If you are reading this blog and have been diagnosed with Accreta or Percreta, my heart goes out to you. My story is not typical- it's close to worst-case scenerio. So-- don't let my story scare you!
We are lucky to live in this modern-age of medical advances, but actually experiencing the miracle is hard. I try to laugh my way through and take one day at a time. I know God holds you and your little ones close.
He is beautiful, happy, and a bit delayed even if one uses his adjusted preemie age.
We have full confidence that he'll catch up soon.
When I chose to not abort my little guy, I was very naive as to how hard my journey to get him here would be.
Today, I know how hard it was and I would make the exact same choice again tomorrow. Life is worth the sacrifice.
I feel better than I have in a year.
I can walk, sit on the ground, perform normal tasks like grocery shopping, laundry, and sex. (Just the essential tasks for us "non-working" mothers.)
I have had a stent in my left ureter for over six months. It has been changed twice. I have had numerous cystoscopies, CT Scans, urine analysis, kidney tests, blood tests, etc..
I pee my pants often.
No, I'm not talking about a gentle leak when I cough. I'm talking about a soothing, warm, "good thing I'm wearing depends" pee. I love it. ;)
I almost always have a kidney infection, bladder infection, or a yeast infection.
My legs are tingly and numb at times.
The hair that fell out after my delivery is just growing back in, so I'm a complete fuzz head (not chemo-like, just regrowth).
My pain is manageable.
Aside from my almost constant antibiotics and vesicare (to relax my bladder), I don't take any medication.
Follow-up issues...
1- I have a stitch in the bottom of my left ureter (the tiny tube that brings urine from your kidney to your bladder). My surgeon is planning to cut that part off my ureter and reattach it to my bladder. This is kind of tricky because my bladder is pretty scarred.
The problem with the stitch is that my ureter gets clogged and my kidney gets infected (and even septic). One side-effect of reattaching a ureter is urine reflux, that causes kidney infections. Nice.
As doctors were working frantically to save my life they made only two small mistakes, they cut my right illiac artery (oops!) and caught my left ureter in a stitch. I absolutely love and appreciate my miracle working doctors. They are my heros. If it weren't for them, I'd be dead. It really bugs me when people are critical of the work that they did. Just so you know. I can't even imagine trying to sew someone closed in the midst of a blood bath. I am nothing but grateful and in awe of brave, brave surgeons.
2- I have a fistula that goes from my bladder to my vaginal opening. A fistula is a tube that forms when two stitched areas sit on top of each other- it's the easiest way for urine to get out, so it just forms a tunnel. In my case, my stitched bladder was near my stitched cervix and a little tube was created. Urine comes out where I used to bleed. Interesting, huh?
Fistulas are hard to fix. You have to actually place a barrier (like a piece of intestinal wall) between the two open wounds to stop a fistula from reforming. Lovely. A side-effect of this surgery is that it might not work and could cause future issues with my intestines. Lovely.
3- I have some yucky stitches and that fistula opening where my cervix used to be. I think they are going to clean that up.
4- I have a pretty large, scary hernia near my belly button at the top of my vertical incision scar. (How I wish I had worn my stomach binder faithfully for at least six months post surgery. Not that it would have changed things- but maybe it could have.)
You have a lot of layers on your stomach- skin, fat, muscle. The top of my scar didn't heal right, so I have skin and then intestines. Yuck! If I hold my baby too long or don't wear my binder, my intestines pop out like a painful bubble. It's awful.
My doctor says there is only 3mm of skin covering my intestines. Gross. My intestines are actually adhered to my skin. So-- they have to do a bowel resection to fix my hernia. Ugh. Yes, I could still end up with a poop bag. I hope not!
I have surgery scheduled for Monday, St. Patty's day. My surgeon better be wearing green!!
I'm sad, scared and nervous. Mostly I'm just distracted. I really can't focus on my normal life because I have this impending cliff getting closer quickly...
Right now, they are planning to do a laparoscopic surgery to repair my innards. (Six two inch slices around my stomach). They don't think they can fix my hernia at the same time which makes me a bit crazy. I really don't want to go through this again!
And- that's all.
I wish I could organize my basement, decorate my house, play with my kids, or file away my overflowing box of "papers to save".
Next week I'll focus on plumbing issues and return to life as a lady of leisure soon enough.
Sigh. I receive many Facebook, blog and email messages from woman dealing with Accreta. I'm hesitant to continue to share my details because frankly, this is rough.
I wish my blog could let you feel, for a moment, how really hard this has been AND how genuinely beautiful it has been.
I am alive because hundreds of people have learned and trained and practiced and served and prayed and laughed and cried and worked to keep me alive. It is humbling and empowering.
The veil between life and death is thin. It is a veil any of us could cross any moment.
One of my heros, Elder Russell M. Nelson was a world renown heart surgeon. He was a pioneer of open heart surgery. One evening, as they were folding laundry together watching television, his own wife had a heart attack and died in his arms. Can you imagine? He was a heart surgeon!! Death is beautifully, tragically, inevitable sometimes.
Both life and death are passageways. They are both gifts necessary for our eternal progression. Trials mold our souls and refine us. I am full of gratitude that my hard had purpose! We all have hard-- I feel lucky to have a beautiful, chubby, delicious baby to motivate me onward.
Life, even with messy insides, is good!
Today is a great day to be alive.
So is Tuesday, by the way.
Thanks for reading!
HOpe things go well this weekend. Your story of faith and healing inspires many.
ReplyDeleteYou and your family are in our thoughts more than you realize, but we will for sure be praying that you have a successful surgery, and a speedy recovery! We love you! Julie & Mark
ReplyDeletePrayers that the surgeons hands will be guided and that your body will heal quickly!
ReplyDeleteI had a preemie and we had some early intervention through the state that helped him immensely. We had physical therapy and occupational therapy (to deal with eating issues). They came to my house once a week for about 6 months. they were wonderful and helped us so much. Do you have anything like that available?
You are constantly in my thoughts. I hope monday goes well for you. I pray that everything will be inspired and run smoothly and that you will heal quickly. You are such an inspiration to me and to so many women. I feel the same way about my doctors. They are my hero's. Love you sweet Jennifer. Ill be praying for you!
ReplyDeleteJenifer: your courage staggers me, but what I like is your commitment to the faith you and your family embrace, and that your belief takes you through enough to put up with the trials you have had. It was hard enough to cope with three kids, and that was when I was nearly 50 years younger - and fit. This added branch of Sandy's family will be thinking of you on St. Patricks Day, and fingers crossed that all goes well.
ReplyDeleteWill be praying for you, Jen.
ReplyDeleteThank you all for your kind words and thoughts. Really, your comments touch my heart. Thank you!
ReplyDeleteJen...Your story just continues to amaze me. What faith you have! May this next surgery go smoothly and you'll heal quickly and correctly! May God continue to bless you and your family!
ReplyDeleteWow! You have been through a lot. I am impressed that you are using your words to heal and help others!
ReplyDeleteMy daughter Joy was born at 23 weeks last year. Due to modern medicine and prayers she is doing great today. I hemorrhaged at 17 weeks for the first of 4 times because of 100% placenta previa, which turned into placenta accreta (which I believe was caused by 3 prior c-sections). After she came home from 121 days in the NICU, I wrote a memoir called "From Hope To Joy" about my life-threatening pregnancy and my daughter's 4 months in the NICU (with my 3 young sons at home), which is now available on both the Amazon and Barnes&Noble websites. It was quite a roller coaster that I am certain some of you have been on or are currently riding on. My mission is to provide hope to women struggling with high-risk pregnancies, encourage expectant mothers to educate themselves before electing cesarean deliveries, provide families of premature babies a realistic look at what lies ahead in their NICU journey, and show that miracles can happen, and hope can turn into joy. Please see my website http://www.micropreemie.net and www.facebook.com/jenniferdegl and watch our amazing video of my daughter’s miracle birth and life at: http://www.youtube.com/watch?v=V_hleySg-iU
Congrats on your baby and your beautiful family and your life!
You are such an amazing woman. I will be praying for you.
ReplyDeleteI love you Jen Moss. You are a great example on so many levels. I appreciate and respect you oh so much.
ReplyDeleteI am glad you have a head mount now to remind you of your red neck days in Philomath. I do love you. xoxoxo
Praying, sweet friend! ❤️
ReplyDeleteJen, I will be thinking happy thoughts for you and sending prayers as you prepare for another surgery. Prayers for your family as well, they are as strong as you!
ReplyDeleteI know very well what you went through to get little Ben here, and have first hand seen your faith and strength. If anyone can do this you can! You have come so far!
You are a LEGEND around OHSU MBU!
Prayers and thoughts for a speedy recovery! That is one cute baby!
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