understand what a shocking miracle this baby is.  I didn't write this in my earlier blogs, because it was such a scary and private thing for me... but after I got sick, had all the surgeries, and started to get better, my nec fasc doctors sat me down and gave me some sad and scary news.  They told me that due to how deep the infection had gone into the abdomen and how much tissue had been removed, it would be nearly impossible for me to get pregnant.  The areas affected were so close to where those reproductive organs are that it would be physiologically impossible for it to happen.

Besides the infection and surgeries, my hormones were hugely affected by the sepsis, shock, and organ failure, and they've never normalized since.  Well, apparently, they normalized enough for me to get pregnant.  Somehow, despite the odds being against us is EVERY WAY POSSIBLE, God did His own thing and created this miracle for me.

We were told we couldn't get pregnant, we weren't at all trying to get pregnant, yet here I am, 7.5 weeks pregnant with a tiny miracle bean.

Dr. Yockey calls this baby Miracle Bean.  And every time I leave the office, the nurses yell after me, Grow Bean Grow!  I have a wonderfully amazing OB team that are extra careful with me and this baby, and are watching EVERYTHING, and everyone is behind us.  I work with my doctor in L&D at Alexian Brothers, so she was there when I got sick, there when I had those first 3 surgeries, and even snuck into the OR at one point to see how I was doing.  When I went for my first appointment after getting a positive test at home, everyone in the office knew who I was, "that L&D nurse who had nec fasc and almost died" and everyone was so shocked and thrilled to witness this miracle.  We've already done 5 ultrasounds since I found out I was pregnant, which is alot, but it makes me feel a little less scared knowing that my doctor is watching everything and we're taking things day by day.

How did I find out I was pregnant?  I almost didn't.

Every few months since we've been married, I've taken a test just to be sure, since like I said, my hormones are out of whack.  Not to get into too much detail, but basically what I'm saying is that if I didn't take a test, I wouldn't know either way, monthly, like other women do.  So anyways, I decided to take my random test one night a few weeks ago, and after seeing it looked negative after a minute, I threw it away.  I don't know what made me look at it a second time a few minutes later, but I dug it out and checked it again.  Honestly, I have no idea why.  I saw a tiny, faint second line.  I didn't believe it, but was freaked out.  You could barely see the second line so I thought it was nothing.  I called my best friend and she told me to take another test in the morning.  So I did.  On Easter.  And it was positive.

The next day, I took two more tests, one of them being digital, and when it said in clear words, "pregnant."  I completely freaked.  I called the dr immediately and said, "Um I've never had this happen before so I don't know what I'm doing, but I think i'm pregnant.  And I have a pretty extensive health history, so I think I should probably see the dr right away."  She scheduled me for an appointment and ultrasound the next day.

Then I told Jon.  Who didn't believe me.  Even after I showed him the four tests, he didn't believe me.  He didn't believe me when the blood test the next day was positive either.  I don't think it hit him until I brought home a picture of the tiny bean on ultrasound.  Then I gave him a little onesie that says 'Daddy's Little Caddy' and told him he's gonna have a  golf buddy in December.  He was shocked, but thrilled.  We just cannot believe it.

I wanted to tell my parents, and Matt, Anne, Jess, and Mike in a cute way, but I couldn't wait.  I won't see my parents for another 3 weeks, and I just couldn't wait that long.  My parents screamed over the phone, we all cried, and I think my dad is still in shock.  He and Jon are in "Worried Daddy" mode right now.... My dad is worried about his baby, and Jon is worried about his baby.  They both think I need to be seen at least weekly at the dr, which I tried to explain to them is overkill, but you know how they both were when I was sick, well, now they still have those worries, plus the Bean to worry about.

There are worries, as there are with any pregnancy.  Even the most normal, healthy pregnancies can have issues and things go wrong.  All we can do is take one day at a time, and pray pray pray.

I truly believe God gave us this baby because it is right in His timing.  We just have to trust and pray, just like every other pregnant woman does.  Please pray for a wall of protection around me and our baby as we go through these next 7 months.  Pray for a healthy baby.  That's all we care about.

Not sure if we're going to find out the gender yet... right now I think we're keeping it a surprise.  But we'll see...that may change :)  We honestly don't care either way-- all we want is a healthy little peanut. I'm due on December 20, and they'll likely do my c-section a week if not two weeks early, so sometime in December, Mady will be a big sister.  I told her already, and so far, she seems okay with it.  It should be interesting, bringing the little one home to a very spoiled and attached-to-her-mommy beagle.  Mady may be introduced to a cage for awhile.  Crossing our fingers.

Well, I've only had to stop once during this post to throw up.  So I've only gotten sick once in the last hour...progress!  Needless to say, all I have done is constantly throw up for the last week.  The doctor gave me some nausea medicine, so hopefully that will start to help, otherwise, I'm gonna be carrying around that damn feeding tube again.  (kidding!)

Please pray for our bean.  Pray that God places a wall of protection around our baby and his/her mama. We're scared and all we want is a healthy baby and mama.  Can't wait to post this in another few months.

Saturday, May 3, 2014


I just want to send a BIG thank you to all of you who have walked alongside of me in the crazy journey.  God has answered all of our prayers, and I'm doing great.

My pain is pretty much gone.  There are still times I feel sore or my scars bother me, but nothing compared to what I've been through.  I'm running 6-7 days a week again.  I've had to teach myself how to run differently and use my good leg more to keep the pain in my right leg at a minimum, but I'm fighting every single day for a better run.

Hoping to get back to work very soon.

Thank you again for your continued prayers and support.  Although my BIG will be a part of my life forever, I'm getting better every single day, and ready to get on with my life!  Ready to be delivering babies and running marathons again.  (I already have a marathon destination in mind) and my ultimate goal is to beat my 3:38 personal best and go for a 3:15.  I've already qualified for Boston once, and I'm determined to do it again with my new leg.

I'll continue to keep everyone updated on how I'm doing, but hopefully this blog will be less and less about my experience with nec fasc and more and more about my life as a marathon runner, newlywed, labor & delivery nurse.

Monday, April 14, 2014

BIG #25: Recovery

I was worried about going home.

Most people cannot wait to get out of the hospital when they have to go there.  But after you nearly die everyday for 3 weeks and then again a year later, you start to fear leaving the place that saved you on two separate admissions.  

I stayed in the hospital for 3 more days after the second surgery.  An additional drain had been placed in my abdomen, so I now had four drains removing the blood and fluid from my abdomen and leg.  The pain was nearly unbearable.  The pain medication helped a little, but I was on an IV, and I knew when I went home, that would be stopped and I couldn't imagine how bad the pain would be without the strong medications.  During those 4 days in the hospital, I slept a total of about 4 hours.  I was so much pain I couldn't sleep.  I'd dose off for a few minutes then be jolted awake by stabs of pain in my stomach.  The majority of the pain was on the right side of my abdomen where the hematoma was.  That poor area had been operated on twice in one day, plus 5 times previous to that.  The post op pain for this most recent surgery was the worst yet, and I didn't know how it would be possible to manage it.

Besides the pain, I felt weak.  Unstable.  Just felt like something was seriously wrong and it didn't feel right to not be monitored 24/7.  My heart rate was still hanging around 130-140.  My doctor and nurses attributed it to the pain, but something just didn't feel right.  I had received quite a few units of blood so my labs started to improve, yet I worried about my heart rate and overall stability.

I was excited to be in my own bed and see Mady and eat regular food instead of hospital food, but I was scared.  As a nurse, I know the dangers of 3 large incisions,  back-to-back surgeries in the same incision, too much blood loss, possible infection, and potentially, another hematoma.  I had to trust my doctors and God.  

After I got home, there is really only one word that could sum it up:  Pain.

It was absolutely horrible.  Worse than the skin grafts, because one, with the grafts, I was in the hospital and on IV medications for 2 weeks afterwards, and two, the skin graft removal and reconstruction of my abdomen paired with a hematoma had crushed that part of my body.  

It also wasn't fun laying in one position without being able to really move.  I had a brace on my leg so I couldn't bend or move it (they didn't want the new incision to be pulled at all).  Besides the pain, that was the hardest part.  Since my discharge from the hospital after my BIG hospitalization and those first 6 surgeries, I have been devoted to my PT and working out daily to get my leg to heal.  That hour or two a day de-stresses me and makes me feel great because I know with every workout, I'm strengthening that leg.  TV isn't fun anymore when you're watching it 24/7 for 5 weeks.  Despite the pain, I wanted to jump off that couch and do something.  Just laying there is depressing.  With the 4 drains, I felt self-conscious.  It isn't pleasant looking at that, trust me.  

A week after I was discharged from the hospital, I started noticing that there was too much fluid in the drains and my abdomen started swelling.  I had a sudden drastic increase in the pain, and it was horrible.  I cried to my mom over the phone, asking her to please pray that the pain would go away.  I was scared that something was wrong, so Jon brought me to the ER to get checked out.  They did a CT scan of my abdomen and noted that there was some fluid and a ton of air on the right side where the hematoma was.  The fluid and air was pushing against my incision from the inside, causing severe pain.  There was nothing they could really do for it...I just had to wait it out.  Another trip to Loyola a few weeks later resulted the removal and re-insertion of the drains when the doctor noted that there was too much fluid and fluid build-up under my abdomen.  I was running a fever and was put on antibiotics, and the quick diagnosis prevented any additional surgery to remove fluid.  Of course recovery couldn't be simple.  

One funny story from the night Jon took me to the ER.  The resident who reviewed my CT scan in ER saw the air in my abdomen under the incision and came in the room and told us "We're gonna have the surgical team look at the CT because one of the signs of necrotizing fasciitis is air buildup inside the body.  I'm concerned you might have nec fasc again."  ARE YOU FREAKING KIDDING ME?!!!  Jon was like "WHAT??? What the heck are you talking about??!  "  I knew it wasn't nec fasc and the surgical team confirmed it, so I can laugh about it now.  He was a first year resident in his ER rotation and just hadn't encountered NF.  Of course he hadn't, there's only 500 cases a year in the US.  It's funny when I see a new doctor or nurse who hasn't taken care of a patient with a history of NF and all the surgeries, wounds, skin grafts, coma, etc.  They are always fascinated, ask a million questions, and want to examine all the wounds.  I can't blame them, I'd probably be curious too.  When I told Dr. Mosier and Dr. G about it, they just laughed and shook their heads. 

After those shenanigans were over, all that was left was recovery.  I layed on the couch and tried to ignore the pain.  Eventually, the drains were taken out, one by one.  The last abdominal drain stayed in for several more weeks but finally they removed that, and I was somewhat free.  Not really, I still had to lay there and not move, but at least I wasn't dragging drains around.  Laying there like that was extremely depressing.  I felt somewhat worthless- I couldn't work, I couldn't take care of the house, I couldn't make dinner.  As others went on with their lives, I started to feel lonely.  Jon was amazing, as usual, but he was gone at work for 12 hours a day.  There were many, MANY, times that I called my mom crying.  WHY am I still going through this??  Why did this happen?  It's not fair!  I'm so sick of being sick.  Why am I still consumed with this nec fasc while everyone else is living their lives, working, having kids, etc.  "I know, Ames," she would say.  "I know it feels unfair.  God is gonna get you through this.  You have to trust that God has great plans for you.. We don't know why, but we have to trust."  

I knew I had to walk with God instead of walking away.  And when you feel like that, trust me, sometimes you feel like walking away.  I knew I had to trust in Him and go to Him for strength, instead of trying to be strong on my own.  

5 weeks after surgeries 8 & 9 I was allowed to start PT again.  I was thrilled... Finally I could MOVE!!  

I'm now around 12 weeks out.  I'm working my butt off in the gym, trying to strengthen a leg that has no quad muscle.  I'm teaching myself how to run differently, using different muscles instead of my right quad.  As a result, my knee and hip are constantly sore and my calfs cramp in the beginning of every run.  

You might think, okay, if you can run, you're totally healed, right?  Not yet.  Nec fasc is an illness that brings lots of lingering health effects.  I still don't sleep well.  I still have nightmares about surgery.  I still deal with weakness all day long, and have to suck it up to go to the gym for that hour or two.  When I'm done working out or going to PT, my body is just done.  I ache so bad, everywhere.  My leg, my hip, my knee, my back.  Since alot of my abdominal muscle was removed, I just don't have any strength in my core.  Working out and PT is helping that, and slowly, I'm getting stronger.

My goal right now is to get back to work (I'm a labor & delivery nurse) sometime this summer.  I'm doing everything I can to build up my endurance, deal with the pain, and fight the weakness.  Right now, a 12 hour shift would be impossible.  Even a 4 hour shift would be extremely difficult and probably very painful.  

I know I can do it.  I'm praying about it daily and doing my part- working hard and fighting.  I know when I run my first post-nec fasc marathon and help deliver the first baby, all of this hard work will pay off in pure exhilaration.  
And when in doubt, I have to remember that I'm here. I'm alive.  I beat the odds;  5% survival rate.

I have a BIG but it's now what makes me, me.  and I AM BLESSED.

Tuesday, April 1, 2014

What We're Up To...

Working on my recovery from surgeries 8 & 9 post and my goal is to get that up this week, and I've also started compiling pictures for my Caleb post.

Yes....Our lives changed DRASTICALLY last week.  My brother and sister-in-law gave birth to their first baby, who is the first baby born in the Bahr family, immediate and extended.  First grandchild, first great-grandchild, first great-nephew, first second-cousin, first nephew!

He is our world!!!  Seriously, I've only been apart from him one day since he was born a week ago, and I missed him terribly.  Jon and I went from talking about a baby to a very intense baby fever, very quickly.  :)  

Sorry I'm a little slow with posting lately.....We've been a little busy around here....

  • Obsessively taking pictures of the love of our life, Caleb Robert Bahr.

  • Planning our anniversarymoon.

  • Enjoying the first day of Spring, which for me means outdoor running, and for Jon means obsessively golfing.

  • Going on our first date night post-surgeries 8 & 9.  Mind you, that date night included sweatpants, ball caps, and Hooters for March Madness.  But nonetheless, we drove to an actual restaurant, and ate INSIDE THE BUILDING.  You'll see when you read the recovery post, these last 2 surgeries were hell and recovery was even worse.  As a result, there's been a lot of Subway and bowls of cereal being eaten in the Nilles household since January.

  • Speaking of which, I went to the grocery store last week for the first time since surgery.  Yeah we both lost about 10 pounds and were starving. I kid.  but really, that's how long it took my body to be able to get through such a task.  It was rough though... I was incredibly sore afterwards and literally came home, laid on the couch in a ball and cried to Jon.  Eventually he was able to massage me out of my ball and I felt a little better with some pain medicine and the massage.  Good husband.

  • And our best and biggest news besides baby Caleb...  Jon got a huge promotion to one of the highest positions in the company last week.  I am such a PROUD WIFE!!  He has just killed it over there, moving up in the company at lightning speed, despite me getting sick and him having to miss several chunks of work because of my hospitalizations.  I am endlessly amazed by him.

  • And finally, we're planning a few trips in the next few months, so we're gonna be jet-setters this Spring.  Besides our one-year anniversarymoon, we're going to Dallas in May for my cousin's wedding, and then entire Bahr family is going on a cruise to Bermuda in June.  Oh my gosh, stick me in a suitcase and sent me there now.  I cannot wait!  It will be Jon's first cruise, and I can't wait for him to see what a Celebrity cruise is like.  Celebrity is the only cruise line my family uses (Uncle Rick and Nick who go on 4-6 cruises a year and know everything about them have dubbed Celebrity the very best...and they are).  It will be fun to be in such a beautiful place with the hubs, and also, it will be great to be with my Bahr family, who I adore.  My cousin Bryan will be there who is one of my best friends and we always have a blast together on family trips.  Every year when we were growing up, our parents took our families on vacation together and those trips are my favorite memories of childhood.  Needless to say, we are excited to be world travelers over the next few months!
Hope everyone is having a great week, and I'll put out an email and Facebook share when I've gotten the next BIG up and the Caleb post.  

Tuesday, March 18, 2014

Baby Frankie's BIG part 2.

If you need to refresh yourself on where I left off with Frankie's story, go here.

As the year went on, Frankie slowly began to heal.  But his journey was far from over.  Necrotizing Fasciitis is much worse in a baby, toddler, or child than an adult, because kids that small are constantly growing, which means their wounds and scars stretch, and the grafts start breaking down.  As a result, Frankie was taken back into surgery several more times in this last year to fix areas of breakdown.  Even worse, as Frankie continues to grow, he will need to be re-grafted many more times.  You all remember me telling you how bad the skin grafts are.  It is the worst, most unimaginable pain you can think of.  They remove layers of your skin from one area of your body and sew it onto another.  Your skin is where all of your nerve endings are, and so it literally feels how it sounds.  The most intense burning, throbbing, stinging sensation you could ever imagine.  This poor child is gonna have to go through this again and again as he grows.  How this amazing toddler dealt with this nightmare continues to baffle me.  He had to wear a pressure suit practically 24 hours a day to hold pressure on the wounds and grafts, prevent infection, and promote healing.  These pressure suits are in no way comfortable.  Can you imagine being wrapped up like a tight mummy 22 hours a day?  With constant pressure being put on enormous, painful wounds on your body?

He had to be massaged with cream 4 times a day for 25 minutes at a time, and had to take a ton of medications.  He was given steroid injections to help flatten the scars and help mobility.  His mother Lucy was thrilled that her brave little man had somehow beat this monster disease, despite the odds that were against him.  However, surviving it doesn't mean it's's long from over.  Everyday she has to wake up and get out of bed and watch her child suffer.

Despite all that, she kept getting up.  She put her effort into not only helping Frankie, but raising awareness of nec fasc so that others would be helped.  She continued to count her blessings, not her hardships.  She continued to walk WITH God and not AWAY from him.  She started to think things were getting better.

Then everything changed.

About a month ago, Frankie developed redness on his back (where he had originally had nec fasc).  He quickly developed a fever of over 104 and immediately, they took him into the hospital.  The doctors did blood tests, and his CRP (protein in the body that indicates infection) was extremely high.  Even worse, Strep A was present again. (The bacteria that causes nec fasc).

The doctors told Lucy and her husband that Frankie had necrotizing fasciitis AGAIN.  A SECOND TIME.  Most doctors will tell you that it's just as likely for you to develop nec fasc a second time as it is for any other person to develop it for the first time (roughly 1 in a million chance).

When I saw the message from Lucy that Frankie had developed nec fasc a second time and was being taken into emergency surgery to remove the skin graft on his back and debride the necrotized tissue, I literally broke down sobbing and then got sick.  Everyone in our support group started praying furiously, and that's when I put up the Facebook message for everyone to pray for Frankie.  Here's a picture of Frank the Tank right before surgery.  Thumbs up.  Brave little boy.

Frankie made it through the surgery, though not without a ton of pain.  Lucy had to fight with the doctors to give him adequate pain medications, because he was screaming and they were only giving him Ibuprofin and tylenol.  Can you freaking believe that??  I understand that toddlers can't get the amount of narcotics as an adult, but BABIES FEEL PAIN TOO.  Just because they can't tell you in words where and how bad their pain is doesn't mean they don't feel it.  (And before you ask, yes, babies and children can have morphine.  There is dosing for even the tiniest of babies.)

What the heck kind of hospital would ever do that to a child, you ask?  Well, sadly, in the UK where Frankie lives, healthcare is a mess.  The hospitals are nowhere near the standards are here in the US.

The thing I'm about to tell you next proves my point.

After Frankie was opened back up, the surgeons couldn't find any necrotized (dead) tissue in his back.  They removed some tissue anyways for testing.  They figured they had just caught the infection before it started necrotizing or it was in a different area of his body.

In the meantime, Lucy started doing some research and found that Strep A also not only causes strep throat, but scarlett fever.  All of a sudden, she put the pieces together in her head....fever, lethargy, redness and rash over parts of his body.  OMG, she thought.  It's NOT nec fasc.  It's scarlett fever.

She immediately told the doctor of her concerns, and they looked in Frankie's throat.  Sure enough, there was a good amount of suspect-looking mucus.  They took a sample, and yep, it came back Strep A.  SCARLETT FEVER.

Lucy and her husband were extremely upset.  They're baby had just been put through another useless surgery, unnecessary pain, and would have to have ANOTHER skin graft.  Most people would scream and be furious and hateful, and possibly get violent.  I have to admit, if this happened to me or our future children, my husband would likely cause bodily injury to whoever was responsible. (kidding.....kind of.)

But as upset as they were, Lucy STILL THANKED GOD.  Even in the worst of it, she praised Him.  She thanked Him that it wasn't nec fasc and that he had survived.  She thanked Him for giving her a son who is as strong and brave as Frankie is.  She knew she couldn't let anger hold her down and take up her energy... Frankie needed her.  And as hard as that sounds (and is), God is gonna bless her for that.  When we trust Him in our trials, HE BLESSES THAT.

People have told me that they are surprised by my continued faith in God and willingness to praise Him, even though I've been through hell and it seems like one thing after another.  Let me just tell you, it hasn't always been that easy.  There have been times when I've just sobbed and asked God, "why me?  I cannot handle one more thing." There have been times when I've been mad.  REALLY mad.

And then, I realize that I'm still here.  God blessed me in that He let me live.  He let me keep my leg.  Most people are killed by this disease and/or lose their arms, legs, and other organs.  Yeah, I have a ton of scars and most of the muscle from my right leg and abdomen is gone, but I'm one of the blessed ones who survived it, against all odds, and got to walk again, and marry the love of my life.  When I think about what it would have been like for Jon and my family to lose me, it quickly slaps me back into feeling blessed, and not resentful.

The Bible tells us to "Rejoice evermore. Pray without ceasing. In everything give thanks for this is the will of God in Christ Jesus." 1 Thessalonians 5:16-18

This doesn't necessarily mean that we are to thank God for horrible things and tragedies that come our way.  It means that we are still find joy in our lives no matter what is happening because we have God and in Him we can overcome no matter what the Devil throws at us.  God doesn't want us to thank Him for the bad things, because He didn't send them...Satan did.  He isn't the author of evil.  But if we become bitter and angry and that becomes the focus of our life, we aren't doing what we are supposed to be doing...which is loving each other and loving Jesus.

As far as Frankie goes, he too continues to be a chosen miracle of God.  He survived ANOTHER surgery a few days ago to graft more skin onto the re-opened wound on his back. (a 10 inch by 7 inch wound, mind you.)  He did amazingly well, and our prayers were answered.  Not only did he live, but his pain has been managed relatively well since then.  God can give way better pain medications than the pharmacy can.  Somehow, Frankie has seemed to be almost free of pain since the skin graft.  Here, take a look for yourself.  Here he is playing in the hospital playroom, just a day or two after the surgery.

Even when he's tired, he's still strong enough and doing well enough to want to play.

Frankie is still in the hospital as I write this.  They are treating his scarlett fever and managing his new wounds from the surgery.  Please, continue to pray for this little guy.  He needs us.  Pray that he doesn't  feel pain.  Pray that he doesn't remember this someday.  Pray for his parents, as they are stressed and tired, but still fighting every minute for their son.  

Sunday, March 16, 2014

BIG #24- Emergency Surgery #9

Thank you for being so patient for this chapter of my BIG.  And thank you for reading the post I wrote this past week and posted yesterday about Frankie's BIG.  If you haven't had a chance to read it, check it out.  He is such a little fighter and remarkable toddler.  I will get part 2 of HIS Story up this week.  For now, here is the next chapter of mine.

If you need to refresh your memory about where we left off in my story, go here.

As the night went on after surgery #8, I continued to deteriorate.  I was hooked up to the telemetry, and it was constantly beeping.  HR way too high. Blood pressure way too low.  Fever started creeping up.  Worse of all, every time I picked up my blanket, I was sitting in a pool of new blood.  I knew I was bleeding out as the IV team came to start 3 more IVs and had me sign the consent for blood products.  Labs were drawn every 30 minutes and every resident on the surgical floor was in and out of my room.

My abdomen started to feel hard and develop what looked like a baseball sized lump underneath the skin.  The pain throbbed.  It felt like my organs were about to rip right through my skin.  I didn't cry or scream.... no.  I was freaking terrified.  I clenched the bed and shivered.  I shivered for hour after hour, praying silently that somehow this was all a nightmare that I'd wake up from.  Sleep was completely out of the question. 

I knew something was terribly wrong.  Nurses were in and out of my room checking my vitals every few minutes and every time the doctors would look at my abdominal wound, they seemed more panicked.  Finally enough was enough and they called my surgeon to come in from home in the middle of the night.  Seeing him show up at my bedside at 3 a.m. was not a sight I wanted to see.  He is one of the most prestigious surgeons in Chicago, the very best for nec fasc and burn victims.  He doesn't get called in the middle of the night unless there's a real emergency.

The residents had warned me that there was a possibility I was bleeding internally and the blood was starting to clot in an internal "bruise" called a hematoma.  I could see a baseball sized lump forming on my stomach as I lay there, and the pain was unbearable.  I called my parents, and my dad started frantically googling "hematoma after surgery."

What worried me the most was my vitals and my labs.  I knew I already had an extremely low hemoglobin and hematocrit as well as platelets from the shock and organ failure I'd gone through during my first hospitalization.  I started shaking when I heard the nurse call the blood bank and demand units of blood and platelets be sent up immediately.  "No, NOW. We need it like YESTERDAY," she said.  Luckily I had been typed, screened, and cross-matched many times before.  My name is probably well known in that blood bank after this entire fiasco over the last year.

When my surgeon ran in at 3 a.m., he took one look at me and called it.  We're taking you in NOW.  "Call the OR, emergent case," he ordered the nurse.  "Her platelets are 55," the nurse said.

I grabbed my phone and called my parents and Jon.  "I'm going into emergency surgery now. No, Jon, you can't talk to the doctor, we're  going now.

It was then that I heard the 3 words that I'd heard so many times as a nurse, but never, ever, ever expected to hear as a patient.  "CALL A CODE."

A code can mean a few things.  Every hospital has different names for these codes (or emergencies).  In many hospitals, code red or code blue is when the patient is in cardiac arrest... the code they called for me (not red, but I can't remember the number/letter they used) was because of my rapidly declining status and need for additional and immediate help to get me stabilized and into the OR FAST.  

At that point, I was the most terrified I have ever been throughout this entire journey.  I knew I wasn't stable.  I knew I was going to be put to sleep AGAIN, my wounds re-opened AGAIN, and the doctor was gonna have to start initiating measures to stop me from hemorrhaging to death.  I had already been on death's door once.  I honestly felt like I was at that door again, and this time, I might not be able to survive it.

I was still shivering uncontrollably.  I didn't know what to do but pray.  I put my hand on my abdomen and prayed that God would stop the bleeding, as He is the Great Healer.  I had nothing left but faith.  I couldn't trust my body.  I couldn't save myself by mentally being a fighter.  It was no longer in my control and I prayed that God would put his hands on the hands of my surgeon and heal me.   

Then I prayed that if He was ready for me and I didn't make it, that he would take care of Jon.  This is the first time I've actually told anyone about these moments.  It was so painful but all I could think of what this would do to my husband and family.  I prayed that if I didn't make it, Jon would find comfort from God.  I prayed that He would look Up and not Away.  

As we headed into the OR and the anesthesia started to kick in, I asked God for forgiveness and His grace and begged that He let me live and I promised that I'd continue to use this experience to witness to others.  


When I woke up, I was in recovery.  I felt the burn in the back of my throat from the breathing tube and  was immediately hit with the most intense pain I'd felt since the skin graft surgery.  I gripped the side of the bed and tried to breathe through it.  I couldn't stop shivering, as that is my body's response to pain, as we have found out.

I couldn't think of anything else besides the pain.  The nurse that took care of me was concerned with my wounds, labs, and vital signs and wouldn't take me back to my room where my family was.  I kept telling her I was okay, but she kept me there for an additional 4 hours.

The doctor explained that I had a baseball sized hematoma in my abdomen where they'd removed the skin graft.  They had to operate so deep and the graft was attached to several organs, so it was difficult to remove, and therefore, a lot of blood vessels and nerves had been severed, which explains the the hemorrhage and hematoma.  Because of the re-opening, muscle maneuvering, and nerve damage, pain was inevitable.  In order to drain the fluids and blood inside the body, four drains were placed.  Three were in my abdomen and there was also a drain on my leg.

Finally I was taken back to my room, to my family.  The pain was horrible, but I felt better being back in my room with my family at my bedside.  

I was kept in the hospital for 3 more days, to monitor the wounds, hematoma, drains, vital signs, and my labs.  I was running a fever of 100-101 the whole time.  They started several IV antibiotics in case an infection was brewing.  My heart rate was also extremely high.  My body was just having a hard time keeping up with all the trauma.  

When it was time to go home, I was worried.  I still had a fever, my heart rate was still high, and the pain was unbearable, particularly where the hematoma had been removed.  I was told I could not be standing for more than a minute or two, no showering (bed baths only) no walking without a leg stabilizer and abdominal binder and my walker.  "So what am I ALLOWED to do?" I asked Dr. C.  Not much, he said.  We don't want you moving too much because we don't want to disturb the scars and cause any stretching or tearing of the wound and stitches.  "How long?" I asked.  "Probably at least 6 weeks," he said.  No moving, running, shopping, gym, driving, etc. etc. for 6 WEEKS??  Ugh.  

As it turns out, the restrictions were the easy part of my recovery.  Little did I know that I was about to face my most painful recovery yet.  Will talk about that more in BIG #25 Final Recovery.  

Saturday, March 15, 2014

Baby Frankie's BIG. Part 1.

The past 2 months have been pretty rough in this nec fasc journey.  As you all know, I underwent my 8th and 9th surgery at the end of January to remove the skin grafts and reconstruct all of the scarring.  Basically making my shark attack looking body look a teeny bit better.  I still have scars like you wouldn't believe, but I AM BLESSED that I'm alive.  And I'm blessed because not everyone with nec fasc gets to have reconstructive surgery.  Many of the victims of this nightmare that actually survive it have to live with shark attack body forever.  Or amputated limbs.

This last surgery had complications and required additional surgery and a hellish recovery.  I've been in extreme, debilitating pain.  I wasn't able to walk, move around, go the gym, go to the store, ANYTHING for a month.  It was horrible, especially for someone whose heart is 90% running, 10% everything else.  (kidding)  But really, I'm not myself when I can't run and to not even be able to walk has been depressing beyond belief.  I've been down.  Lonely.  Feeling a little sorry for myself.

Maybe a little too sorry for myself, because God stepped in and refocused me.  Just when I thought nothing could possibly be worse than what I went through, I learned about 2 year old Frankie.

A nurse who I met through the National Necrotizing Fasciitis Foundation (there aren't many of us, so we all get to know each other) invited me into a closed Facebook group for survivors of necrotizing fasciitis.  And boy, I've gone through a gamut of emotions since joining this group.  It's basically a forum where survivors of nec fasc and their families can share their journeys, vent their frustrations, fears, and heartbreaks, and celebrate their successes.  As I started to read through the journeys of others who have walked this strange and horrific path, I cried my heart out.  Finally I had found a group of people who understood this nightmare.  There aren't many of us.  Less than 300 and that includes family members.  Still, hearing that others shared the sleepless nights, the horrific pain, the sadness of losing skin, muscle, limbs....losing what our bodies once were...the PTSD, the nightmares, the gave me hope.  It made me realize that I can too be brave enough to fight this fight and come out on the other side.

I came across the journey of Frankie.  Frankie was only a little over one year old when he was diagnosed with nec fasc.  Even thinking about it breaks me.  How can a baby be subjected to this nightmare?  It isn't fair.  This isn't a disease that you have and then one day move on from.  If you survive at all, your health is changed forever.  You likely are missing limbs, organs, large areas of limbs.  The surgeries beyond painful as the surgeons' only way to save the patient is to remove the tissue affected by the infection, which is generally skin, fascia, and muscle, and when it goes too far, the entire leg or arm.  How in the hell a baby could get this made me side-eye God at first, to be honest.  I don't have the answers.  I know that God doesn't GIVE us these nightmares.  He loves us.  It hurts Him to SEE US HURT.  They happen as a result of us being humans and this being Earth.  We aren't in Heaven.  These things won't happen there, and that is a beautiful and hopeful thing.  All we can do is trust that the things that happen on Earth are part of HIS GREATER PLAN.  That is really freaking hard to come to terms with.  My BIG happened for a reason.  It's part of a BIGGER plan that I rarely understand, although as I've fought my way through recovery, I sometimes get glimpses of understanding.  I know that we are here on Earth to practice loving each other so we know how to be more like God.  And how to love in Heaven.  And we're here to take care of each other.  Walk beside each other.  And maybe I wouldn't have learned those lessons without going through this.  I can't speak for Frankie or any other baby who undeservingly goes through something like this.  All I can do is pray and trust and do what I can to love Frankie and his brave mama and his family.  Walk beside them.  Like so many have walked beside me.

Frankie lives in the UK.  He was a normal, beautiful, blonde-haired, blue-eyed, healthy toddler when he developed nec fasc.  Last April, Frankie developed a high fever one day and wasn't acting like himself.  As his fever rose quickly to over 102 degrees, his mom Lucy became worried and took him into the hospital.  As she brought him in, she noticed a small bump on his back that had started to become warm and red.  When Frankie was admitted, he was already in organ failure and shock.  Blood tests confirmed that Strep A (the bacteria that if aggravated can turn into nec fasc), and within hours, it spread all over his back, sides, part of his chest, and legs.  The doctors believed that he developed the infection from a little cut on his forehead he'd gotten from bumping his head.  They believe the bacteria somehow got into the cut and lay dormant for a few days and then started to spread and attack.  Frankie's mom was told there was very little hope and that all affected skin, tissue, and muscle would have to be removed, and fast.  If he survived at all, this baby would have large chunks of his body missing.

After a 9 hour surgery, Frankie was still alive, although a 7 inch by 9 inch section of his back was gone, parts of his shoulder, and sides.  He was in a coma, his vital signs were still terrible, and there was still little chance of survival.  Lucy was told that "Frankie is the sickest baby in the country, and the sickest baby the hospital has ever taken care of."  How Lucy didn't fall apart and give up is beyond me.  How my parents didn't fall apart and give up is beyond me too.  How do you even get out of bed when something like this happens?  Lucy and my mom have similar answers.  You just do, they say.  You would give your entire life to take the pain away from your child.  Frankie's mom said that at one point, she whispered in his ear and told him that it was "okay to go."  She'd rather him die than struggle in unimaginable pain.  She'd die just to spare him a minute of the pain.  You keep going, because God made you a mother, and the instinct just takes over.  For my mom, she didn't stop praying.

My parents didn't fall apart when I was dying.... THEY FELL TO THEIR KNEES IN PRAYER.

Lucy says that she and her husband weren't at all religious before Frankie got sick.  But when she was told her child would likely die if not lose most of his body, she realized there was nothing she could do except turn to God.  Even in someone who isn't a Christ follower, there is a point in everyone's life where they you are faced with something that either will make you walk towards Jesus or walk away from Him.  Lucy chose to walk TOWARDS Him.

God spared Frankie's life, much like he did mine.  It took a few weeks in a coma for his tiny body to start to normalize again.  He had to have several skin grafts over the next few months to cover all the wounds.  If you remember my post about skin grafts, you remember that they are HELL ON EARTH. It is the most painful thing you can imagine.  How a BABY goes through this, I cannot even comprehend.  Frankie's warrior mama Lucy fought everyday with the pain doctors to manage Frank's pain.  She was brave and didn't stop.  Even when she knew life as she knew it was forever changed, she continued to walk forward.

She had an amazing support system.  God put people around her that helped to her to be as brave and strong as she needed to be.  THAT is why we need to take care of each other.  We cannot get through these trials on our own, and we aren't supposed to.  We aren't made that way.

Finally, FINALLY, Frankie went home.  However, he was in a 24-hour pressure suit that would put pressure on his wounds in order to help them heal and prevent infection.  His mom said the worst part was bathing him.  He would scream in pain.

He was hospitalized again several times over the next few months for additional surgeries, one was a skin graft, and one was a staple that had gotten stuck in a wound and needed to be removed.  All the while, He kept on fighting.  He kept proving the doctors wrong.

Unfortunately, Frankie's story doesn't end there.  His mother's worst nightmare came true a few weeks ago.  To be continued in Part 2.