Saturday, September 22, 2012

Birth Story Part 2 - Heart Failure

{I am finally writing this birth story 11 months after Jackson was born.  I finally have the strength and I think this story should be written and shared with anyone it can help, but mostly this is for my son.  This is a love letter to you, Jackson Allen.  You are worth everything I have, even my life, and if I could do it all over again, I would go through all the pain to give you life.  You are the best thing that has ever happened to me.}

I went home and thought I had bronchitis because I was struggling so much to breathe.  I kept gaining weight, and the swelling was getting out of control.  I called my OB's office.  The nurse advised me to get some over the counter meds, and told me it's normal to be so exhausted and swell because I had surgery.  I continued to swell up with pitting edema of around 16-20 seconds. ...I was huge!  

On Saturday night (one week after Jack was born) I woke up in the middle of the night and couldn't breathe.  I panicked, but once I sat up, I could breathe a little.  I got my husband and told him I thought I was dying.  I called my mom and told her that it was very bad, and she said to close my eyes and she would be over in the morning.  This was about 4am, and honestly none of us had any idea how severe this was.  We all really thought I had a very bad cold.  I fell asleep sitting up and my mom came over at 7am.

We went to the urgent care clinic.  He listened to my chest, looked at legs/feet, got a very concerned look on his face, and told me that I needed to head over to the ER.  We headed over there, checked in.  I remember being put in a wheel chair and thinking this is a bit much for bronchitis.  Can't these people just give some medicine and send me back home so I can see my new baby!

I was poked what seemed like a million times, and my veins just kept collapsing.  They checked my oxygen level did blood tests and an arterial spray and I think at this point a chest x-ray.  I was immediately started on oxygen because my level was very low (I don't remember the number).  And after 20 minutes or so, the dr. came in and told me that they thought I had pneumonia and I had to stay the night.  I was SO upset.  My mom called my husband to come to the hospital (he was home with Jack).  The doctor told me they were going to run some more tests, and someone would be there soon to get me for those.  During this time, my aunt and uncle went to my house to watch my son, and my husband came to the hospital.  Shortly after he arrived, I was taken up to do some more x-rays and an MRI with iodine pushed through my veins during the test.  On that test, my vein blew and the Iodione bubbled up in my arm.  I screamed in pain while my husband waited outside the door.  It was the worst pain of my life.  I am not comfortable screaming or carrying on in front of strangers (just like the rest of the world), but I could not help myself from screaming and crying in pain. 

After all these tests, I was also visited by a lactation consultant.  I pumped and dumped, and finally calmed down from the horrible morning.  The doctor then came in.  He was an old, gruff man who told me I had congestive heart failure, I might need a heart transplant, and I'd be in ICU for awhile.    He was also SHOCKED that the hospital sent me home with a hemoglobin of six and immediately started a blood transfusion as well as Lasix, medicine to get the fluid off of my heart and lungs.  He then walked out of the door.  I held it together while he was in the room, but as soon as he left, I just started balling.  All I could think about was my baby.  I thought I was going to die.  Who would mother my child?  Who would love my husband?  Who would my sister call when she was upset?  I remember looking over at my Mom and thinking, I'm supposed to be taking care of you when you're old and sick.  You should be laying in this bed, not me! 

A few minutes after the first doctor left, another doctor came in the room to talk to us about what was going on. He explained that my hemoglobin was very low, my lungs were full of fluid and my heart was failing, and, yes, this was very serious.  We then decided with the Dr. that I should be transferred to a bigger hospital that could better take care of a serious case like mine.  Before I knew it, I was being loaded up in an ambulance by a man who looked like he was 12.  I remember him telling me that I must be pretty bad, because they had to take me STAT and they never have to do that.  I remember thinking this kid needs a lesson on etiquette, but I was too tired and scared to bother with telling him he was being rude and insensitive.


 It was a terrifying ambulance ride.  My husband held my hand the entire way and told me landmarks as we passed them, so I knew where we were.  Other than that, we never spoke word. My husband isn't a hand-holder or a cuddler.  But he never let go of my hand, and I remember looking at his face.  He seemed old and scared, and I'd never seen him look like that before. 

When we arrived at the hospital, they opened the doors and I saw my dad.  He had the same look on his face, and I'd never seen him look so upset.  Everyone just looked so old and serious.  That's when I really got scared.  My dad was scared, and he's my strong, tough superhero who's never scared of anything.  He just kept talking about how he'd had his phone on silent and I didn't really understand what he was talking about. He was babbling about nonsense, and I was confused.  I learned later that my mom had been trying to get a hold of him all morning, because she knew something was very wrong, but he was working outside and didn't hear his phone.  My grandparents ended up coming over to his house to tell him that I was being rushed to the hospital, and he ended up seeing the ambulance and followed it all the way to the hospital.  As a parent, I cannot imagine how terrifying that must have been for him. 

The Dr. at the hospital, the same hospital where my son was born 8 days earlier, told me that I'd have an echo, ekg, more blood tests, and I'd continue my blood transfusions and lasix.  She told me I was having trouble breathing because my lungs had filled with fluid, and I was literally drowning. My left ventricle wasn't putting out blood as it needed to, so my heart was failing.  I basically said ok, ok, but can Jack stay with me, and she allowed it.  It was the best gift. 

After a few hours, everything calmed down.  I felt okay because I was on oxygen and I could breathe, not really talk or do anything, but breathe and that felt better.  My husband ended up leaving to get a change of clothes and our son while I slept and my parents stayed with me.  He came back, my dad left, and we had a party for 4 in the ICU room all night long. 

I don't really remember my ICU stay.  My husband and mom have filled me in a little bit, and I remember bits and pieces, but I think I'm mostly thankful for the loss of memory of those 3 days.  I know that nobody slept that first night.  I know the nurses were in all night as heart monitors went off, oxygen monitors went off.  They were constantly taking vitals and blood.  I know I woke up in a panic around 3 am with chest pain and the inability to get air.  The next day I had an ekg and echo, used the bathroom quite a bit from the lasix and started to feel better.  The second day was uneventful.  I slept a lot because I was starting to be able to breathe.  We stayed another night.  My mom went home to sleep because she hadn't slept for 36 hours, and my sister-in-law took Jack home with her to my mother-in-law so that my husband and I could sleep as much as one can in ICU.  

One thing I treasure and remember so well, is my husband crawling in the hospital bed with me around 11pm on the second night.  He wasn't supposed to, but he did, and he held me all night long.  The nurse came in, looked at him and let us be.  At that moment, I finally felt like I was going to be ok.  I felt safe again. 

The next day, my mom, dad, mother-in-law and Jack returned, more tests were done and the dr. came in, told me that they had gotten rid of the fluid in my chest, my heart was functioning at an acceptable ejection fraction, 50%, and I could go home.  I lost 18lbs in 36 hours from lasix.  I was sent home with  papers about living with Congestive Heart Failure, an order for 6 week follow up echo and blood work, and an order to see a cardiologist. 

-5 days Post-Partum - Crazy Swelling
10 days Post-Partum (much less swelling!)
 
We went home, saw a cardiologist two days later who told me that I should pull out of this, he hoped that my heart would return to full-function in the following months.  He was shocked at the horrible care I received from my OB.  He assumes the CHF started around 34 weeks, the same time when I started complaining to my OB about the swelling, exhaustion and inability to breathe.  My heart has recovered.  At my last echo, I had an EF of 50% which is considered acceptable.  :)
 The effects of my Post Partum Congestive Heart Failure were physical for months after Jackson was born.  I was tired, weak, had a poor immune system and struggled to get my hemoglobin to a healthy level.  (12-18 are normal for women my age; I still only have an 11).  But so much more than the physical effects, the emotional effects have plagued me.  

I was sick, very sick, when Jackson was a newborn and I don't remember all of it, nor was I able to treasure him and enjoy it like I wanted to.  I lost my milk from a combination of medicines and not being able to pump as much as I needed to.  I pumped during my ICU stay several times, but I was too weak to pump every 2-3 hours like I needed to, so my milk naturally weaned.  Breastfeeding was something I looked forward too, and I feel that the opportunity was ripped away from me.  That has been a struggle that I am continuously working on coming to peace with.
     
I was later diagnosed with post-traumatic stress and I've had a lot of anxiety.  Having such a traumatic event occur shortly after the birth of my child really rocked my world.  It took away my sense of stability and invincibility.  It changed me and scared me. 

Having another child?  Well that's a big topic for another day.  There are about a million and one worst case scenarios that could occur since I have a 20% chance of going into acute CHF again.  But there is one best case scenario that would give us a sibling for Jackson.  Time will tell, but for right now I'm enjoying the precious gift I've been given. 

I am appreciative for the beautiful, perfect child I was given.  I am appreciative of the life I've been given.  I am appreciative of the second chance that God choose to give to me. 

 


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