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Fetal Surgery at UCSF

Well, we did it!  Daniel and I have spent the last several weeks deciding whether or not fetal surgery was the right way to go for our family.  There are a lot of considerations, and it is not right for every family.  I briefly went over how we decided to do fetal surgery two posts back, but if you would like to know more about that, let me know!

Over the weekend, we had to stop back in at the hospital to do two rounds of steroid shots.  The steroids are a precaution in case an emergency were to occur and Cedar (our daughter's name, by the way!) had to be delivered at 25 weeks.  The steroids would give her lungs an extra boost, just in case.  Not going to lie...those hurt.  But we do what we have to do!

We checked into the hospital Monday night at about 8:30pm.  I'll admit, I was really nervous.  We had gone to see a movie the few hours before, and I could barely concentrate on what was going on!  I started to get that nervous ball in my stomach that wasn't going away.   After we checked in, they did some basic stuff--put in an IV (they wanted me on fluids the whole night before), took some blood for labs, got all my information, and went over the plan for the morning.

They made me wipe down with these:


My hospital bed:


Monitoring the baby for a while and enjoying ice cream from the pantry:


During my entire stay, it took every single nurse at least twice to place an IV or to draw blood:


By the time they were done with me for the evening, it was at least midnight.  I didn't sleep great that night...again, the anticipation was rough.  I was also not allowed to eat after midnight.  

I woke up in the morning and it was GO TIME!  My surgery was scheduled for 9am, but I was warned it might take a little longer than that.  This surgery requires multiple specialists to be in the same place--both for me and the baby.  So, it can be a bit of a task to get the team assembled.  Things remained mostly on schedule, and they took me down to pre-op about 8:30am.  Daniel was allowed to go down to pre-op with me, but when they finally wheeled me back to the operating room, he had to leave.

The operating room was impressive.  I've never seen so much equipment in one room!  The nurses were counting all the instruments (don't want to leave any in there!), and I knew I had to face the thing I was most scared about--the epidural.  This may seem dumb to some people, but I was petrified.  I didn't have one with either of my boys, so this was a first for me.  First, they had to numb me--this was the only part that hurt.  Every time I thought the stinging was done, they would push more medicine in and it would start all over.  Once that was in, though, the actual placing of the epidural catheter was painless.  Overall, it was not nearly as bad as I thought. 

After the epidural was placed, they laid me on the surgical table/bed, and they started talking to me about going to sleep.  They put the oxygen mask on me and told me to breathe.  I stayed awake for a few minutes, and then they started the anesthesia.  There is this weird moment where your vision starts to go blurry, and you realize--this is it.  There is literally no going back now.  When I wake up, I will have had a major surgery, not only on me, but on my unborn baby. 

CONTENT WARNING: SURGERY PICS!!!!!!  SCROLL PAST THIS SECTION IF YOU GET QUEASY LOOKING AT GNARLY MEDICAL PICS!!!!

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Here are some pics of the actual surgery!

 This is literally my uterus out of my body.  You can see baby is exposed and that bubble-thing is her myelomeningocele (defect area).  They had to take that out and then close her exposed spinal cord:
   

Her exposed spinal cord.  They had to close three different layers over it:



 Her cute little butt/back area all fixed up:



The incision:


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Anyway, if you're still with me after those pics, the surgery went really well.  The doctors said I had very minimal bleeding, and they were able to close Cedar's defect with her own skin.  Sometimes babies don't have enough strong skin at that point to close it up, so they have to use a patch, but she didn't need that.

Next came recovery.

As I came out of anesthesia, I became aware of a lot of pain in my uterus.  I remember saying "my uterus" over and over and they told me the epidural should be kicking in.  I also remember insisting that I had to pee, and they told me it's fine--you have a catheter in, just go!  Funny the things you are very concerned about when you are groggy!

Over the next hour I become increasingly more and more aware, although I felt majorly unable to open my eyes still.  This is what I looked like:


Not cute.  I was hooked up to a million things.  Monitors were beeping everywhere.  They had me on magnesium, which helps stop the contractions, but makes you feel hot (hence the ice pack on my forehead), anxious, and a bit claustrophobic.  When I was asleep, they added another monster IV in my right hand (my least favorite place for IVs), that they didn't plan on using, but kept there in case of emergency.

My baby had to be monitored 24/7 the first 3 days.  I had one heart rate monitor strapped to my tummy and one contraction monitor.  I could feel that I was having a lot of contractions.  Because of the epidural, they didn't hurt, but I could definitely tell when I was contracting.  This went on for a while, through the first whole day.  They tried to lower my magnesium dose (yay), but then the contractions just wouldn't stop, so they bumped it back up (not yay).  They told me I was contracting for a bit longer than normal, so they couldn't take me off of magnesium yet.

On Wednesday, the day after surgery, I really started to get anxious.  I still wasn't off magnesium.  The contractions were slowing down, but they weren't stopping.  I was starting to worry about what would happen if they couldn't stop my contractions.  I had been drinking a lot of water because the meds were making my mouth SO DRY.  My Wednesday morning, I could tell I had drank way too much water, and I started throwing up.  Throwing up with a fresh incision hurts like NONE OTHER.  They started pumping me with Zofran to get that to stop.  In addition, by the end of the day, several other stressful things were happening.

1. My back pain was starting to get unmanageable.  It might have been because of the contractions, but the major issue seemed to be the hospital bed.  I was practically crying, begging them to help me. My poor nurse tried changing me into other positions, but because the surgery was so fresh, I couldn't lay on my side yet.  Nothing was working.  They even put in an order for the acupuncturist to come and try to help me.  She never came, but I thought it was a nice gesture.

2. My oxygen levels were getting worse.  I was on oxygen this whole time, but any time they tried to take me off, or I started to doze off to sleep, my levels would drop and freak everyone out.  They attributed me oxygen problems to the magnesium, but they didn't really want to take me off magnesium until my contractions slowed down.  Problems.  They also thought they heard fluid in my lungs and called for a chest x-ray.  While they couldn't see any, they still thought they heard it, and decided to treat it with meds.

It was at this point, Wednesday night, where I admit I wanted to give up.  I knew there was really no way for me to do that, but I looked right at Daniel and told him I couldn't do this.  Could they not just knock me out until this whole thing was over?  Multiple times, I just looked up at the statues I had brought to remind me of my boys and of course, baby Cedar:


I said a LOT of prayers and just tried to concentrate on who I was doing this for.  That night, they decided to give me a muscle relaxant for my back and to start pushing the meds to clear my lungs.  Within about 15 minutes, I could feel myself falling asleep.  I fell asleep sitting straight up, which seemed to work OK for the time being.

I woke up at 2am Thursday morning, and I felt like a new person.  I could immediately tell I was breathing easier.  My back was not in horrific pain.  I had slept for 4 hours!  This was a record since Monday night.  I looked around, and there was no one to tell!  Daniel did wake up a few minutes later, and I just waved at him and said, "I feel better!"  They had also turned off my magnesium.  The combination of all these things was magical!

Thursday was a great day, and I was able to start eating again and just relaxing a bit and watching TV.    When the doctors came to see me on Thursday they were completely shocked.  They kept gushing over how great I looked and said I was far ahead of the curve at this point.  My nurse even let me sit up and dangle my feet over the bed!  It felt awesome to just sit and not be fully laid up in that horrendous bed.

Friday, I continued my recovery.  They started taking me off monitors and took the epidural out.  We switched to oral pain medication.  They continued my muscle relaxer to help my back, although it still wasn't feeling great.  The hospital massage therapist even came and gave me a massage!  They started pushing a lot of medications to help with constipation--a major side effect of the pain meds.  They gave me an enema both Friday and Saturday (yay...).

By Saturday I had walked around a bunch and was ready to be discharged! My mom had flown in on Friday and so Daniel left to drive home Saturday morning. My mom and I left the hospital about 3pm and now we are staying in the Family House about 3 blocks away from the hospital.

Cedar is looking great at this point.  Her fluid levels were at a 15 on Saturday, which is awesome!  I can feel her kicking around in there all the time.  We are still working on getting my back pain under control, but this cute brace came today, so yay!


My main job now is to get better and will Cedar to not come early.  She just needs to stay in there, with good fluid levels, until 37 weeks, when they will deliver her by c-section. Once you have had fetal surgery, you are never allowed to go into labor again--for any future pregnancy.  All pregnancies after this would also be considered high-risk and would have to be monitored very closely.  Luckily, we decided before the surgery that Cedar would be the caboose of our family, so these won't be concerns for me (another factor for us in deciding whether or not to have fetal surgery in the first place).

Thank you to everyone for your endless prayers and kind messages this week.  I will be doing another tender mercies post soon with all of the ways I have felt people's support this week.  THANK YOU AND I LOVE YOU!!

You can watch all my video updates HERE.

  

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