Cardboard testimony

Despite...

the nonstop eating of my boy, and what many times feels like nonstop cranking out until he is eating, he has had some moments to show off his newest accomplishment-the SMILE!!!   His smile makes my heart sing-nothing like seeing this gift from God smiling at me, reminding me of how worthy this battle has been.  Not a day goes by that I don't appreciate what a miracle he is to me and our family!

I brought him in to pedi early this week, thinking he might be starting to have thrush, but was told that it was instead cysts on his gums.  They haven't spread, so maybe the dr "was" right (I didn't believe him at first and was waiting for thrush to start spreading like crazy.)  When Ansen got weighed, he weighed close to 12 lbs.  Considering he weighed 10 bs, 6 oz 11 days earlier, I now have a pretty good idea of why he has been eating like a fiend, day after day, hour after hour.  He eats VERY often all day now, and once 8 pm hits, he falls into a deep coma and sleeps for 6-7 hours.  As exhausting as the nonstop eating is, I realize its for a worthy cause, and I appreciate that my nursing days are numbered.  This IS my last baby and I am going to miss all this one day (right?? haha) 

Wound wise, my primary visiting nurse came back from her 11 day vacation, and she said my wound looks fabulous, its much shorter and much of it is just superficial now.  She thinks it won't be "packable" for much longer (there is only one deep spot left, where my belly button used to be...and thats only 2.5 cm deep).  When my wound is too shallow to pack, then we will have to change my treatment plan to just having it covered and washing it off daily with showers.  I could go for that (since right now to take showers, I have to use saran wrap and tape to tape up bandages and its actually not all that fun/I am certainly not willing to take daily showers but of course way more fun then the NO showers I was allowed with wound vac).  My nurse also changed me to once a day (vs the twice a day I have had for like a month).  It is so nice not to have to worry about night visiting nurses coming.  Makes me feel a little bit more normal!  I thought about posting a pic here on my blog of it now (vs. before) but truthfully, I haven't looked at it once myself (except for when it had the wound vac sponge in it way back when).  I just prefer not to see it, but I have Doug tell me all about it after.  I might have Doug take a pic now and save it, and then when its all close, I will post both pics (bc I KNOW everyone is dying to see what a stomach without a bellybutton looks like, I know I am curious myself).  We'll see.  Regardless, I am glad things are still heading in the right (positive) direction.  July was such a horrible wound month, and August has been so much more positive.  I am hoping September will be the month I am finally healed from all this!

The wound vac debate....

I have had quite a few visiting nurses that are all gung ho about how wonderful the wound vac is, lamenting over the fact that I don't have one on.  There is one especially that would be put in on right this second if I asked her.  Every time I see her, she is all about the wound vac, telling me how I need it back on right away and why don't I have it on and why isn't my primary nurse advocating for it. I tried to explain the issues I had in the past with it, but she said everything looks so pink and healthy in there now and that means it should be put back on, preferably NOW. 

Mmmmhmmmmm.  It looked pink and healthy after each of the first 5 surgeries I had as well.  And then they would put that wound vac on, and within a week (usually less), my wound was filled with deep layers dead, yellow tissue that necesitated another debridement.   And those debridements would remove many cms deep of tissue, each and every time.  So I would start to heal/have it all taken out/start to heal/have it all taken out.  After the last debridement, my wound was 6 cm deep again (ike it had been from the start a month ago).  In the last 3ish weeks since I have had the wound vac off, my wound has healed to less then half the size, all the tissue has remained pink and healthy, any little areas that starting looking "off" were taken care of immediately with use of the Dakins solution, and best of all, I haven't needed another debridement.  No surgeries in almost a month.....its been glorioius!  And I would want to put the wound vac on......why???? 

I am so glad my primary nurse is on the same page as I am in regards to wound vac.  I only have these wound vac crazy nurses once or twice a week and its exhausting to try to explain why the wound vac may not be in my best interest (and then I am alway assured that that was then, and this is now...and it will heal up quicker with it-so better get it on asap of course).  Yeah, I heard that before.  My primary nurse advocates on my side about it, bc she saw the very bad I had to deal with it.  She doesn't understand what the problem was, but she understands there IS a problem with me and wound vac, and her motto is 'if its not broken, don't fix it'.  Dressings seem to be working/wound is healing fabulous now and I am just so grateful to have a primary nurse that is such a positive advocate for me-I am having MANY more days now that I can start to actually imagine I might one day be healed.

p.s. last night, I was watching one of my fav. shows, Boston Med, and when I went into my 2nd opinion and met with a dr. who told me that I should try going without the wound vac and see if I have any improvements (take a wound vac break)...well he was on Boston Med, assisting with the first ever face transplant in New England).  CRAZY!!! 

the most held baby in the world!!!

Do I need any more proof??  When I put Ansen down (in the moments that I might need to use the bathroom, make something {easy}for dinner, etc), its a mad dash in regards to who gets to pick up Ansen.  The kids are absolutely smitten with him, and usually a fight will break out over how Kylie held him 9 times, but Caden only held up 7, whereas Elise held him 8 times....yes, they keep track all day!!!   Every one in this family appreciates that Ansen is a gift to us, and it makes my heart burst with joy when I see my bigger kids chilling out, with Ansen cozily snuggled in their arms.  He feels their love.  He feels all our love.  He is surrounded by love.

When I started this whole journey, I didn't fully comprehend how it would affect us, adding this last baby to our family.  Despite our challenges throughout the whole experience (and boy have there been challenges, to this day), Ansen is the dessert to our family, a sweet, delicate, savory dessert.  I can't get enough of him.  Doug can't get enough of him.  The kids can't get enough of him.  We are in love.

still nursing.....

Its been hard, we have had many obstacles (23 days of NICU and 3 subsequent hospitalizations for me after the fact being the main ones) and I have stayed strong with it, despite many times I felt that quitting would be the much easier option for me.  I have been told that healing might be slowed down by nursing and that I should really consider quitting just for that fact as well.   I have wanted to quit more times then I can count.  It's not easy pumping for a NICU baby for weeks.  It's not easy feeding a baby while suffering an immensely painful wound and every position feels like torture...when pain at wound is so intense, you can do little but grip the handle of the bed/arm of couch and hope some pain will subside SOON (all while nursing a hungry little person that doesn't understand the pain his mama is in.  It's not easy nursing a baby when you can't move easily and are on what feels like too much for too long percocet and ibuprofen daily.  Its not easy nursing a baby when you start wondering IF your wound is hindering healing/IF it could be a possibility that not enough milk is being produced bc of wound.  Its not easy nursing a baby on demand 24/7, with 5 other children 7 and under at home.  None of it has been easy, I have had so many doubts. 

And then I see this pic I took today.  And my doubts are erased.  My worries are eased.  My wound IS healing.  AND my baby is chunking up-LOOK at those kissable, chunky thighs of his!!!  My sweet baby boy is sleeping about 6 hours in a row at night.  Its been so hard, and now I am getting to the rewarding part.  I wanted to quit so many times, but then I reminded myself that this is it since you can't have surprise babies after hysterectomies.  There would be no more babies to nurse.  No more opportunities to get this chance back.  I felt like everything was going wrong, against being able to nurse, but still I kept on going, pumping when I couldn't feed my baby in the NICU, pumping when I couldn't be with my baby, having someone bring my baby to the hospital so I could nurse,  pumping and dumping after 5 extra surgeries and antibiotics they weren't initially sure were safe, etc.  Its been a long, hard road....gosh, this WHOLE pregnancy/deliver has been.  But put another tally mark on our side.  And another battle won!!

mourning at times....

Not all the time, but many times, I mourn a lot of things.  I mourn the loss of a last normal pregnancy.  I mourn being pregnant and actually being excited about it without that feeing of dread I had this whole pregnancy. I mourn the hopefu positive birth experience I had hoped would erase my memories of the twins not so swell birth.  I mourn that I didn't take any pregnant pics of myself this pregnancy, just bc of the negativity surrounding me.  I mourn not buying anything with excitement before baby came (all bc I didn't believe he would actually make it here safely most of the time).  I mourn not holding my baby for over a week after he was born.  I mourn not being normal yet...still....9 weeks after his birth.  I mourn the normal things of going out and living life like a normal person.  I mourn the loss of my uterus at times (although I do not want anymore children), but MUCH more often mourn the loss of my belly button (even though I didn't particularily care for it when I had it). 

But when I feel down and mourning this or that, I remind myself that all of these combined are much easier to cope with then the thought of Doug and the kids mourning my loss.  Every day I am grateful for the gift of life I still am able to enjoy.  And it means more to me then shopping trips and belly buttons.  These days are especially hard at times (to be still recovering at 9 weeks), but each and every one is still a blessing.  You don't realize how good the worst of days are until you have to face the possibility of the end of your days. 

I was sitting there thinking the other day about the hardest moment of my life.  The day of my surgery, when I was wheeled into the operating room, and I was breathing in that oxygen, waiting/dreading being put to sleep and I had no idea if those moments were to be my last conscious moments on Earth.  And I think of that time as a time of beauty, although I mourn not having a *normal* birth, the love I felt for Ansen and my faith in God, giving me the strength to move on through my fear was bigger and more beautiful then anything normal could have been.  Honestly, I tear up thinking of that one solitary moment of my life.   It was terrifying, yet beautiful.  I may mourn all these things above, but I also appreciate how they have made my life more meaningful and more faith based and more faith lead.  And just plain beautiful.

Haven't had much to say....

I kinda go back and forth on my mood and it seems like I have a lot of "feel sorry"moments that I try to avoid posting on here.  I hate to complain bc I have so much to be thankful for.  When I faced this surgery all I asked G od was to keep me alive for Doug and my children and God answered my prayers.  Although I feel like a prisoner to this neverending wound, I am still so lucky bc things could have been much worse for me.  And I can't complain about Ansen and the monitor and 02 for the cars and the meds, bc he shouldn't even be here in the first place after all he has gone through. 

But I would be lying if I didn't say that I missed my old life.  I miss being able to go out with my kids, I miss grocery shopping and parks and Costco, and just about everything else in the world I can't experience while sitting in the house, on this darn couch.  The night visiting nurse is on my case (honestly, I think he is a touch psychotic) that I am to remain 24/7 homebound or he is going to report me to my insurance company and I will lose my visiting nurse care.  Makes me feel like a prisoner.  Like a felon when I leave the house to *gasp* go on a ride.  And its not fair that I have to live like this, after all I have already had to go through this last 2 months.  Can I please START to resume a normal life here now???  I put in my 2 months of hell, I just want to be able to enjoy the "normals" again, only this time with my SIX kids.  When I sneak out of the house to do something normal (like go to my brothers for a cookout (where I am a good girl and do little but sit in a chair and feed the baby), I feel so happy and free and normal.  But those days are far and few between for now, since I have to make sure I am somewhat homebound....I don't want to risk losing my visiting nurses, bc this is still a little bit more then we can care for.  *sigh*  Its all so difficult, this whole thing has been difficult, and maybe I am just a difficult *invalid*.

On the Ansen news, he is now 10.5 lbs, still eating all the time during the day and sleeping a good 6+hour stretch at night.  Seems really early for him to be doing that, but I will take it.  He also gave me his first real smile today.  Made me forget how abnormal I still am right now....well at least for a few moments anyways.  Gosh I love my baby boy, and I love my other five children so much.  I just want to give them back our old life.  And I want it back myself.  Hopefully wound keeps healing as well as it is, its just a big wound and going to take quite some time yet.  God, please grant me the patience to get through the rest of this sanely. 

Update on things

So dressings have gone REALLY well for me (vs the wound vac).  A couple times so far, a smell has started and we were able to get rid of it right away with a dressing soaked in Dakins (bleach and baking powder solution).   The smell is usually indicative of some kind of bacteria, and the Dakins kills it quickly and efficiently, whereas with the wound vac, it would all marinate in there for days, seeminly killing my good tissue in that timeframe (since wound vac sponges are only changed every 2/3 days, whereas dressings are changed twice a day).  My wound looks FABULOUS after 11 days after surgery, which is record for me.  I am very happy with all that, although the wound vac people keep calling my nurse, telling her that I "need" that wound vac back on right now.  Blah, whatever. 

Above my wound, they stitched some skin together that is unfortunately not holding up as well.  The stitches are ripping through my skin bc the skin is held together so tightly (a result from having so much skin and tissue taken out the last 5 debridments).  The bottom stitch (on top half) is just barely there now.  Holding on to the tiniest bit of skin left.  My nurse told me to make it hold on, bc she has ordered me an abdominal binder to wear around my middle.  The binder will take the pressure off those stretched areas and help them heal better.  So I have been trying to get up/move around without using my stomach at all....let me tell you that getting up out of a chair not using your middle is almost impossible.  It takes a lot of effort. 

Ansen is still my snuggle bug.  He has started having a cranky hour or two starting at about 630, and even nursing does little at those moments.  The boy can SCREAM!!  The only things that seem to help him
 is someone walking him around for 2 hours (which my mother in law actually enjoys doing) or going for a car ride.  I prefer doing the car ride, but Doug works most nights at that time.  *sigh*  And my mother in law is only over about once a week at that time, so most nights, I just kinda have to deal with the screaming.   If my mom is over, she freaks out and keeps telling me he needs a bottle.  I know this shall pass, I remember fondly going through it with my other kids.  Ansen had a wonderful day yesterday (besides that cranky 2 hours), we hung out outside and he watched his sisters and brothers play and contently snoozed quite a bit in the bouncer.  He still eats all the time, and prefers to be held 24/7.  I hold him on the couch at night after he eats and we sleep together this way (since he is on a monitor that registers any drop of o2, I am not too worried about this setup).  Part of me can't wait til he will sleep next to me and not on me, but then I really enjoy the snuggles, and looking down at his face, with the peaceful content look he has sleeping. 

Oxygen wise, he NEVER needs it at night anymore.  His o2 sats stay at 95 or above the whole night (and day).  Unfortunately, we still need the o2 for our van rides.   His o2 sats are all over the place when he is riding in the van (always while sleeping)....and they dip in the 80's often and alarm.  I think it must be bc
when he is sleeping, his neck crunches up to the side and it must interfere with his breathing just enough.  So every car ride he has the o2, but other then that he is o2 free.  He has an appt with pulmonologist this Tuesday and we will find out what they are planning to do, they said they would try weaning something (hoping its some of these round the clock meds!!)

The kids still absolutely adore him and its always a fight as to who can hold him next.  Kylie was holding him sleeping on her chest this morning, then Elise changed his diaper and outfit, while he calmly/serenely stared up at her, letting her do whatever she needed to.  Then Gavin helped give him his med bottle and "bur burp" him.  Then Caden was holding him for a few minutes.  This baby boy of mine is well loved!    These sweet moments remind me of how worthy this wound is.  It hasn't been easy, but its 110% been worth it for sure.