My chemo explained

Chemo week is in full swing.  I meant to blog yesterday but after sitting for my infusion all day Todd assured me that all of you would forgive me for missing a day.

I don’t remember if I ever explained to all of you my current chemo regime.  I am doing the FOLFIRI plus Avastin colon cancer regime.  My first round of chemo back in 2011 I did FOLFOX.  Basically both FOLFOX and FOLFIRI lead to similar results.  The reason I am doing FOLFIRI this time is because I’ve already done FOLFOX and my cancer has returned, so hopefully my cancer cells will respond better to the FOLFIRI regime.  If you’re interested to learn a little more about the differences in the two this link is a short description about the two therapies - http://news.cancerconnect.com/chemotherapy-regimens-folfox-and-folfiri-produce-similar-survival-in-advanced-colorectal-cancer/

In addition to FOLFIRI I also receive an antibody call Avastin.  With my type of tumor I have the option to take 2 different types of antibodies.  I can either take Avastin or Eurbitux.  When my oncologist went over my options he mentioned that Eurbitux almost always causes facial rashes.  Since I had the option to do either, my vanity won out and I chose the Avastin.  It’s pretty cool how these antibodies work along with the chemo drugs.  If you’d like to learn more about how the Avastin works check out this link - http://www.avastin.com/patient/crc/about/index.html

So, every other Monday I go in and have my blood taken and urine sample, quick doctor visit, and then start my day of chemo.  I usually get to Georgia Cancer around 8:45 and don’t leave until 4:00 or a little earlier.  It’s not a bad day because everyone is very nice.  They have a “fancy” coffee maker which I use to drink hot chocolate – yum!  They hook me up with a warm blanket and pillow and I relax in my recliner.  Though the person sitting beside me doesn’t know it, they are about to become my talking buddy for a while. 

We start out with my premeds which are just some saline and 3 different antinausea meds.  We then start my chemo drugs.  In the beginning I believed I would be able to work, type, or read during my treatment.  I quickly learned that no matter how hard I fight it I get very tired.  I hang in there through lunch time and then I pull out my eye mask and take a nice snooze.  Sleeping around others is a little weird, but most of them are doing the exact same thing.  I’ve never been much of a napper and I’ve always been grouchy when I wake up so when I wake up at the cancer center I try to be really quiet and not talk to anyone for at least 10 – 15 minutes.

When my chemo drugs are done I usually am starting to feel nauseous again.  I sometimes ask for a little Ativan to make through the ride home – good ol’ vitamin A!  After that it is time for my push of 5-FU.  The 5­-FU is what I take home with my pump.  They give me a push first to get me started and then disconnect my leads from the hanging chemo drugs and hook it up to a pump of the 5-FU that slowly pumps the final chemo drug through my port for 2 more days.  I have to receive the 5-FU slower because it can cause mouth sores if given too quickly.  The 5-FU is the stuff that I really HATE!

So, that is where I am now.  I had my infusion yesterday and right now I’m just tired and feeling nauseous and not hungry.  The 5-FU is pumping through my body and I am slowly starting to feel the side effects from that.  Just like the last time I keep my pump in a little messenatger bag that goes everywhere with me.  It makes this little “swoosh” noise each   time it pumps the drugs through my lead.  In the beginning the “swoosh” is kind of like a nice white noise but by the end of day 1 and definitely day 2 that “swoosh” is not nice white noise to me.  It is more like a “slurp!” draining all the life out of me.  The 5-FU really affects my throat.  (Thus the not wanting to eat and nausea)

Have you heard the saying “no pain, no gain”?  That is my life.  I’m not in physical pain but it’s not comfortable and I’m completely drained – so maybe for me it should be “no drain, go gain”.  Not gonna lie, I am dreading tonight and tomorrow but I know that I’m doing this for a reason and hopefully this regime is working for me.

I mentioned earlier in the blog that because of my tumor type I was able to choose between 2 different antibodies.  After my scan in January if surgery is not an option for me the other antibody type would be an option – It wouldn’t be a glamorous one, but if it works, it works.

Don’t worry about me.   I may not feel 100% but my personality is still 100%.  I may not be hungry or want to talk too much but I’m happy.  I’m still the same Shea.  That is one thing that cancer will never change!

Ned and Fred are jerks!

Ned and Fred are jerks!

When I first met with my oncologist to talk about my chemo treatment we discussed side effects.  One of the side effects of chemo is hair loss.  With colon cancer you generally don’t lose all your hair.  I was told that my hair would just thin like it did the time before. 

The first time I had chemo my hair thinned but no one other than Todd, Carie (my hairstylist), and I could tell.  I have big hair so it works well in my favor. 

Hair falling out is probably one of the hardest things that I’ve gone through mentally.  I think the reason why it gets to me so much is because I already feel bad on the inside and hair loss is something on the outside that shows what the chemo drugs are doing to your body inside.  There are a lot of ways that I can hide how I feel on the inside by dressing up, putting on makeup, and doing my hair.  At a glance no one would know that anything was going on with me.  But, hair loss is visible. 

Next time your washing your hair imagine this.  You shampoo your hair and as you go to rinse you pull your hand back and there is a large clump of hair in your hand.  It isn’t just a normal small amount of hair that usually sheds but it is like you touch your hair and it just comes loose from its end.  It doesn’t end there.  It isn’t just one handful because your hair is still full of shampoo suds.  It happens each time you run your hands through your hair to rinse the suds out.  Wait!  We’re not finished.  As you towel dry your hair you notice another clump that you could build a small Barbie wig with.  Then you brush your hair.  Aaah!  Why? Why must you brush your hair?  Those spots that you though were tangles to be brushed out aren’t tangles at all.  They are clumps of hair that are just waiting to be freed from the remaining strands that are still holding on.  All you can do is stare at the pile of hair that is accumulating in your bathroom trashcan and wonder how many more strands you have left and how well attached they are to your scalp.  Oh!  And on top of that, it’s not your gray hairs that fall out.  No!  Those stubborn little boogers have an unyielding will to live because they never fall out.  When it happened to me this time all I could do was stare at the hair in my hand, towel, brush, and trash can, sigh, and then let it go.  What can you do? 

The time before I only had 1 bad bald spot on the left side of my head.  I named it Fred.  Why not?!  Fred was not my favorite but I could tolerate him.  This time Fred returned but he brought his friend Ned.  Now Fred is a jerk, but (pardon me) Ned is an asshole!  Ned sits right atop my head and he apparently loves the holidays because he has grown fat with time.  And, like any unwanted guest, he invited friends.  I now have Stanley who is a moderate sized jerk who hangs out on the right side of my head and mirrors Fred and Lucas who is this nice thin spot right along my hair line at the back of my head.  Jerks!

My hair has thinned a lot more this time than it did the time before.  My oncologist thinks that it may have something to do with my pregnancy.  If you were to look at me you would be able to tell that I’ve lost a lot of hair.  I wear a lot of hats and can only wear my hair in a ponytail with a headband to pull the hair that is left over my bald spots.  It’s not a perfect system but I make it work.

I realize there are lots of men and women who lose all their hair.  I should be thankful for the hair I have.  But, in a way I almost feel like my situation is worse because I haven’t lost enough to shave my head and wear a wig but I lost enough for it to be obvious.  See!  Ned and Fred are jerks!

At the end of the day hair doesn’t really matter as long as I’m getting healthy.  I’d gladly live the rest of my life with Ned, Fred, Stanley, and Lucas to come out cancer free and healthy in the end.  Hair, like money, is just a thing.  It’s nice to have but you don’t need it to be happy.

Happy due date Ellis!

Happy due date to Ellis!  It’s so weird to think that his due date was 12/12/12 but he was born on 9/21/12!  I was a little bummed that I wouldn’t be having him today because I just thought the date was cool.  I can’t even imagine having him now.  He would have been HUGE!

I’ve never been a baby person.  I honestly wondered if I would even have kids for a while.  After becoming pregnant and having Ellis I now have a great respect for mothers.  First off, pregnant women have to deal with morning sickness, random weird pregnancy stuff, and weight gain (and to think they intentionally do this to themselves!)  Then after delivery they go insane for a few weeks/months as the hormones level out (Believe me, I KNEW I was crazy and there was nothing I could do to stop it).  On top of that, they (hopefully along with the dads) are subjected to lack of sleep, possible insanity due to crying, and being thrown up on.  I had no clue.

Let me take some time to share a little bit about my little man.  Most of you know that Ellis was a planned preemie.  It’s funny because the NICU is generally not a part of someone’s birth plan, but for Todd and me it was.  After finding out that my cancer had returned for the 3^rd time I consulted with my doctors and we decided that it would be best if I went ahead and had Ellis early.  I went in and had my steroid shots to boost Ellis’s lung development and the following week at only 28 weeks I had Ellis.

Ellis’s birth was not what I would consider a “normal” delivery.  I actually had him in an OR in the hospital part of Northside instead of a delivery room in the Women’s Center.  My OB had to get special permission for Todd to be in the room.  It was interesting because the delivery had people from labor and delivery, surgical staff, and people from the NICU to take care of Ellis.  I honestly have never seen so many people in an OR before. My guesstimate would be 30 people.  The c-section went well and nothing needed to be done regarding my tumors.  Ellis apparently “squeeked” when he was born, but I couldn’t hear anything because Todd was doing his “almost pass out” performance.  Now, this is just me, but do you also find it odd that I had to have 2 IV’s, have plenty of blood drawn, and have an epidural put in and Todd was the one who almost passed out?!  Come on!  Man up, babe!

Ellis stayed in the NICU for exactly 2 months.  Northside NICU was awesome and all the nurses, doctors, and hospital staff were impeccable.  There were a lot of ups and downs but we met a lot of great people along the way.  The day Ellis was released I took him and ran!  I actually neglected to take pictures because I was so excited to liberate him from the hospital.  I was so glad to have my little man coming home and my daily drive to Northside ending.

Now that Ellis is home I’ve learned a lot about him and men in general.

1. Men, or at least Bamberg men are ingrained to put their hands down their pants.  I have actually diapered Ellis’s hand!  It’s not going anywhere, why constantly check that it hasn’t moved?!

2. There is something about changing a diaper that really ticks Ellis off.  I don’t know how he does it since he doesn’t have a butt but he squeezes those cheeks together so tight there are probably things hiding down there that have never seen the light of day!

3. Men are addicted to food from birth.  He actually gets mad at himself that he isn’t eating fast enough during his feeding.

4. Men love to have their head rubbed from birth.  Ellis hates baths.  I swear he would rather stay smelly than take a bath.  He kicks and screams.  But, as soon as the warm water and soap hit his head he instantly relaxes.  My mother-in-law actually asked if he was ok because he went from screaming to totally relaxed in 2 seconds.

There are so many things that I have learned to appreciate after becoming pregnant.  I love having a baby but I swear there are many times when Ellis is crying that I think, “I should be the one crying not you!”  Babies are cute and cuddly but they are a lot of work.  I would like to just say to all the moms out there – I had no clue.  All of you are awesome and should have gold medals!

Happy due date Ellis!  You’ve changed my life, but I wouldn’t change that for the world!

No more hiding

Hello all!  I know it’s been a long time since I’ve checked in or written anything.  Let’s call it tiredness and denial.  Going back and forth to the NICU and going through chemo wears a girl out and then when a little munchkin comes home that really wears a girl out.  There is also the fact that I just haven’t always wanted to talk about what’s going on – that’s the denial part.  I know I have cancer.  I know I’m going through chemo.  But, actually talking about it makes it some much more real.  And, maybe, just maybe, I’m scared and don’t want to admit it…..weirder things have happened.

Ok, so here’s the deal.  I talk to God in the shower a lot.  Lately my chats have been kind of quiet but today something really struck me.  I have cancer again.  It is what is it is.  I’m going through chemo but no matter how hard I’d like to believe it’s not real, it is.  I can either hide in my tiredness and denial or I can share my story.

There are so many nights that I lie in bed and wish that I was normal.  (I know, so not me, right?)  But, I’m tired of being the one who has odd things happen and I’m tired of being the one who has to be strong.  I feel like I’ve already been there and I’ve paid my dues.  Now is my time to have something simple.  All I wanted out of life was to continue cancer free, have a baby, work, and have some laughs.  Why can’t life be that simple? 

You know, I’ve never been one to accept change quickly.  I’ve improved my adaptability over the years but it’s still not easy all the time.  So, while I was having my talk with God in the shower I came to the realization that this is what He wants me to go through.  And, one thing I’ve learned is that God has a plan for our lives and though we may not like it we can either choose to get on board or hide from it. 

Now I know all of this is my ranting and my beliefs but this is my blog, so I can say whatever I want and you just have to deal with it!  But, I’ve basically said all of that to say this – I’ve been hiding from my life course, trying to deny it or wish it away.  I have cancer again for a reason.  I don’t know what that is, but the least I can do is share my experiences with others.

If I’m going to make this commitment to start sharing more I am going to need you to make a commitment too.  Here are my ground rules:

-          Do not feel sorry for me.  I’ve never wanted anyone’s pity.

-          Realize that sometimes I’m going to be mad or sad and that is ok.  Sometimes people don’t need cheering up, sometimes people need someone to get down in that low spot with them and say “yeah…that really sucks”.

Think you can handle it? 

Alright, let’s get started.  I’m just going to jump right in to the nitty gritty.

First, let’s go over what all is going on.  Here are the highlights:

-          I was diagnosed with colon cancer in December 2010.  Had a colon resection, chemo, batta bing batta boom I was cured. 

-          After my CT scan in December 2011 I was cleared to try to have a baby and after some genetic testing to make sure my cancer was not inherited I was cleared by my OB as well.

-          I got pregnant in March 2012 – Yay!

-          In my first trimester my perinatal specialist found a tumor on my ovary while doing a routine ultrasound.

-          I had surgery in June 2012 to remove the tumor, had 3 MRI’s to make sure I didn’t have cancer anywhere else, and was pronounced good.  Yay!

-          At the end of my second trimester I had a little bleeding, I went to my OB and we discovered I then had a tumor in my cervix. 

-          I had another MRI that showed it was not only in my cervix, but a small part was in my liver as well.  The places were inoperable at the time.

-          I had steroid shots to help boost Ellis’s lung development and had a c-section on September 21, 2012 at 28 weeks.

-          I had a PET scan in October and started chemo.

-          Ellis grew and developed and was released from the NICU on November 21, 2012.

That is my story in a nutshell.  What I’m facing now is 2 more rounds of chemo (I’ve already done 4) and then I will have another PET scan to see if my tumors have shrunk to an operable size and area. 

Let’s talk about this….  Everything that I’m doing hinges on this scan I’ll have in January.  On one side I could be having some huge surgery – a hysterectomy and a part of my liver removed.  On the other side I could be reevaluating my chemo regime and starting more treatments knowing that my tumors are still alive and kickin’.

There are days when I am convinced that my body is conspiring against me and it’s some crazy battle that I just can’t win.  There are other days were I am full of optimism that I’m fine and the cancer will be gone or they will get it out of me and I will be healed and have a normal life.

I’m not going to lie.  I’m scared.  This time is so different because it was supposed to be gone and it came back and because of Ellis – it’s a game changer.  I know that recurrent cancer is much more serious and I stand a higher chance that things might not work simply because I’ve already done this once and it still came back.  What if it doesn’t go away this time?  What if this is a fight I’m not supposed to win?  What if I don’t get to see Ellis graduate from high school?  I know these aren’t good things to dwell on but they are things that run through my mind on occasion.  Wouldn’t they you?

That is where I am.  It’s all out there.  I’m scared, tired, and occasionally in denial but I’m determined to see this through.  I can’t always be down because that is no way to live.  No matter what comes my way I have to just keep on pushing.  That’s what I fully intend to do.  I’m going to be me – happy, sad, or mad, I’ve got to keep going because giving up is not an option.

Better late than never...

I know. It's been 10 days since I've posted anything. Can we just say its been a long 10 days for me?

I started chemo last Tuesday and that wound up being much harder than I anticipated. For some reason I just assumed that I would feel the same way I felt the time before. Wrong. Don't get me wrong, it wasn't a terrible week, it just didn't go as I planned. I thought I would feel better and have more energy this early in the game. I am feeling MUCH better now.

Ellis is doing great! He is now on a regular low flow cannula and has started trying to bottle feed. He's still young (gestational age) to be taking a bottle so he's mostly just practicing with 1 to 2 bottles a day. He's doing well. He now weighs 4 lbs 4 oz and is starting to chunk up. I'm so ready to have a rolly baby!

Slow and Steady

Slow and steady wins the race, right? Ellis has been growing along well. He is now 3lbs 9oz. He is still working on perfecting his breathing while eating. He has his good days and his just par for the course day. I'm glad that he hasn't had a bad day.

I made a decision yesterday. The NICU should not be in the women's center. I am going to start a petition that the two areas should be completely separate. It's frustrating going into the hospital to see my baby that I can't bring home when I am passing women who are leaving with their beautiful full term babies. I don't dislike them. I want to BE them! I want that and some days it just plain sucks seeing that on my way to see Ellis. It's hard to focus on his progress because of that sometimes.

Todd and I went to a premie support group at the hospital last night. I really enjoyed it. It made me feel like not such an oddball. Everyone there had their babies super early and are going through or have been through the same thing as us.

I met with Ellis's occupational therapist yesterday and we are working on pacifiers or thumbs. Ellis sometimes takes a paci and other times he just lets his thumb sit in his mouth! So funny!

We are both doing well. Just taking it one day at a time.

Quick Update

This is just a quick update because things are so busy lately.

Ellis is doing well. He is still struggling with his breathing because of acid reflux during feeding. They have bumped him up to a 4 on his high flow cannula and put his feeding tube a little further in his stomach. So far he is responding well to the changes.

The nurses and doctor's assure me that this is normal for his gestational age and isn't anything to be concerned about. I'm just want him to be comfortable.

Ellis now weighs 3lbs 6oz. He "for real" smiled at me for the first time yesterday. (Sorry no pictures because I was too busy smiling back!). I was making a "mpp!" "mpp!" noise and as he looked in my direction he cracked this huge sidways smile. It happened a few times but each time Todd would try to record it Ellis would not cooperate. You'll just have to take my word for it.

Overall we are doing well. Lots going on, but we are ok. I'm feeling good myself and am plugging along.

Stubborness Runs in the Family

Posted 2 days ago

Ellis has a note on the side of his isolet that lists the reasons he knows he is special. One of them says "Because my Daddy will miss ESPN Game Day just to be with me". Todd and I left the house during the Auburn/Ole Miss game and other than finding the game on the radio for the drive down Todd didn't seem all that disappointed. I guess Ellis's reasons he's special are right on the money!

Ellis is doing well. He now weighs 3lbs 4oz and has been moved into a double wall isolet. Basically the change in isolet means that he is able to stay warm enough on his own and doesn't need additional heat in his bed. As Ellis has grown and begun to eat more he has also developed what many premies struggle with - acid reflux. It scared me a little in the beginning because his breathing and heart rate would both dip and he would need to be stimulated to get back into a tolerable range. The nurse practitioner explained that all of this could be due to acid reflux, his PDA getting worse, or an infection. Acid reflux I can deal with. Worsening of his PDA or an infectioned sounded scary!

They did another echo of his heart and the cardiologist came by and listened to his heart. He explained to me that his PDA was still moderate to small but had not grown. It wasn't bothering Ellis and wasn't sending additional blood into his lungs, so he did not feel that the PDA was contributing to his drops in breathing and heart rate. Being an interested mother and having a lot of doctor experience I tried to listen well and understand what the cardiologist was saying. I asked a few questions and repeated a few things back. At the end I said, "Wow! I think I understand what you just said to me." to which the cardiologist replied, "Congratulations. You just learned in 15 minutes what took me 14 years of school." LOL! A cardiologist with a sense of humor, who knew!

Infection has also been ruled out for Ellis so right now we are operating under the assumption that he has acid reflux. He has been put back on his high flow cannula which Todd and I were both bummed about but he is still breathing room air and doing relatively well. His feedings have been slowed down (he gets food 24hrs a day!) to help his body digest and ease the reflux symptoms. It feels like a step back but Todd and I have both been assured this is common and should be something he grows out of. Ellis and I had a serious chat about his remembering to breathe while eating to which he sat quietly and did not comment and then proceeded to hold his breath - booger!

All in all we are doing well. I'm healing well from the port placement with minimal soreness. I'm in denial about my PET scan and refuse to call my doctor to find out the results. I will find out when I see him, but as of this moment I don't want to know. I'll cross that bridge when I get there. Right now I'm happy and looking forward to the future and bringing Ellis home. No time to think about sucky cancer.

Specific prayer requests:
- Ellis will continue to grow and learn to breathe through his reflux
- I will continue to heal from my port placement

Port Placement

Posted Oct 11, 2012 4:45am

Yesterday I had my port placement. It went well. I was mostly concerned what side they would place my port because after I had my original port removed I got a tatoo that says "Love the moment" to remind myself that things may be hard but that doesn't mean we can't have joy through our trails. I was afraid if they put my port on the left side and messed up my tatoo I might not "love the moment" like I should. LOL!

There was no need for my vain worry because my port is on the right. I learned that surgeons place ports on the left but radiologists place ports on the right. They use your jugular to thread the tube through and get a clean line close to your heart. To be honest the word "jugular" freaked me out. All I could think was, "isn't that what killers slash in all those horror movies?!" After a little Ativan and anesthesia I honestly didn't care what they did. I woke up hungry, rested, and wanting to see my baby.

Mrs. Janet (Todd's mom) stayed with me through the procedure and Todd's dad went and hung out with Ellis. It made me feel good knowing he wasn't missing his family time since I wouldn't be able to visit him like normal. Mrs. Janet wheeled me up to the NICU. I touched Ellis a little but didn't hold him since I still felt a lot of my anesthesia and was starting to get stiff. Mrs. Janet read him The Lion King and then we said our goodbyes and headed home. I needed to rest.

I slept the remainder of the day. Now that the anesthesia is fully wearing off I'm starting to get stiff but its not painful. I basically have a little extra plastic in my body. It's so small it doesn't really hurt persay, but the fact that you shouldn't have random pieces of plastic placed in your body makes it a little uncomfortable until your body adjusts.

Ellis is doing great! He is finally over the 3 lb mark weighing in at 3lbs 1oz. He's still having trouble gaining weight like they'd like so he now has increased calories and protein added to his breast milk. (Kind of like a baby body builder!) He did well on his low flow cannula at 1.5 yesterday and only had 1 episode where his heart rate and breathing dropped. The nurse said she can still hear his heart murmer related to his PDA and if that continues she will get the cardiologist involved again sooner than later. He has become more active and loves to look around and be held. I held him for 3 hours straight on both Monday and Tuesday which is why I didn't update the blog! Too busy holding my baby. I love just watching him. He's starting to develop a personality which cracks me up. I predict a stubborn, strongwilled child. Help me!

All in all Ellis and I are doing well. I'm sore healing from the placement and he needs to gain weight, continue to breath well, and have his PDA fully close. Todd is our rock through it all; taking care of both of his babies.

Postpartum and PET Scans

Posted Oct 5, 2012 9:47pm

 

Happy Friday everyone!

I've started doing it again....writing blogs while I can't get to sleep, that is. But, this time I'm too tired to drag myself out of bed to get the iPad or laptop. Last night as I laid awake I wrote the most heartfelt and poignant things. It was a masterpiece! Unfortunately, that blog is now lost in the recesses of my brain never to be shared simply because I lacked energy. Clearly I have a lot to learn as a mom because isn't the first rule of mommy hood "What does lack of sleep have to do with it?!" Like I said, I've got lots to learn.

Most of the time on the blog I've talked about Ellis, but this is really about the two of us and our journey together. Today I had my PET scan. First off, let me start off by saying to all of my girlfriends who have been through childbirth - "You forgot to tell me about the insane hormones after childbirth!" Not cool, so not cool. About 5 days after having Ellis I turned into this crazy ball of hormones. I seriously cried every morning and every evening for about 6 days straight. I still have to give myself pep talks to avoid crazy crying lady. So, wrap all those hormones and crying up with a baby in the NICU and me with cancer, and the sheer idea of a PET scan was enough to whip me into a panic. We are talking sobbing, shoulders heaving, mascara running, hot mess. It wasn't pretty.
Thankfully over the last couple days I have started to calm down and my hormones are slowly leveling out. Today I was able to face my PET scan with optimism. I didn't cry. I kept my cool. I prayed a lot. I don't know how many of you have had a PET scan but mine went a little like this:

- IV put in and injected with a radioactive isotope.
- Drink nasty chalk stuff. (Ick!!!)
- Lay in a quiet room for an hour to let the isotope do its stuff.
- Go into PET scan room and ly down while a machine that looks a lot like a CT scans me for about 15 minutes.

Overall, not a terrible experience. I was afraid that I would start freaking out during my hour wait time, but I kept my cool. I was actually singing "This Little Light of Mine" in my head and just talking with God. He knows how I feel about the situation. I think it's unfair. I think it sucks. But, my cancer wouldn't have been found so fast if I wasn't pregnant. Life is funny... I certainly don't understand the situation but I'm going to choose to believe that it will all work out for the good in the end. I know that is all sappy, but humor me, ok? Oddly enough, I feel ok about the PET scan.
After the PET scan I went back to hang out with Ellis. Ellis is doing great! He is now 2lbs 14oz. Todd thinks he's going to break 3 lbs this weekend. We shall see. Ellis has been having some episodes where his breathing decreases and his heart rate goes down. It's a little frustrating since he sped through the bubble cpap and high flow cannula that he's now slowed down. But, he's still little and needs time to grow and mature. He's only 2 weeks old. He is eating all his food and they've been able to remove his pic line. Which means he can wear clothes!!!! I'm so excited about him wearing clothes. Thanks to a friend of my parents I am fully stocked with preemie clothes. They are still huge on a little 2lb 14oz boy, but its so stinking adorable!

Happy 2 week birthday Ellis!

Quick Update on Ellis and me!

Hi Everyone! I'm sorry I wasn't able to update the last couple days. The website and my iPad at Northside were not getting along.

Ellis is doing great! The cardiologist took him off his medicine for his PDA because he thought it showed enough improvement. His PDA is still not fully closed but the doctor believes it will close the remainder on its own and doesn't want to subject him to more medicine that's hard on his little tummy.

Ellis is now back on normal feedings and is all the way up to 18ml (his goal is 22ml). The nurse practitioner told me this morning that if he is able to go up on his feedings tonight they will be able to stop his IV.
He is also now off the high flow nasal cannula and on a low flow cannula. He's doing good but is needing a little more oxygen with the low flow. The nurse said she is ok with that and will let him continue to progress and develop today.

Todd and I were able to give Ellis a bath Tuesday night. That was hilarious because he was squirming all around and the nurses manhandle these little things. They really are very resiliant.

I am scheduled for my PET scan this Friday and will then have my port placement next Wednesday. As of today I am off my motrin (which I've been using for pain management) because it is a blood thinner and I have to be off blood thinners for a week before the port placement. So, now I'm flying solo on good ol' Tylenol.

Please pray for Ellis's breathing to continue to improve, his PDA to close completely, and for him to continue gaining weight. Also pray that my PET scan shows the doctors what they need to see to treat me properly and that I won't be too stiff after my port placement to not be able to hold Ellis for too long.

Thanks!

Rainy Monday

What a yucky day....Ellis has been more active today and looked all around all afternoon. He obviously doesn't care that its raining outside.

The doctors discovered that Ellis has a PDA (which the way I understand it, is a vein/valve that is used when they are in the womb that circumvents their lungs to get blood flow back to the heart). After birth the PDA closes and isn't used again. Since Ellis was born at 28 weeks his PDA is still open. It isn't bothering him but it is something that needs to be closed. He has been on medication for the past 2 days (one dose every 12 hours) for the past 2 days to help close the PDA. He will have an echo again tomorrow morning and see the cardiologist to see if the PDA has closed.

Ellis is doing great. He is now on a 2 on his high flow nasal cannula (like his cpap but less). He is breathing well and stays on room air pretty much all day.

Ellis now weighs 2lbs 13oz, so he is back to his birth weight! They have pulled back on his feedings some while he is getting the PDA medicine because it is harder on his tummy. Once he's off the meds he will go back to his regular feedings and start bulking up again.

I'm doing well. Healing as quickly as I can. Going to see a tiny little boy each day gives me incentive to get back in the swing of things quickly.

Ellis and I have enjoyed reading "Harry Potter" and are just waiting to see daddy later this afternoon.
Please pray for the PDA medicine to do its job quickly so Ellis can get back to his regular feedings.

Thanks!

Quick Update

Ellis is still doing great. He is starting to gain weight faster. He is now at 2lbs 12oz - almost back to his original birth weight. My dream of having a rolly baby with cubby cheeks is in sight!

They decreased his cpap from a 4 to a 3 and he is still rockin' it out. His breathing is holding steady.

He is now eating 10ml of milk. Hard to believe he was only eating 2 ml at the beginning of the week. He should go up on his feedings 2.5ml each night as long as he's doing well. His goal is 22ml.

He's sleeping well and loves being on his side. Now, I'm off to sleep myself!

One Week Birthday!

Posted Sep 28, 2012 5:03pm

 

Ellis is one week old today! In some ways it seems like a really short time but in others it seems like I've had him forever.

He's doing really well.

Ellis has tolerated his feedings well and hasn't had to miss any feedings lately. He has gained weight and now weighs 2lbs 9 1/2 oz. By the rate of his feedings he should start bulking up quickly. When I spoke with the PA this morning she said he was doing well with his decrease on his cpap (move from the bubble cpap to the lower pressure one) that she is going to start weening him off the cpap entirely. He is still breathing room air and hasn't had any problems.

The nurse did mention that his urine has been a little low and his blood pressure was low when he took it at first. When he retook his blood pressure it was back to normal, so they are just going to watch his urine output, but right now it isn't anything to worry about.

I started reading "Harry Potter" to Ellis. Yes, you read that right - "Harry Potter". All of his baby books went by so fast. He needed something that would take some time and be an interesting read. So far he seems to like it.

Today while I was reading to him I noticed a little spit up. The nurse said that was normal with his increase in feedings and cleaned his mouth and left a wipe for him to drool onto. I continued reading. As I read I noticed Ellis was becoming more and more fussy. I tried to calm him down because he was showing the stress signs I had been taught. He was having a meltdown! Oh no! This was my first real mommy test! Yikes! I tried to fold his little arms into a fetal position to calm him like I had been taught but he wasn't having any of it. It was coming. I could feel it. The dreaded baby cry which will cause me to cry with my overactive hormones! Failure! I would be labeled a failure as a mother after just one week on the job. I had to think fast...."he's on his back!" "how did he get onto his back?" "I bet that's what he doesn't like". I quickly found his nurse and had him turned on his side. Disaster avoided and my status as a good mommy was still intact for another day.

Ellis is sleeping now and I'm just chilling in the glider.

Happy one week birthday Ellis!!!

Skin to Skin

The NICU is really cool. We get a call from his PA each morning with an update and are allowed to ask any questions we like. We can touch him during his care times at 3, 6, 9, and 12.

Ellis went on a bubble cpap to help his breathing and was set at a 7 originally. He had oxygen if needed but generally had only slightly higher than room air. The NICU started him on tropic feedings which are small feedings just to get his body used to milk.

By the second day I had stretched and walked so much I was able to change his diaper. That night we did our first skin to skin time. Skin to skin is where I hold Ellis against my chest and he can smell me, feel my warmth, and hear my heart beat. Skin to skin is great for the baby because it relaxes him and I love it because it makes me feel close to him.

Erin went with me to my first skin to skin time. She was like a photograph ninja. She was all over the place! I just closed my eyes and enjoyed holding my baby. When I looked up Erin was crying. What's wrong with me?! I didn't cry when he was born. I didn't cry when I held him the first time. .... Oh well.... Erin started reading "Love You Forever". Half way through the story as Erin read, "I'll love you forever, I'll like you for always, as long as I'm living my baby you'll be" I started bawling! It was an ugly cry too. As I was sobbing I said, " this is a horrible book!". Erin and I both laughed and gathered ourselves together and finished the book. Holding Ellis the first time was so special. I'll never forget how that felt. It was the best feeling ever.

The nurse told us that she was going to give him a bath that night and I asked if I could watch. She moved her schedule to a time when Erin and I could come. I was so excited I couldn't sleep. We woke up at 5:20 and headed to the NICU for his first bath. The nurse let me help. I soaped him up, washed his hair and combed it, and rinsed him off. He seemed to like and not like a bath.

From there Ellis has improved and changed each day. He moved from a 7 on his cpap to a 5 and today he moved off the bubble cpap to a lower pressure machine. He breathes room air most of the day. They have also increased his feedings and after losing some initial weight he has started to gain. He currently weighs 2 lbs 9 oz. Ellis loves to sleep on his side and hold hands. He loves food and is currently deciding if he's interested in a pacifier or his finger more. He likes stories, being held, and wiggling.

Day One

Ellis was born at 7:47 am on September 21, 2012. I got to see him for a few seconds in the delivery room. They took his clap off so I could see his face. I kissed his head about 7 times and told him I loved him and would see him as soon as I could. He sqeeked at me which I loved because I knew his lungs were working He looked so much better than what I expected of a 28 week premie. He wasn't all wrinkly and his color looked great. I was told that on a rating out of 10 he was between an 8 and a 9 which even some full term babies don't.

My OB asked if I wanted a regular room or if I wanted to be on the GYN floor. I asked if I could be on the GYN floor or high risk pregnancy because I just didn't know how I would react being around other moms who have their babies with them. As soon as I went to the recovery area I realized my experience was going to be different. In recovery there were moms with their babies but I was alone. It didn't bother me as much as I thought it might. I knew my baby was in the best place.

I was moved to a room in high risk pregnancy. I was so glad to be somewhere that people knew me and that didn't feel awkward. The NICU took some adorable pictures of Bam Bam without his cpap on so I could see his face. As I lay in the bed willing my legs to wake up from the epidural I stared at his pictures and wondered, "Are you an Ellis Harden or are you a Sidney Charles?". My goal for the day was to get out of that bed and see my baby!

Around 5:00 that afternoon the nurse came in and said we could try to get up. Rolling over and scooting to the edge of the bed was the hardest part. She said I needed to be able to do it on my own, so that is what I did! Only one hand to grip and I made it with some pain to the edge of the bed. Standing up was the easy part and it felt antastic to stretch! I walked just a little and then returned to bed. The nurse told me to rest and then I could venture to the nursery around 8:00.

I left my room at 7:55 headed to see my baby. I was warned that my epidural pain pump only had 6 doses left before it needed to be replaced. I was told not to stay in the NICU that long - yeah, right... Our first NICU nurse was wonderful. She walked us through every number, every piece of equipment, and everything we should do to keep our baby comfortable. Todd changed his first diaper and helped weigh Bam Bam. Needless to say, my epidural wore off and we had to leave after being in the NICU an hour and a half to get me some much needed meds.

After taking care of my pain Todd and I sat around discussing the name. Which was he? Ellis or Sydney? We came to a decision that our little Bam Bam was most definitely an Ellis Harden Bamberg. Ellis means "the Lord is my God" which fits him and our situation.

Our Story

During my first trimester my perinatal specialist discovered a tumor in my right ovary. I had surgery to remove the tumor and it was confirmed that the tumor was my colon cancer that had moved into my ovary. I then had 3 MRIs that all came back clear and met with 2 oncologists to discuss my care. Both agreed to wait until after delivery and then do a PET scan.

At the end of my second trimester my OB did a biopsy of my cervix and discovered my cancer had moved yet again. My colon cancer is now in my cervix and is in a spot that makes it inoperable.

My perinatal specialist and OB decided that the best course of action was to deliver the baby at 28 weeks 2 days with the assistance of steroid shots. I received my shots and little Ellis Harden Bamberg made his early debut on September 21st at 7:47 am. He weighed in at 2lbs 13oz 15 1/2 in.

Ellis and I are both stubborn. We don't want to be defined by a situation because we are more than just a premie and a cancer patient. We love books, food, and snuggle time. We are also occasionally fussy but we feel it's always justified =)