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Monday, July 26, 2010

For 2 years....

I hemmed and hawed about going for that 6th baby of mine. I did NOT want to go through another pregnancy and risk anything, when I had so much to lose. I just felt danger when I thought of another pregnancy (for good reason it appears). And some days I convinced myself to be happy with the 5 I had. I was sure of it. But then this little bit of doubt would creep in, as I would imagine this little person added to our family; this little soul kept pestering me, and I couldn't stop thinking about the reward at the end, and then I would become unsure again. Perhaps if I thought more positively, things could go more positively and I could bring this last little person in the world? But it felt like danger. Back and forth, back and forth, back and forth I went. I have NEVER felt that way for any of my other children.

When I saw that positive pregnancy test, I was filled with joy AND fear. Wondering what the heck I had gotten mysef into.....and if it would be worth it. And after all this nightmare, after all the tears and heartache and paralyzing fear and sadness and pain and bedrest and NICU and hospital stays and surgeries and just plain craziness related to this pregnancy, I only have one thing to say.


Every tear and every fear. Every surgery so far and in the future. Its strange to look at one of your children and know that you almost convinced yourself not to have him. And then you almost were convinced to terminate him. And then you almost lost him again to miscarriage. And then you almost had to deliver him at 26 weeks (which knowing his crappy lung status at 36 weeks, is terrifying to consider now). He shouldn't be here. Anyone who had half a brain would probably have stopped while they were ahead. But I followed my heart, hoped and prayed really hard, and we have not had an easy go of it for sure. But he is here. I just want to burst into tears when I consider him NOT being here with us right now. Not seeing the sweet little faces he makes, how he stares so intently at us, it feels like he is staring INTO our souls. Not seeing how much my kids are smitten with him. Not being able to see how sweet Gavin is wanting to give him all his med bottles proudly, seeing how Rylan pats his head and calls him his Baby Ahhhnnnn. Not being able to hear Caden say proudly "mommy I LOVE my baby brudder so much". Not seeing Elise with Ansen cuddled on her chest while sucking her thumb, Kylie happily changing Ansen's little diaper while talking about the 4-10 kids she and Elise will have (so far named Vanessa, Lily, Michael and John at the moment). Not seeing Doug holding him, hearing him say that he is so happy that we added him to our family-that he is the perfect final addition. Not being able to hold him myself, smell his sweet baby smell, having him cuddle into my chest, as he happily and peacefully drifts off to sleep, with not a worry in the world.

I consider the other road I could have taken. The easier road. The far less painful road. The far less crazy road. Our life would probably be pretty simply right now, not having had to go through the last year of hardship. But my heart wouldn't be bursting with that happiness and fullness I feel, now knowing for sure I have all the kids I was meant to. I have that last baby, the one that shouldn't be here, but IS.... bc he really WAS supposed to be here, with us, in my arms, in our family, with his brothers and sisters.

2 years ago, I didn't know if it would ultimately happen. I didn't know if we could let that last baby in our hearts into our life. Thank you God for the courage He gave us to give it a try, and to move forward every time it seemed like we had nowhere to go but down. It certainly hasn't been an easy journey. But worthwhile? Oh yes. I would do it all again in a heartbeat, just to bring him into our lives again; to complete our family, to see that joy in my children's faces, to see him cuddled in the arms of alll the family and friends that love and appreciate his little life as much as we do, to hear those little content sighs as Ansen lays snuggled into me. 2 years ago, I didn't know what true hardship was, nor did I know what true joy could feel like. And now......we do.

Friday, July 23, 2010

5th debridment done and over with....

These surgeries are getting OLD!!  This one was actually located in a new wing of the hospital, called "daystay".  It was pretty nice there, compared to the rest, down in bottom floor of hospital.   As I was being put to sleep the anesthesiologist told me to relax, that I was breathing "Hawaiian air".  Its funny that I was terrified of being put under general anesthesia, yet here I am....haing had to have to general 6 times now since June 3rd.  I am practicaly a pro now.  When I woke up, it was definately 2 percocet worthy of pain.  Headed home to be with my family, knowing that I had to spend the next day alone with the 6 kids, recovering from this, since Doug has used up ALL his time now.

The next day (yesterday), the visiting nurse came and she measured.  Wound went from 17cnX7cm to 12cmX4 cm.  It also went from 2 cm deep to 6 cm deep, thanks to all the debridding.  Gosh, I hate the word and I hate what they do.  They use scissors and scalpels and pretty much chop and slice any bad tissue away until its nothing but red beefy looking stuff.  The heathy stuff.  So they closed up a substantial amount of this BUT its covering basically nothing but a hole right now....they say that tissue will fill up and in now, eventually to top of skin that they closed.  I wonder how long this will take.  I keep eating my protein, drinking my water and trying to rest as much as I can.  Was really hard to rest yesterday with Doug being gone and the kids being PSYCHO.  I know they are just sick of this all, as sick as I am of it all.  I had to take quite a few percocet yesterday and I was so drowsy and the kids were acting so badly....the morning was very overwhelming.  I finally got the twints to nap, and Ansen to nap in my lap....had 3 big kids turn on a movie, and I was able to lay back and actually rest for a few minutes.  Thankfully, my friend Jenn came over for the afternoon, to distract my psychotic kids and give me something to make the afternoon go by faster.  It was a LONG day, filled with lots of percocet.  And then Heather (visiting nurse) came back and said that one part of stitches looked like it was being really stretched (like that part could let go) and that I REALLY needed to rest as much as possible (which she admitted was the impossible task with all the kids).  I have been really trying not to stress my stomach much, and I am hoping that part doesn't look any worse this morning.

This morning I woke up with no pain meds in my system and I wasn't in tears/clutching the arms of couch kind of pain, so that was nice.  Definately still painful but some pain has subsided since yesterday.  Might be able to alternate percocet and ibuprofin...the straight up percocet all day makes me so nauseous. I am alone with all the kids again-Doug is taking a fire physical an hour away.  Can't wait til he is home, so I can really rest...but still many hours to go til he gets here.  Ansen will only sleep in my arms now...I might have created a monster....but at the moment, its easier to have him right there anyways, so that I can take care of him without having to move around too much.  Right now, he is napping curled up on my left side.  As long as he is on me, all is right with his world and he will peacefully sleep for hours. 

Throughout all this, no matter how difficult things have been, I have yet to look at Ansen and wish for the easier road.  He was totally worth it.  This journey has indeed majorly sucked at times (most of the time), I am sick of being in pain, tired of operation after operation, just longing for a "normal" life again.  But then I look at Ansen, and he was most certainly meant to be here.  He completes our family and he completes my heart.  I am not in an easy place right now at all, but Ansen has his life bc of it and his life blesses/enriches my life so much.  Just have to keep enjoying my blessings, throughout all the difficult moments (especially through pain-thats one of my biggest hurdles right now).

I just want to heal now and move on. I am hoping that our trial without wound vac will prove to be more helpful to my healing.  Right now, Heather is packing the inside of this with sterile gauze and saline, twice a day.  Here's hoping my tissue is not hindered by any more more dead stuff in there and it can grow, grow, GROW and fill in those areas that need to be filled in.  What a blessing it will be to one day have an intact stomach again.  I get giddy thinking about it. 

*Thank you God, for helping me live through this all, so that I could still enjoy and cherish the world and people around me....all I ask now is to PLEASE help my body heal now.  Thank you.*

Tuesday, July 20, 2010

2nd opinion at Brigham and Women's

Well we got there and that place is crazy. Not sure if normal hospitals are like a million floors tall like that, but our home hospital is certainly not. We got very lost trying to find wound care. We FINALLY found it and went in, filled some paperwork and then I got called in. I explained everything to a Physician Assistant, and she took off sponge (holy pain, that thing was stuck to the whole side and had to be pretty much ripped off). In just 24 hours, the odor had returned and was stifling. We told the PA about the wound vac break we had taken this weekend and how everything had actually been going great then, and she said sometimes you need to take breaks from the wound vac for healing. Anyways, she had mentioned them *maybe* doing a culture, since the hospital sent me back with no records of any of those. Then we waited for the dr forever....and when he came in, he was very in and out. He said that he thought that our home hospital was doing a sufficient job and that we could our wound care with B&W, but that he didn't see why since in his opinion, they would do the same as them. I asked about the dying tissue and he said that this was probably already dead from the first infection (which I still don't understand bc they keep debridding it to the healthy stuff over and over again). Everyone keeps telling me that, that the dead stuff was already there. Its frustruating. I asked about the bacterias and cultures and he said they would only do them if I had pus coming out, and the brown drainage didn't count as pus. I asked if this was all normal then, and he said no, it was not normal, but neither is my wound. And that my body is reacting to the major abdominal trauma its been through, but its not surprising to him. So all in all, that was how it went. I kept crying a bit, bc I was just so frustruated to be hearing the same thing again. He asked if I had a plastic surgeon working with us, and I told him not that I have met/been told of. He reiterated that my drs appear to be doing the best they can with this type of wound and that it would just take time. The dr left and PA recommended that I might want to stop breastfeeding, bc my body is putting a LOT of effort into that, and its most certainly hindering my wound healing. Of course, breastfeeding is the one and only normal thing I have left after all this, and I am not ready yet (and not sure if I will be) to just throw in the towel with that. That kinda REALLY upset me...after all we have been through. She said that she would send a fax to my dr that they recommended a wound vac break from time to time. And that was that. I was a wee bit upset about all this, but I kind of figured this was how it was going to go. So we went to pick up our van from valet, and they said it would take 15 min. I just wanted to get in the car, but it never came. Doug went back 3 times to check on where it was. One hour later, they finally found the right people to get our van. They were looking in the wrong lot (since our 12 passenger van was in the oversized lot I guess-not where they were looking). Very frustruating.

We called our visiting nurse and she came over at 5pm, bc they didn't put wound vac back on and I needed the dressing changed. I honestly think she is the ONLY one that really gets this. She does TONS of wound vac changes and she says they never smell like mine...she was surprised that they were so laid back about the smell. All weekend she did the Dakins solution, and everything actually started looking better, there was no smell, drainage had gone back to pinkish-which is great, no spreading of dead area the whole time, in fact Dakins got rid of some of the dead stuff in there, and in 3 days wound shrunk by a couple cm. After 24 hours of wound vac back on, the smell came back with a vengeance, drainage was turning back to brown, and the dead area had now spread in size. We are all in agreeance that the wound vac doesn't seem to be doing anything positive for me at all right now, and visiting nurse said to make sure I talk to dr about this tomorrow before surgery. I am hoping I will see him, last time I didn't see him before or after the surgery. I don't want this wound vac back on me after the debridment...I really think it might be what is causing all my issues-don't know the science of why it might not be working, but this definately proves it to me (and nurse). She said talk to dr and have them switch me to dressings (Dakins if there is a smell, saline if there is not a smell). So hopefully I can talk to dr tomorrow before surgery and hopefully dr will agree to give me a break from the wound vac, give it a week of dressings, and see how my wound does with that. Wish me luck.

All in all, I was really bummed about 2nd opinion (although I was really expecting it to go that way), but maybe this weekend/visiting nurse experiement with vac off/dressings on has helped us come up with another potential solution to breaking this nasty cycle. Gosh I really hope so...I just need catch a break one of these days/weeks/months.

Will I get some answers at my appt???

Less then 12 hours til my appt at Brigham and Women's.  Will I get some answers, or will this be a big flop of help??  I am SOOOOOO afraid that I am going to go in, they will look at wound and say "well that all sounds normal" and send me on my way.  *sigh*  I just want answers and I want everything in me to stop dying.  Nurse put the wound vac on less then 24 hours ago and its starting to get that same vague odor to it-the dirty diaper one thats never good.  Its very faint, but thats how it starts.  Will there be something newly dead in there when they take this off for that 2nd opinion??  Augh.

SO I got my medical records and they didn't even put any lab/culture results in there.  I can't believe it...only one of the most important parts.  I found written in a part though that wound culture: enterococcus and tissue culture: streptococcus for my 1sr hospital stay post hysterectomy.  I am hoping that having those 2 bacteria names will be enough of a clue into this for now.  Enterococcus (from what I have read) is VERY resistent in antibiotics.  Wonderful.  And my daughter all the sudden has strep throat, out of the blue.  Is that a coincidence??   Is my body still fighting these bacterias?

Saturday, July 17, 2010

getting through those why me's....

*sigh*  To go through a pregnancy dealing with placenta percreta is enough of a nightmare to last a lifetime.  To have your baby intubated for a week and in the NICU for 23 days is tortuous.  To have a baby home on meds every 3 hours, as well as necesitating monitors and oxygen is a challenge for sure, for the healthiest of people.  And to have your entire wound opened up in surgery,to have it keep going bad on the inside, to have it continuously scraped out clean over and over and over again in surgery after surgery, to face a recovery of 6-8 weeks after you get the problems on the inside under control.....well I don't have words to describe it.  And to deal with THIS ALL, one after the other...without a break in sight.  Well, I can say its absolutely hellish....nothing I would wish on my worst enemy.  Positively crushing.  I try to remain positive and hopeful, but my spirit is breaking with this all.  WHY ME?  What have I done so bad to deserve all this horrible stuff to happen, one thing after another.  I fought for Ansen's life and I can hardly take care of him by myself now.  We have used up all Doug's FMLA time, he has no sick/vacation/personal time left after what we have ALREADY gone through.  So now I will have to face future hospitalizations/surgeries/recoveries by myself, unless they fit into his work schedule.  Well unless he wants to get fired that is. We had much help back when this all started....but truthfully 16 weeks later, just about everyone has disappeared now.  Can I blame them?  This thing is never going to end.  I PROMISED my kids during the bedrest that life would resume back to normal quickly after Ansen was born.  Now I wonder if there will ever be a normal ever again??   It's very discouraging.  Why me?  Why us?  Why my family?  Did we do things in our life that made us deserve this?  I try to stay strong and believe that God will lead me through this...but I would be lying if I didn't admit that sometimes I think God has forgotten about us here.  When I tell people about our string of "luck", its almost laughable.  I mean, WHO has this kind of stuff happen all at once?? One after the other after the other??  REALLY???  Everyone expects me to be the same person I was before all this.  Well sometimes I have a hard time finding that person.  I try to stay positive and look forward to the future...but every day when I am continuously slapped in the face by the pain of this-when I have to take meds first thing in the morning and wait a good hour to feel decent again, and the fact that I am about as useful as an invalid.....well the "why me's" come out more and more and more lately.  And a little bit more of my positive optimism just *poofs* away.    I have been trying to stay myself, looking forward to this 2nd opinion on Tuesday, hoping its my knight in shining armour....the hopeful light at the end of the tunnel.  But what if its not?  What if its nothing but another dead end?  I worry about that, bc yet more hope will *poof* away.  I worry about what nightmare we might have to face next, since good news doesn't seem to be scheduled into our lives at the moment.  How could fighting for good (in my sweet baby boy's life) result in so much bad, one thing after another after another?  It just doesn't make sense.  But much in this world doesn't make sense I guess.  God doesn't give you what you can't I have heard....pray that that saying is true for me and my family.   Because we have been having to handle too much lately.  We are all weary and feeling eun down.  But how can I complain when so many others have to deal with so much other negative stuff in this world.  My heart hurts for so many other's that are going through difficult journeys in their lives at the moment.  What right do I have to feel sorry for myself?  The why me's are certainly not something I enjoy feeling, not something I want in my life.  I just hope that Tuesday IS the beginning our light at the end of the tunnel, so that we can once again feel some hope of normalcy one day....even if its no time soon.

heading to Brigham and Women's hospital on Tuesday...

Well we have had enough.  When Heather (visiting nurse) came yesterday morning, she noticed the smell and the fluid, and then uncovered wound from wound vac, to find two new necrotic tissue areas, both quarter sized.  She said that she couldn't put the wound vac back on with these two areas, since she didn't want them to just keep spreading.  So she came up with an alternate solution for the time being.  And its time for a second opinion on this nightmare.  I actually ran into the wound care dr yesterday as I was working on signing releases for my visiting nurse Heather opted not to put wound vac back on bc of it, and he seemed unphased.  Actually said "Well these things take time" followed by " see you at surgery on Wednesday".  I know how to be patient and such, believe me.  But I don't think I have even HIT the healing stage yet.  I have had this wound vac for 3 weeks, and all the new tissue I grow gets "debridded" or scraped out every time these necrotic areas show up.  And this happens EVERY week.  I asked the dr at my last appt why tissue keeps dying/going necrotic inside me and he said "I don't know".  Isn't that something that we should be looking into at this point??  Wednesday would be my 5th debridment surgery since June 29th.  That is less then 20 days. 

So anyways, Doug called around to Brigham and Women's and Mass General Hospital (two of the BEST in the state-located in Boston).  Mass General was actually not as friendly as Brigham and Women's, telling us we would probably need a referral and not to expect to get an appt for 2 weeks.  Brigham and Women's gave us an appt on Tuesday, telling us to bring medical records.  So B & W it is.  I am nervous.  Especially since I am "supposed" to have surgery the day after.  I don't know if B & W is going to keep me there-really get into it and get some way more indepth answers or if they are going to simply concur with my doctors here.  Its 2 hours away from us, so I don't want it to be a wasted trip.  I hope they will test new things and help us get this dying tissue mystery solved.  I just want to heal.  That is it.

When I went in to sign releases for medical records, I had to do several separate ones.  One was for maternal/fetal medicine.  I was sent to the desk, and then one of the nurses that cared for me came out and had me come in her office.  She then asked what was up.  I told her straight up that I am just looking for 2nd opinion to see if there is something we are missing here on this wound.  I don't know if she was concerned I might be thinking lawsuit stuff or something, to pull me into office, but  i really have no desire for lawsuit or money.  I JUST WANT TO HEAL FROM THIS.  I want to resume living life in a "normal" fashion.  I am a crappy mom right now.  I am a crappy wife right now.  I am a crappy everything right now.  All I can do is sit on couch all day.  And then I sleep on the couch at night, with pillows to keep me mostly upright.  I have to take pain meds every day, which make me drowsy and feeling a bit loopy at times.  I can't even pull my kids into my lap for a hug.  I can hardly change a diaper, bc its hard to sit upright.  My kids make a lot of their own meals (cold meals of course) when Doug is not home.   Cereal and sandwiches, almost every day here.  I just want to be able to move around comfortably again (with a closed stomach), and be a mom and do my mom things every day.

So we will see how appt goes on Tuesday.  I don't know what to expect but just hoping for the best here.  Heather (visiting nurse) definately recommended going for a 2nd opinion as well, and she has been with us since the beginning.  She has stopped the wound vac for now, and she is dressing my wound with a dakin solution, which is diluted clorox bleach and baking soda.  Its supposed to kill any bacteria in there, as well as help remove some of this dead tissue.  It sounds scary, but she called up several experts on the matter and they all recommended giving it a try.  I was most certainly fearful of pain when she went to put it on my wound, but it didn't hurt (well nothing more then it already does 24/7).  For the whole weekend (today and tomorrow) I have to have this solution applied twice a day...and we will re-evaluate whether or not I can have the wound vac put back on on Monday.  Heather will be here in about 20 minutes and we can find out what a night's worth of the solution did to my wound.  Hopefully nothing but good....or at least with me staying the same.  I will take that. 

3 more days til we can hopefully get some more answers.  Monday, I pick up my medical records and I can finally see all the different bacterias I have been growing inside this wound (back when they were checking at the beginning of this all).  Just hoping that God will help lead me to the right people, so that I can finally get recovered from this and one day move on.  That seems almost like an impossible feat at this moment. 

Friday, July 16, 2010

I can't do this anymore!!!

Brown coffee colored sludge is coming out of wound vac AGAIN and its starting to really smell AGAIN (like a bad baby diaper).  The only thing that I don't have going yet is a fever.  I can't keep doing these debridment surgeries over and over again.  All they do is find more dead tissue...and yet no one is concerned why things keep dying in there.  I won't let them remove anything else until we figure this out.  This is absolutely ridiculous now.  4 surgeries AFTER my cesarean hysterectomy, and I am not even close to road to recovery yet.  I am starting to lose faith in the doctors caring for me.  We keep going through the same cycle and no one sees any problem at all with this, except me (and Doug...and mil, and some friends, etc).  But my wound care dr still seems to think everything is going peachy.  I haven't had any abx for weeks (except for a dose of IV vanco during last debridment surgery).  I think there is something BAD in there, still killing tissue....and I am frustruated that my doctor thinks continuously dying tissue is fine.  Thats what it smells like again here right now.  I will put money on the guess that there is more dead tissue in there again.  After they JUST scraped everything dead out last Friday....for the fourth time. Our wound care nurse is coming in 30 minutes and she always tells it as it is, and I KNOW she is not going to be happy by this at all.  I don't know what to do anymore.  We are trying to get a 2nd opinion at a Bostom hospital (Brigham and Women's and Mass General-both top hospitals in country).  B&W said they could see us on Tuesday.  MG said to expect weeks til we can get an appt.  I want to go to appt on Tuesday, but I probably won't make it til then before I will "need" another debridment surgery.  What do I do?  I am scared I am ultimately going to die from this if we don't get a handle on it.  I have months of recovery still left AFTER we get this whole dying tissue thing ever figured out.  I am overwhelmed and discouaraged and having a really hard time with it all lately.  This last few days.  I am sick of being in pain, I am sick of having more and more of my stomach removed week after week, I am sick of having all this crap attached to my stomach 24/7, I am sick of sleeping on couch, I am sick of needing help to get up, I am sick of seeing the low grade fevers, brown drainage, smelling those bad smells.   I am sick of going into the hospital/having surgery and then finding out a week later that none of it has done any good at all.  God, I need you now, more then ever.  I need you to lead me in the right direction, to the right doctors, to the right treatments, so that I can finally start recovering from this nightmare.  Please God, be with me and help me.

Sunday, July 11, 2010

I had to go back into hospital on the night before Elise's 6th birthday.  Brown sludge started coming out of my wound vac, and the wound started smelling again.  I was so sad that this was STILL not over yet.  I had Doug run out and get cupcakes for Elise, and we did a quick little birthday party for her, bc we didn't know if would be home at all that next day.  Elise said it was the best birthday ever.  She is just so happy, no matter what.  We headed off to the ER and it was a madhouse there, but they got me in really quick, which was a nice surprise.  I ended up seeing the dr I saw when I was 26 weeks pg with Ansen and in the hospital.  She is pretty young with dark hair and she is just very sweet.  She called oncologist and talked with her what to do and they decided to run blood tests, take out vacuum and put on a honey dressing (yep real honey) and wait til the morning til the wound specialist could take a look.  She took off vacuum (OWWWWW PAIN...sponge was so stuck in there and she really had to rip it out).  She said that almost all of wound looked fabulous, but there was a part at bottom that looked dark brown and not good (it ended up being that darn dead muscle).  Yep, it was liquifying and making its way out on its own.  So I had a room upstairs on the 6th floor of hospital....looked like something out of a Stephen King movie (usually I have stayed on the maternity part of hospital), but I got to stay with my baby and Doug, so all was good.  The next day, wound care dr looked at it, agreed that it was just that dead tissue from before and decided to do next week's surgery that day instead.  So I headed off to surgery pretty quickly.  I saw a lot of familiar faces in the pre-op (i have been there way too often this last month) and they all remembered.  Went through all the familiar put to sleep stuff and woke up IN PAIN!  I normally don't hurt much after these surgeries, but it felt like my skin was on fire and in pain.  I found out later that all the rest of the dead stuff was cleaned out and wound care dr wanted to put more back together then he did, but he couldn't bc the skin was just too thin the middle area.  The parts  he did get back together he definately had to stretch to do so and my skin was burning  bc of it!  For the rest, of it, I am going to have to have a skin graft to close.  *sigh*  Going to find out more about that Wednesday.  I can't believe it can't close, but then again, after needing to take 2 percocet every 4 hours for the first 1.5 days due to pain, I can believe it I guess.  The pain has finally chilled out again, and I only really need motrin for now.  ALthough tomorrow is another dreaded sponge change augh, so I will be popping those percocet again tomorrow for sure.  Above is stomach before and after July 9th.  The after picture my stomach is even more swollen from the just happened surgery, I swell up like crazy every time they cut into it.  *sigh*  Besides that, it doesn't really look THAT much different from these pics hole wise wise.  But from my view, hole looks smaller here.  I hope its less painful with the wound vac change.  I have visiting nurse coming tomorrow and then I go back to wound care center on Wednesday to find out the plan and have this sponge changed again.  I HATE having sponge  changed and I hate everyone digging in there.  :(  I just want everything to heal up normal sooner rather then later. 

And my little chunky monkey now weighs 8 lbs, 8 oz and is content just laying with his momma all day and night, nursing and sleeping.

Wednesday, July 7, 2010

Wound care dr appt today

Had the vacuum and sponge painfully removed (ripped out, since it was really stuck in there), and had my wound poked and prodded at.  I can't even express how much I hate this part of the whole thing.  So the Dr. came in and he pointed out that I have a muscle in there that looks like it died.  Goodie.  I asked what would happen with that, and he said A. it would liquify and cause problems/infection, cause that smell from before, and visiting nurse would certainly send me back to hospital or B. it would do nothing and healthy material would grow around it.  With the luck I have been having, I am placing money on scenario A.   *sigh*  Right now, dr wants to leave it alone and give me another week of the wound vac, while hoping for the best.  I have another surgery scheduled for next Thursday.  At that surgery, they will most likely remove that dead muscle, any other dead material and they will close this hole up a bit more at the top and bottom, making for a smaller wound.  I am kinda excited about the "making a smaller wound" part of the surgery.  Not looking forward to more general, more pain, etc.  But I will do what I have to do to one day get normal and recovered here. 

Now I just have to hope that that dead muscle doesn't start up another infection in there.  Its right there in the open, being looked at every other day, so they will know right away if it does.  And thats reassuring I guess, as much as I hate having this all taken out and being poked and prodded in this sensitive wound area.  Have I said how much I can't wait til this all a distant memory??  One step at a day at a time...sometimes one hour at a time....

Tuesday, July 6, 2010

Not for the weak of heart....SERIOUSLY graphic

This is my before and after infection picture.  It makes me sick to look at it myself. And who cares about belly buttons I know, but I miss mine...not that I ever really cared about it before.  Just mourning it still though.  The black thing inside mside is the sponge, that is connected to the wound vac.  That is what has to be painfully removed and replaced every 2 days.  Every day I wake up in pain and I am daunted by the fact that I still have many, many, many weeks left of recovery,   And I can't take a shower again until this is all healed.  Showers are my escape to go relax for 15 minutes of my day (even when I have an audience, something about that soothing hot water).  Doug now has to wash my hair in the sink and I guess I will just do a sponge bath kind of thing.  NOT the same.  I go through many feel sorry for myself moments throughout the day, but then I snap out of it.  It could have been worse.  I am alive.  After placenta percreta AND a massive bacterial infection/abscess hidden within me.  In 2 months, hopefully I will finally feel back to much as I can after all this.  I knew this was going to be hard, but I didn't think it would be THIS hard.  God is most certainly still with faith carries me when I don't think I can take another step forward with this all.  But I am not going to lie.  This sucks.  This hurts.  I am sick of having a heck of a time getting up out of a chair, hurting every move I make, being connected to wires that I have to carry around 24/7, having these tubes that are sucking out fluids out of my wound 24/7....none of it is easy at all.  For short, fleeting moments, I will think "boy, did I piss off God or what to deserve this".  But my heart always comes back to the truth of the matter.  God has worked miracles for me and Ansen, and this will pass.  Others have had to go through way more painful journeys, both physically and of the heart.  6-8 weeks of this may feel like eternity, but it WILL pass eventually. I gotta keep believing that...and hoping and praying for others who are having as hard/if not harder journeys then I am right now.

Tomorrow I have an appt at wound care center, so they can pull this all apart  and make sure things still look right inside/all around.  I am scared of going in and finding out they need to cut out more.  And not looking forward to the pain of it all either.  It makes me feel sick to think about taking any more steps backwards with this mess.  I just want to recover from this all.  But in the end, I will do whatever I have to, to ultimately be there for my kids and Doug.   And so I keep taking steps forward, one at a time, even when I don't want to.  Thank goodness I have my kids, who help distract me for moments throughout the day from this mess.  I am very blessed to have them all.  And when I hold Ansen and he stares at me, it feels like he can see right into my soul.  He gives me strength, ...even when sometimes it feels like I have none left.  So thankful for my life, my children, my husband, my friends, my many blessings that I need to concentrate on while I trudge along this not so very pleasant at all, painful, feels like it will last forever and never end, path.

Saturday, July 3, 2010


well I had another surgery yesterday and they checked everything within me, they

removed a bit more, and my insides are looking healthy now. I still have a HUGE

open hole to my stomach that is absolutely disgusting to look at, and there is

this tight plastic wrap stuff over it with a vaccum attached to it that is

sucking out any kind of fluid. they tell me this will be completely healed in

6-8 weeks. Hard to believe now, but I am feeling good and just happy to be

home. I had to have a transfusion in hospital bc my hemoglobin was only 7. I

am now on iron pills at home as well. I have visiting nurses coming again to

take care of this, and then I have to go in for yet another surgery on

Wednesday, as an outpatient. Lord knows how many more times I will have to be

put under before all is said and done. The whole thing sucks, it has majorly

crushed my spirits at time, but I am still celebrating that after two life

threatening situations, I am still alive here. God must still have a plan for

me yet. And I look at Ansen and he is still my miracle baby. I would do it all

again for him, as hellacious as it has been. I have been told I have a REALLY

high pain tolerance, bc all I am taking right now is motrin. I am okay as long

as I don't look at my stomach. I might have my husband take a pic and one day

after I am ALL recovered, I will post it...although I am sure none of you would

want to see it. My kids wanted to see it and then just stood there in

horror...I have never seen my first son so quiet ever before.

Anyways, so thats how things are here. Just enjoying being with my family,

taking it easy, have to drink lots of water, eat lots of protein, and take my

antibiotics regularly. I can't fathom what my stomach will look like after all

is said and done....its hard to picture since there is that giant hole in it

right now. Oh well. Good thing I never cared much about it in the first

place....wasn't planning on wearing any bikinis this lifetime anyways. So that

is what is going on here. Thank you for all the thoughts and prayers...really

appreciate them!

Thursday, July 1, 2010

the never ending nightmare

To think that I "thought" that I was healing so fabulously from my cesarean

hysterectomy. I had that teeny tiny open part of incision (was 2 inches, but

nurse coming to pack it twice a day had gotten it to 1 inch) but she was still

concerned by the great quanitiy of wound fluid pouring out (so much so that she

didn't want it to close anymore once it got to 1 inch and she was packing it to

stay open). I went to my maternal/fetal dr a few times about it and he thought

it looked great. Even the nurse said that the would fluid was the good color

and such.

So on Monday visiting nurse showed up like always, she was in a cheerful mood,

and she took off my bandages and unpacked wound. All the sudden, in a quiet,

very serious voice, she told my husband "give me the phone". It was a little

bit worrisome for sure. She got right on the phone with my dr and told them

that I needed to be seen immediately, right this second. When she got off the

phone, she showed me the bright yellow fluid pouring out, and the fact that it

had now doubled its depth overnight, as well as the smellled

absolutely HORRIBLE! This was all an overnight change. She told me they might

try to talk me out of it, but I NEEDED a CAT

So I went into appt, feeling sick. And my dr agreed that it smelled very

infected...and he took a swab to test for bacteria. He admitted me immediately,

but said that it might just be something that woudl pass with IV antibiotics. I

mentioned that nurse said I needed a CAT scan, but he said he wanted to wait and

see what gyn-oncologist said about it. She didn't end up coming in til much

later in the day, and she was talking it up, until she opened up bandage and

then she got all serious and was like "this might be very serious, you need to

get into a STAT Cat scan". So I had to wait til they had an opening and they

had me drink 3 of these contrast drinks. At least a CAT scan is much quicker

then an MRI.

Gyn-oncologist was reassured that this infection hadn't gone beyond the faschia

(internal girdle that kept organs like intestines in), but that there was

definately some fluid build up showing in the CAT scan, about 8 inches long. I

was told that I would need surgery that next morning. By this time, the stuff

coming out of me was now green and the most foul smelling stuff I had ever smelled like something died inside me and I couldn't get away from

that smell. They started me on IV antibiotics that night, bc I started to get a

fever and cultures came back growing all kinds of different bacterias.

I went into the surgery terrified the next morning. And when I woke up, I had some kind of bad

reaction to the pain meds they had given me. They had tried to give me a

morphine pump, but they found out later it was broken and just pumping extra

morphine into me. I was doing all kinds of psychotic things, having trouble

breathing, eyes rolling behind my head while awake, throwing up. Thankfully

someone FINALLY figured it out and turned off the damn pump, and I woke up at

about 3 am this morning, feeling "myself" again. Still had no idea what had

happened, but I was afraid to look. This nice nurse came in and helped me pump,

and gave me some toast (which I then threw up). She explained a little about the

wound and such, but later on that morning, the gyn-oncologist came in and told

me about what they had found. She had actually never seen anything like this

happen. My top layer had healed so beautifully, but EVERYTHING underneath had

been dying for weeks now. EVERYTHING, under my entire 14 incision had to be

removed....and then much more around the area, and some skin tissue as well. My

belly button is gone. It was part of the necrotic tissue. I am now back to

being cut end to end, but they have the two ends cinched together (making like a

"hole" in the middle", with a big sponge attached to a womb vac in the middle.

I talked to the wound specialist today and they are going to go back in Friday,

put me under, take out this wound vac and make sure no new bacteria/infection

occurred, if everything still looks good, they are going to change to new sponge

for wound vac, I will go back under Monday for them to do the same...and then I

will have a visiting nurse coming to change this sponge 3 times a week for a few

weeks, followed by another surgery where they try to ultimtely put everything

back together again.

This is a NIGHTMARE. I have a big gaping hole in my abdomen and I am stuck in

this hospital God knows how long. I

am just sick of it, I feel like I already put in my time to recover and here I

am, with something even worse now. The gyn-oncologist and maternal fetal dr

worked out a deal with the maternity floor to let me stay here with Ansen and my

husband, just bc they both felt so bad that Ansen had just gotten out of NICU

himself. Taking care of him in here is about the only bright spot of this right

now. But I keep trying to remain optimistic....keep trying to reind myself that

it could have all gone MUCH worse. What if I hadn't had that little tiny open

part of my incision and my awesome visiting nurse bc of it. I probably wouldn't

have known about this until I had gone septic. That is so scary. :( I need to

stay optimistic and thankful that as bad as things may seem, they could have

gone much worse. I am very lucky to have quick acting drs and nurses

surrounding me, as well as a wound center and specialist now working on my case.

So thats about it for now. Definately missing my other kids, not enjoying this type of recovery at all, and

just want to be normal again one day....