17 Days post-surgery

It has been 17 days since I've had my reconstructive bowel surgery.  My incisions are healing nicely and they're not nearly as painful as they were.  I have a lumpy stomach.  I'm going to have to get used to this, because apparently when your abdominal muscles are cut through, they never really go back to being normal.  Now I never had washboard abs, but at least they were all one level.  As the swelling starts to subside, the dips in my stomach are more noticeable and are causing my ostomy bag some major issues.  It can't sit flush against my skin so the bag keeps leaking over the past 24 hour period.  Now this is the first time that I'm publicly talking about this, but maybe it will help me cope with the emotional trauma I'm going through having this temporary nightmare.

My best friend Katy showed up to bring me out to lunch since I am stir-crazy and am feeling a little sad about my whole situation.  We went to the Apollo Diner, which is only 1/2 a mile from our house.  Twenty minutes into being there, by bag started leaking and we had to leave.  No one saw what happened because we were at a booth and I covered up with a mound of napkins, but that could have potentially been extremely embarrassing if anyone saw or if we weren't so close to our house.  I spent the day going through bag after bag, ripping my already sensitive skin to shreds.  My lumpy stomach is to blame.  The bag can't seal to my skin correctly because my belly button area looks like a mountain range.  Now I get to play the game of trying different products, and waiting and seeing if I happen to leak all over the place.  This is not helping my already fragile emotional state on this matter.

I am so embarrassed to have this device attached to me for the whole summer.  I'm having an extremely hard time with it and I cry every day, sometimes multiple times a day because of it.  Now I've taken a step back with this not knowing if I'm going to spring a leak at any moment.  How am I going to survive 3 months with it if I haven't even made it 3 weeks yet?  I know it's only permanent for now, so I should count my lucky stars, and I need to remember that this device basically saved my life.  I should be happy that sometime soon I could be a normal healthy person.  My insides went through a war and need time to heal.  This is what's going to help them heal, but it's at my self-esteem's expense.

I am tired, weak, and I get out of breath just walking to the bathroom.  Not only am I having a hard time with the ostomy bag, but I'm having a hard time with a lot of other things as well.  I've mentioned them before, but my guilt and sadness aren't going away.  I can't be in my house by myself without someone else here.  Someone needs to be here to help with Emma, well actually care for Emma since I can't hold her for a long period of time or carry her very far.  I feel like I'm failing as a mother because I can't do the one thing I'm supposed to be able to do: to care for my child.  I then start thinking about how I'm a huge burden on everyone around me because they have to care for my child and help me do things (like get the drink from across the room or plug in my computer because I can't get up as much as I need to).  I hate that I have to rely on others just to make it through the day.  I was hoping to be much more independent with myself and Emma at this point.

I feel like I'm leaving Dan as a single parent, even though I'm sitting next to him.  He has to feed her, change her, cuddle her, and soothe her as I sit and watch helplessly not being able to offer a hand.  I can hold her if she's starting to fall asleep, but when she's awake she's too active and she hurts my stomach.

I'm also having a hard time knowing that Emma is the only baby that I will have.  Apparently my body hates when I'm pregnant, so I can't have any more children.  No one can guarantee that everything will be fine, so I can't risk having this happen again.  Our family has been so great, but I can't put them through this again and I can't put myself through this again.  We can always adopt, but I don't like that Dan and I didn't really get to make that choice for ourselves.  This is devastating, but I can't be a mom if I'm not alive, or if I'm extremely sick.

I'm not really sleeping, in part because I'm constantly thinking about all of these things (and Dan is snoring up a storm), so exhaustion is causing me to be even more emotional.  I can't get out and exercise-I can barely walk around the condo complex here without wanting to sleep for 10 hours after.  So, I'm going to write every once-in-a-while on my blog.  I don't know if anyone will read it, but somehow putting my thoughts into typed words, instead of crying and telling Dan the same thing every night, will hopefully make me feel a little better.

This week we have been showered with food from all sorts of people, including colleagues from my school.  We are so grateful for this and appreciate each and every one of you who have helped us out in some way.  I don't even know how to show my gratitude except to say a big THANK YOU!!!!!!!

Big Steps

Well, big steps may be pushing it a little bit, but I'm taking bigger steps than I was 4 days ago.  I'm not a complete geriatric now-I think I've stepped up my speed just a little bit.  I can walk almost standing straight up but it feels good to put my hands on my hips to remind myself to straighten out.  I can go up and down the stairs more than once a day (for the past 2 days), and I can get out of bed a lot easier with less pain.  The most important thing is that I can hold Emma and feed her a bottle!  I still need to hold her sitting down, but I'm working on standing up and attempting the stairs with her tomorrow so I can be even more independent with her.

This week I'm not going to have someone with me the entire time that Dan is at work.  I'm going to be by myself for a few hours in the morning before having help.  I'm hoping I'm not pushing myself too much, but we'll just hang out in bed and have breakfast and watch movies (or maybe take a nap).  I miss having my freedom.  I'm not someone who can sit around and do nothing.  I need to be on the move when I want, and the past 2 weeks haven't allowed for that.  This may be the start to my independence.

I'm going a little stir-crazy since I can't drive because of the surgery and the narcotics.  I'm desperate to leave the house to do something, anything.  I'm not even drinking coffee and I made Dan drive me to Hannaford in Milton, only 3 miles from our house, to get coffee creamer.  I really needed to get a creemee tonight so I got to leave the house for over an hour.  I was sitting in the car the whole time, but it wasn't in our house on one of our couches.  I sat outside for two hours today in the sun feeding Emma and watching people drive by our house.  If anyone wants to come visit and distract me during the day, even for 15 minutes, it would be greatly appreciated.  No appointments are needed.

We're going to try and have our family photos done this week or next week so we can finally send out birth announcements, thank-you cards, and photos to all of our friends and family who have so generously given to Emma and our family.  My attempts have proven that I'm not as good of a photographer as I thought I was.  I have friends who have had newborn pictures taken that have come out amazing, so we want to have Emma's pictures taken while she's still tiny.  She is growing since she's turned into a little piggy with her eating.  She has gained so much weight and she changes every day, but the funny thing is that she still only weighs 8 lbs., which is what some newborn babies weigh. Her arms and legs are getting a little meat on them, and she officially has a double chin now.  She looks like a real baby and not a little doll.

Dan starts softball tomorrow, which is exciting for him since he loves to play. It will be good for him to get out of the house and focus on something other than the past two weeks. I'm a little sad that I'm not playing since I played last year and had so much fun.  There are a variety of reasons that I won't be playing this year, but I'll be on the sidelines cheering and maybe even keeping score once-in-a-while.

I'm going to give another shout-out to all of my family who have been so supportive over the past two weeks with everything.  I especially want to let everyone know just how amazing my husband is.  He has somehow managed to take care of Emma, the house, and me while being sleep-deprived and going to work.  Dan is the best and I am so lucky to have him!

There's No Place Like Home....

After 11 days in the hospital, I closed my eyes, clicked my ruby slippers, and whispered, "There's no place like home."  This time on day 11 it actually worked.  I was able to come home to celebrate Emma's 7-week birthday in the comfort of my own living room.  I was expecting to walk in the door and miraculously be cured of all my pain and to be able to care for my baby.  The past 24 hours have proven me wrong.

I lost a lot of weight, muscle-tone, and strength over the past 2 weeks.  I'm walking at a snail's pace, but I'm able to get around independently.  I never thought about how hard the 3 stairs would be to get into my house; three little stairs that I hadn’t given a second thought until stepping on them yesterday.  They were difficult to manage, so I hung out in the living room until 9:00 at night when I could brave the 14 stairs to my comfy bed.

It hurts to hold my baby.  It hurts to do anything.  I want to take care of Emma on my own, but sadly I almost can't even take care of myself right now.  I have a hard time getting out of bed.  I get a little dizzy in the shower.  I can't pick things up off the floor.  I know I just had major surgery but it's no fun feeling helpless and having to rely on someone for everything.  I have come to the realization that I'm not going to be able to do this alone and that I definitely need help during the day while Dan's at work this week and probably next week as well.

I wanted to take this entry to thank my amazing family who have stepped up to the plate and cared for Emma while I was hospitalized, and who visited and sat with me in my awful room all those times.  I've never been one to seek help for anything, but right now I have no choice. Each and every family member has been incredible and for that, I am eternally grateful.  If Dan and I didn't have the support of our family, we probably would have to have hired a really expensive nanny or Dan would have to take unpaid leave from work.  I'm not getting paid right now since I'm on maternity leave, so that would have been a huge financial burden as well as an emotional one of leaving Emma with a stranger when she was so young.  This whole situation has really made me stop and think about how nothing really matters excepts your family and close friends.

If anyone is feeling like they're intruding on our privacy or family time, please don't.  We need the help and I need the company!  There's a cute baby to cuddle and you can watch me make a fool of myself on my wonderful Dilaudid narcotics! In all seriousness though, our family has truly been amazing.  Positive thoughts across the state and from other states, Emma-sitting, making food for Dan to eat and now for me to eat so we don’t have to worry about cooking, sleeping in my bed to help at night-they are truly amazing!

For those that care, this is a picture of my 6-inch incision directly through my belly button.  My stomach is still swollen and has the staples in it in this picture, but it’s the only one that I got before having the staples removed.  The anal-retentive side of me is really annoyed that my amazingly talented surgeon could not cut a perfectly straight line down the middle of me.  Now my scar is going to be crooked!

Thoughts on My Health...

So now to update everyone else about my health all at once. 

As you know, I have Crohn’s Disease; I have been diagnosed for 11 years, probably living with it for at least 15 or 16 years.  Over the diagnosed years I have had many ups and downs with the struggle to find “the right” medication to control my symptoms.  Crohn’s is not a glorious disease by any means-lots of frantic, incontrollable runs to the bathroom at my worst, 20 times a day.  I used to not use the bathroom in public if at all possible (I would get in the car from Burlington to drive Essex and use a familiar/comfortable bathroom rather than risk having a friend or stranger hear me in the bathroom).  With too many close calls and desperate situations, I have become fond of any bathroom that I can get to.

After Dan and I got married and we started talking about having kids, immediately Crohn’s and my medication came up as a topic.  Was it safe for me to take during pregnancy?  Was it safe for me to go off the medication during pregnancy?  Was I able to get pregnant at all….?  I went to see my Gastroenterologist who said that without a doubt, in my case if I stopped my medication I would end up in the hospital.  He would not recommend that I stop treatment for my overall health.  I pushed the envelope a little and skipped the first 3 doses to hopefully avoid any birth defects.

I started up the medication again and felt great.  Dr. Vecchio had always said that 1/3 women get better, 1/3 women stay the same, and 1/3 women get worse during pregnancy.  There was no way to tell what category you would be in until you knew first hand. I thought I was in the first third of women because I felt great (minus the morning sickness).  Little did I know that I would start to lose my appetite, get sick from everything I ate, and start to lose weight at each prenatal appointment during the pregnancy.  It became a little joke about losing a pound each week-I could have entered the Milton Melt-Off after all!

Around the holidays I started to get a painful cramp in my right abdomen with what seemed like protrusion bulging through my side.  The OB said it wasn’t the baby, and the GI said it wasn’t Crohn’s.  They ordered and abdominal ultrasound to make sure everything was ok, but the message I got was that sometimes you have pain and it can’t be found.  Kind of a bullshit answer, but no one really seemed concerned so I lived with the pain. 

I had several fevers throughout my pregnancy that no one could really pinpoint anything to, including three nights before Emma was born. Here my fever caused her heart rate to skyrocket and for me to dilate, seeming to have a baby 4 weeks early.  Luckily after we were admitted, they sent us home after 9 hours with no fever and no baby.  Two days later, at 5 am on March 28, 2011, my water broke.  It was no joke that my water broke-it was like a scene from a movie.  My water didn’t break because Emma was ready, what we’re realizing is that my water broke because I had an infection in my intestines and abdomen. 

For two weeks I was able to start eating some food, although Emma’s pediatrician put me on a strict high calorie diet, him being the second doctor to prescribe my daily Ben & Jerry’s milkshakes…..ah, if only the lactose didn’t make me sick.  I then started noticing that the painful cramping and bulging got a lot worse and a lot more intense.  Dan insisted that I go to the ER.  Here I drank the awful contrast and had a CT-Scan where they found a new area of inflammation to my intestines that hadn’t been there.  This was causing my cramping and fevers, as well as lack of appetite and weight gain.  I went on 2 antibiotics and a steroid that seemed to help tremendously for a week.  No cramps, and no pain.

A week later, as I was feeding Emma and writing Laura an email at 4:30 AM, I started to get really bad cramps in my actual stomach as well as a pain that didn’t go away.  I asked Dan to help me feed her as he watched me get progressively worse over the next hour before he went to work. I wasn’t about to let him miss a day of work after having only been back for 4 days past paternity leave.  He insisted and called my doctor after I was writhing in pain for 3 hours on the bed.  Could I possibly be in labor again?  This is what I thought since the pain was identical to labor.  Dan again insisted on going to the ER after talking with my doctor.  He’s so good at forcing me to do things when he knows I’m stubborn.

At the ER they did another CT-Scan and found that in a week in half, that there was even more inflammation and partial blockage that had developed (think of it like asthma where the intestines closed up from irritation or infection).  This was causing the new pain and caused me to be admitted to the hospital.  They were also thinking that I had C-Diff, which is a healthy bacteria found in everyone.  Once you take an antibiotic, you body breaks down the good and bad bacteria causing a spike in white blood cells and excessive diarrhea.  It is extremely contagious and was what caused them to put me in isolation and not allow Emma until I was ruled out.  This didn’t happen until Mother’s Day, but it was a fantastic gift.

After hitting a high on Mother’s Day, I felt like the meds were going to work and I was going to be out of there in a few days, or a the latest Friday.  Little did I know that my body had other plans for me.  Monday morning the surgeons were all saying how great it was that I was having bowel movements because that meant the medication was working.  The GI doctors were saying otherwise; you can have diarrhea and a complete blockage where nothing gets through your small intestines, yet your Colon produces watery stool.  The GI doctors were leaning more towards wait and see by Friday.  There was no wait and se since Monday night was awful for me.

I went to sleep at 10:45 and woke up in even more pain than I had ever been in, all while on a two-hour pump of dilaudid.  I had to use the pump every two hours throughout the night where I was only asking for it between 6-10 hours during the day.  My surgical visits always started at 6 AM, so Tuesday morning the surgeons were convinced that I was going to have surgery, but they were short-staffed so it was probably going to be on Wednesday.  Over the course of the day when I didn’t show any signs of improvement, Dr. Cataldo decided that he was going to stay late until my surgery was done and I was safe.  My 3:00 surgery got bumped all the way back to 7:00, which means I hadn’t eaten or drank anything for over 12 hours.  It was finally time, and Dr. Cataldo came and personally got me from my room and walked me to the OR since he felt bad about the delay.

Once they opened me up they found a huge mess: all the aforementioned things as well as an abscess and a perforated bowel, which caused a spread of septic waste in my abdomen.  This is the kind of stuff that people die from, and they had no idea it was inside me to begin with.  They think the perforation had been there for a long time since my body had nicely formed scar tissue around the leakage.  They said my insides were a mess and they had to cut out two feet of small intestines and 15 inches of large intestines.  Because of the mess I do have an ileostomy bag for a couple of months. I am in no shape to talk about this yet and am completely mortified, but at least I’m alive and I can start healing to get home to my baby girl.

So now the healing begins.  I was in the ICU for 3 days, now I’m in a regular room.  The incision hurts so much and it’s very hard for me to move.  I had a tube in my nose until a few hours ago, so now I can drink clear liquids.  I feel a lot better after having had a blood infusion today; apparently I lost a lot of blood in surgery.  I will probably be in the hospital until at least Monday, so keep your fingers crossed that Monday afternoon I get to go home.  I’m pushing myself to be out of bed and walk to the bathroom and sit in a chair, but it’s really painful.  I’m up for visitors as well, Baird room 684, but for short periods of time.  I’m going to try and catch up on my sleep while I’m here!  Thank you again to everyone who is helping with Emma and keeping me sane!

5 Weeks Old

It's hard to believe, but Emma is already 5 weeks old.  She's growing like crazy now, weighing in at 6 lbs. 8 oz. at her 1 month appointment last week.  For two weeks she plateaued at 4 lbs. 11 oz., but with formula supplementation she's put on 2 lbs. and grown almost 2 inches long.  Even with the growth it only puts her in the 2nd % for weight and the 3rd % for height for her age.  She's making progress though, which is what we like to see.  We're also starting to see a double chin!


The time has flown by and Dan is back to work already.  This is my first solo week, which has gone pretty well.  I'm finding that when I'm with her she does NOT sleep at all...maybe she loves me so much that she wants to stay awake with  me every second of the day, or maybe she just smells me and wants to eat all the time.  Whatever the case, I've been very grateful for Liza coming over to hold her, since Emma passes out as soon as Liza picks her up.  Somehow I'm managing with the exhaustion, but I would like to have the option to sleep if I could manage a day-time nap.


I know we haven't been forthcoming with pictures of our rapidly growing girl, but I'm finding it very hard to just maintain and then take pictures on top of it.  The pictures that we have taken are not very good or not too exciting. I will share a few though that make us laugh or smile.  We're hoping to have a professional photographer come to our house to do family portraits so we can finally send out her birth announcements and thank you cards.  Liza will also be helping us with this so pictures will come sometime soon (hopefully).

Completely loving her first bath!

Post-bath crazy hair.

Meeting Great-Grandma for the first time.

Our attempt at a nice photo for Rachel.

Fail.

 Emma and Daddy napping after work.

 Old-fashion sleep outfit-doesn't she look like a "Who?"

 Wide-awake at midnight.

 Always with the hands moving.

 Starting to get sleepy...

 Precious little face!