Surgery # 3 and recovery

This time handing Reid off to the surgeons was easier.  We knew he was in good hands and we were anxious to just get it over with.  This surgery was going to take his double colon and 1) detach it from his right bladder and 2) make it one large colon -think double barrel shotgun and make it a single barrel shot gun instead.  Reid's urologist was also going to be in the operating room just to look at Reid's anatomy again to make sure things were still working as they were suppose to.  His anatomy is so unique that any chance that his surgeons have to see inside him they take it.  So to say the least we were  slightly more at ease with this surgery over his last surgery.  So off he went and we went to the place we were just at 2 weeks ago, the surgical waiting room.  This surgery again took longer than expected. I hate that.  It was about 4 hours until Dr. Sullivan his general surgeon came out to tell us that he did great.  She said he is a chunky baby and he had 1 inch of fat on him (breastfed baby!) so she had to cut him more than she expected to get a good view of his colon and bladder.  When we got back to the PACU we didn't realize how much more she had to cut him!  His poor tummy was cut open from one side to the next.  He looked like a little frankenstein with 2 very swollen stomas.

 He also had a feeding tube in his nose because he couldn't eat until he was able to poop.  When a child has surgery on their colon or bottom they have to wait a few days after surgery for the inflammation of the colon/bottom to decrease.  But in the mean time the liver is still making bile and filling the stomach with that bile.  So Reid got a NG tube that went to his belly and they put suction on the tube so that any bile was sucked out.  If they didn't do this the bile would fill his tummy and eventually he would throw it up.  He didn't really mind the NG tube which was surprising.  I was shocked at how much gunk (bile) they were getting out of him.  I did notice that the suction seemed to be really high and I didn't quite understand at the time the reason that they were doing this.  All I was concerned with was the fact that he couldn't eat until he pooped.  Which meant I was pumping again.  I hate pumping.  Thursday night Reid just slept all night.  He was tired from surgery and needed to heal, but this was okay with us because the SF Giants were in the playoffs!  That first night nurses and Dr's would walk in our room to "check on" the sleeping child who was hooked up to a monitor and slowly walk out while watching the TV.  We were fine with it other than the Dr. who wasn't discreet about it and just walked in and stood in front of the TV.  Um at least pretend to be doing something.  Friday Reid was in good spirits but didn't like the bottles.  He has not been a bottle kid other than when he was sedated after his last surgery.  So this was a worry for everyone.  

While we were in the hospital I told the nurses to not worry about cathing him, that Michael and I would do it each time.  This wasn't to step on anyones toes but we knew how to do it and do it well.  They seemed to have trouble so it was just easier for us to do it.  His urologist supported this and had to tell the nurses a couple times to not cath him and just let us do it.  I was happy when he told one nurse in front of me "Mom knows how to do this better than you because you tried 4 times and couldn't do it, follow my orders and let Mom do it".  I didn't like that nurse so this was nice ;)  Sunday morning (3 days after surgery) Reid finally pooped out of his stoma!  This meant he was able to eat.  Hooray!  No more pumping!  So I nursed him.  Ooops to much… he threw up about 30 minutes later.  So I waited 3 more hours and tried again… same thing. WTF.  Did we have another problem on our hands?  Luckily the nurses had confidence in Reid and my ability to know my son and asked me.  I said I think he just needed to be eased into eating and I should have started with bottles and little amounts.  They agreed and so back to bottles and pumping.  

To be honest I don't remember anything big after this point… we were released to go home the next morning, Monday which had made that our shortest hospital stay! I was so excited to come home and see Parker!  We were told by Reid's urologist to continue cathing him but only 2 times a day now which was nice.  I was hoping to leave the hospital and not have to cath him anymore but oh well. Twice a day wasn't bad.  This was progress.  

That evening Reid was very fussy.  My Mom volunteered to stay the night with us just incase I needed to sleep and Reid decided he wanted to be up all night which was typical of him.  So we went about our evening and it was bath time.  Reid still was only able to have sponge baths so into this netting he went and I washed him up.  Since his spinal surgery I had been VERY VERY careful to not get any water on his back.  I squeezed out any water I could and then dabbed him with the wash cloth.  I picked him up and in the mirror I saw his back. 

My heart stopped.  

Did his back incision look… open?

Did it always look like that?

I knew the answer to these questions. I instantly knew.  

His incision had opened.  

I yelled for my Mom and she said call the neuro surgeon.  

He had looked at Reid's back that morning before we were discharged and maybe he had seen this?

Was this okay?

I knew it wasn't.

I finally got a hold of a different pediatric neurosurgeon and had to explain Reid's story (this takes time) and what had happened.  

I also noticed he had a fever.  

His first fever.

CUE PANIC

I felt like I was going to throw up.

Come on! Seriously, I just got home!

The next morning (after sleeping maybe 2 hours and taking turns holding him with my Mom <3) I spoke to his neuro surgeon who said bring him to their ER and they would admit us to look at his back. So we dropped off Parker at the babysitters and went to Santa Clara.  

The place we had just left 22 hours before… we were back. 

Week at home.. back at hospital.

Home.  It felt so good to walk into my house with Reid and sit on my couch and look at my stuff and not hear monitors beeping, kids crying, nurses chatting.  It was glorious.  Until 30 minutes later when I had to cath Reid.  The first day it took 3 people to cath it.  One to hold him down and try to distract him, one to cath him, and one to hold the cup where the pee went into.  This sucked.  The first time the cath wasn't going in as easy as before and I starting freaking out.  Was I pushing too hard, he was screaming so much I didn't know what to do.  I couldn't get it in.  I was ready to give up, he was sweaty and screaming, and I was on the verge of a panic attack.  I couldn't do this, was this my new normal?  I didn't want to do it and he hated me doing it.  Finally after a few minutes of trying I felt the cath move into his bladder and pee started to come out.  EXHALE.  We made it, we did our first cathing outside of the hospital.  It was scary but we did it, unfortunately not alone.  I hate asking for help, and I needed help.  Every 3 hours I needed 2 other people to help me.  Luckily I have an AMAZING family who were here for me.  Every 3 hours, they coordinated between themselves who was going to help me.  It is so humbling even when it's your own family. The first day was the hardest. Michael and I woke Reid up at 3am to cath him and hope that it didn't wake up Parker… which it didn't.  Everytime I touched Reid I would grab his diaper and hope and pray that there would be urine in the diaper.  I didn't know if I could do this forever and it was wearing on me.  It was difficult and he screamed so much I hated doing it.  After 2 days I was able to cath him with only 2 people thanks to my amazing husband and his ability to rig stuff up that works in the oddest ways.  He cut a hole in the lid of the cup that Reid's urine goes into and we were able to thread the cath through the lid so that we didn't have to hold the cup and pee wouldn't get everywhere!  Thank you Michael :) I also found that if I cathed him while he was in his bath net (Reid could only be sponge bathed) it trapped his legs underneath and I could cath him myself.  I was pretty flipping proud of myself.  And the mirror distracted him enough to not make him scream.  After cathing him for 5 days I picked him up and laid him on his changing pad for him morning cath but this time was different and life changing.  HE HAD PEED IN HIS DIAPER!!! I cried.  I cried and yelled for Michael and he was just as happy as I was.

It's adorable how much they love each other. 

Parker gets Starbucks when he stays at Papa and Gigi's.

Two TV watchers. 

That week went by so fast. One thing that I knew I needed to do was see a therapist.  After the awful time I had mentally and emotionally during our last hospital stay I knew that I needed some help.  So I saw someone.  It helped to talk… but they couldn't get my any medication to help during the really scary moments quick enough :(

I had created such a bubble for Reid and I that it was nice to just talk to someone new.  I don't know if it was because of the new events in my life or the effect of sleep deprivation but my personality and soul changed.  Ever since returning from the NICU I felt like I wasn't as socially pleasant as I used to be.  It was like I had so much to worry about that societal norms went out the window.  I found myself being very self centered and only talking about Reid to others and what we went through… without then asking about other people.  I didn't like this, I didn't like the person that these life experiences had made me.  I felt tainted.  I felt as if because of all this I had a dark spot in my soul that could never be taken away or resolved.  Why did this happen to me.  Before all of this I prided myself on always having a positive perspective on things.  Even in the worst of situations I found the silver lining.  I was able to still be happy and unaltered by negativity in my life.  But not anymore.  Don't get my wrong my heart warmed when I looked at Reid and I truly loved adding him to our lives, but that didn't erase the emotions that I had felt.  I had never felt anything like that before, I never knew what fear was until our NICU stay and then Reid's first surgery.  Eventually I hope that I will be able to look back on this time in our lives and feel grateful that we made it.  We made it out of this scary time and have conquered.  One day.

As the week at home was coming to an end I started to get very panicky again.  I was worried about Reid going under anesthesia again so quickly, but I trusted our surgeons.  I was happy that this surgery was going to be performed by Dr. Sullivan who we loved.  Since Reid had started peeing on his own we were hoping to be able to stop cathing him while we were in the hospital.  I didn't want to think about how long we were going to stay for this surgery.  I didn't want to get my hopes up about going home so I just packed for 2 weeks and was hoping to not have to request new clothes from my family.  I was hoping to soak up as much Parker time as I could…. but 2 days before leaving he spiked a fever. :( This meant he had to go stay at my parents because Reid absolutely could not get sick.  If he had a fever or cough during that week his surgery was going to be canceled.  This would push his colostomy reversal farther back and my return to work.  I was over his colostomy.  I was so over him leaking out of his diapers at least once a day and up to 4 times a day on a bad day.  So we had to say goodbye to Parker early and just FaceTime with him to say bye.  I hated this.  I hated being away from Parker.  If you would have asked me when I was pregnant with Parker or Reid if Parker would even be staying at my parents house for 2+ weeks I would say you were crazy.  But life throws curve balls and I am being thankful that I have such great parents to be able to take him in without a second thought and then go see him his first night back at home because they miss him.  We are so lucky.

The night before leaving for Reid's surgery I couldn't sleep.  I was so scared about what was going to happen during this surgery and hospital stay.  I couldn't take anymore surprises.  But the sun came up, and the day went on.  I checked Reid into the pediatric ward and sat with him while he played in the crib.  This was happening and instead of being scared and wanting to run I embraced it and decided try and make this a positive thing.  Looking at the positive: Reid does not have any life threatening complications.  He has an amazing team working on him and the nurses ADORE him.  Everyone talks about how cute he is and regardless of if they say that to everyone, it made me feel like they really believed he was the cutest.  We were lucky enough to be able to stay at the JW house again which only houses 4 families at a time.  The hospital that Reid has had all his procedures at is a teaching hospital so while the residents and nurses are being taught I am learning with them.  I really liked this because I think education is so important.  It means that our hospital is up to date with the current research and has knowledgable surgeons to be able to teach future surgeons.  Reid, he was my biggest positive.  Throughout all this crap; surgeries, procedures, needles, catheters, all of it he stills smiles.  He was still such a happy boy.  I am most grateful for this. I think that if he wasn't as happy this would be more difficult.  If I had to see him in pain and not enjoying life I would hate life as well.  But he has no idea that anything is wrong with him.  To him the hospital is just another place where people smile and talk to him.  Sure he gets a needle prick every once in a while but he forgives quickly.  So here we were waiting for surgery # 3 (really 3!)

Walking up to the Pedi floor. 

Reid kept trying to pull out his IV so he had to get a "NO NO" band to keep his hands straight.  They didn't work. 

Tethered Cord surgery and Recovery

After we left the Pre-Op area we went to the waiting room where our family was sitting.  It is so amazing to have a support system who just sits and waits with you.  If you ever know someone who is going through a medical challenge, just sit with them.  Trust me it will mean more than you think.  We sat and we waited.  The surgery was suppose to be 3-4 hours.  Time went by SO SLOW. This was a scary surgery.  Paralysis was a possible complication of this surgery and of course as a parent you have a hard time focusing on anything but the worst case scenario.  3 hours went by…. 4 hours went by… just before 5 hours his number on the screen in the surgical waiting room changed colors to closing.  THANK GOODNESS. They were about done. I felt such a weight lifted when I saw that.  There was still about a 45 minute wait but at least they were done with the scary part.  The surgeon and his physicians assistant (Dr. Duncan and Dan) came out at almost the 6 hour mark and said Reid is in PACU (post anesthesia care unit).  They said his legs are working fine, there was never any loss of nerve function during the surgery.  He did lose more blood than they expected so he had to be given some blood but that was not unexpected.

They had to chip away more of his spine than they thought to cut the tumor out.  He described to us that Reid's nerve endings and the fatty tumor they were attached to looked like a tree with a large tree stump.  Nerve endings are suppose to be free flowing through the spine and hang above the tail bone.  Reid's were attached though to a tumor.  Imagine the tumor in the tree stump and the trunk are his nerves.  Rather than cutting the nerves or cutting the tree off the stump the Dr. decided to take another approach.  By cutting nerves there could have been a ton of damage.  You never want to mess with nerves.  So he chipped away at the tumor (tree stump) and hollowed it out to make it look like a canoe.  That was the nerves were free flowing again.  He chipped it away so much that hopefully it won't re-attach later in life.  Unfortunately this is a possibility.  Tethered cords re-attach to a fatty tumor about 25% of the time.

So while that is a possibility all we were happy about was that Reid wasn't paralyzed.  We went back to the PACU and Reid was asleep.  After just a couple minutes he started to barley wake up and he moved.  I never thought I would be so happy that my child is moving.

After walking upstairs to the PICU all the nurses started getting busy.  They hooked him up to the monitors, moved his folley bags (2 bladders remember) to their proper place, tried to have us use a colostomy bag again to help with healing and keeping his back 100% poop free and to let him rest.  Because the surgery involved opening his spine he had to be on sedation medication so that he would stay flat for 48 hours to let the inner layers of his skin heal up before testing them out and seeing if he starts leaking spinal fluid.  The drugs were strong enough to keep him very very sleepy.  He would wake up to have a bottle and then go back to sleep. 

 I couldn't hold him until Saturday morning after they turned off the sedation drugs.  It was a long 2 days.  During those days Michael and I sat in his PICU room, talked to nurses and watched lots of Netflix.  When Saturday morning rolled around I was very excited to pick him up and try to nurse him again.  I was scared that he would not want to anymore since he had bottles for 2 whole days. 

Saturday morning Michael and I walked over to the PICU and asked if it was time… the nurses said yes.  So at 8am they turned off his sedation drugs.  He was still pretty sleepy so we wanted him to wake up on his own.  After a few hours it was time for him to eat so I woke him up and snuggled with him.  I fed him and he drank for maybe 30 seconds and didn't want anymore.  I didn't want to push it so I just let him sleep.  He was really waking up at this point and was flailing his arms around all over the place. To the point where I put him back in bed because his arms and legs were going crazy.  

He spit up pretty quickly, but I didn't think anything of it.  After this Reid was really fussy so we tried to hold him, but he was still flailing around so we put him down and he would cry.  The nurses thought maybe he was in pain so they gave him tylenol.  His heart rate was pretty high but no one seemed concerned so we didn't think anything of it.  They took out one of his follies to let him start peeing on his when they turned off his medication and he hadn't peed yet.  I tried feeding him again and still he didn't want to eat.  He would have a tiny bit and spit up shortly after. Something was going on.  By the evening Reid still hadn't peed, barely took any liquids and starting actually vomitting.  What was going on with my kiddo?! Increased heart rate, lack of urine, vomitting, no appetite, and very very sweaty.  One of his nurses finally said, this looks like withdrawal.  LIGHT BULB! Yes this was textbook withdrawal.  Poor baby was having a tough time coming off his sedation drugs since they weren't weaned off but just shut off.  So we had to talk to the Dr's.  They Dr's wanted to re-introduce the sedation drugs and then slowly wean him off of them.  I didn't care what they did I just wanted him to be ok.  Michael however was very against this.  He said Reid had already been withdrawing for 12 + hours so why start over, let him finish this.  At this point his resting heart rate was in the 180-200's!  Crazy high.  Michael finally decided that I'm the Mom so I can choose.  I said do it.  Well that afternoon Reid had pulled out his IV and they couldn't get one back in.  So no sedation drugs.  He finally started to act normal again at around 9pm, except he hadn't peed.  Ummm it had been 12 hours since he peed… not even the bladder with the folly still in had produced urine.  So that was our next hurdle.  The nurses tried to re-insert the folly thinking that would allow for urine to escape.  They weren't saying it but they and we thought had lost function of at least 1 bladder.  The nurses and Dr's had such a hard time re-inserting the folly. This is very uncomfortable and Reid was screaming throughout the procedure.  The Dr decided that Reid needed to go under an ultrasound to be able to assist in inserting the folly.  If this didn't work he was going to be transferred to a different hospital because this late at night on a Saturday they couldn't get a hold of a pediatric urologist.  Shut the front door. ON TOP OF ALL THIS Michael was leaving that night.  He started work Monday and the only way he could get home was a friend getting him Saturday.  We didn't expect to still be in the hospital.  I was so scared to be alone at this point.  It was one thing after the other going wrong with him.  I couldn't take it.  I was freaking out.  

The Dr. was finally able to get the folly back in… hooray.  BUT nothing was consistently coming out. ummm isn't that suppose to work like every time?  We went back to the JW house that night and I cried and cried.  I was so scared to deal with these things alone but we didn't have a choice.  Michael had to go to work.  The next morning when I woke up I didn't want to go see Reid.  I didn't want to hear the bad news that was awaiting me.  I just wanted to stay at the JW house where I could pretend nothing was wrong.  But Reid needed his mommy.  So I went.  He still hadn't peed.  Throughout the day we waited.  I thought for sure his kidneys were now failing on top of his bladders no longer working.  IT was a long day of stress.  I was barely eating.  I was like a zombie.  There but not actually present.  I just sat there.  Luckily I have amazing parents who came up to stay with me that day and brought Parker, who is always a delight to see.  I asked my Mom if she could stay with me until Reid went home, I couldn't do this alone.  I realized that too late and was on the verge of a mental breakdown.  Sunday night my Mom and I sat in Reid's room looking for any answers.  None of the weekend Dr's knew why Reid wasn't peeing.  It had been 24 hours since a tiny bit of pee came out.  His nurse (the one who thought he may be withdrawing) thought he would try a few things.  He put a syringe in Reid's folly line and pulled back on the syringe sucking out whatever would come out.  From his right bladder urine came out!  So urine was there, just not dropping into this folly bag.  Then he tried from his left side and nothing.  He pushed some saline in and tried again, no more than the saline.  Ugh why.  Why was this happening and what was wrong with him.  The Dr's said because his anatomy was so different they had no idea what to expect.  As I sat next to Reids crib and silently prayed that he be okay my Mom exclaimed… theres pee in his bag.  !!!!!!!! Sure enough from the left side, the side that was giving us the hardest time, there was more urine in the folly bag.  We waited and even more came out.  I was jumping up and down, my Mom was exclaiming that he peed, I ran out and told his nurse who was just as happy as I was.  He finally peed!! After about 5 minutes of celebrating I told the nurse, I need to leave now and eat.  I hadn't eaten barely anything since Saturday morning and all of a sudden I was starving! 

After being able to release urine, Reid was back to his happy self.  But his follies were still in. Monday morning his urologist came by to check on him and he said pull the follies again one at a time.  If after 12 hours there is no urine do a bladder scan to see if there is urine in his bladder and if he had a significant amount then do a straight cath.  This was basically putting a folly in, but just to release the urine and then take it out.  We were happy to have a plan.  That day I wanted pee.  I wanted pee so bad for my baby!  But none came.  That night the nurses had a tough time cathing him again until our angel of a nurse came in and cathed him on his first try.  He talked so sweetly to Reid before any procedure and Reid loved him.  We learned that he had a neurogenic bladder (what we thought Reid had since he had gone 3 days without peeing himself and it was a known complication of his spinal surgery) and was a fully functioning adult.  This made me so happy.  To know that even if Reid's bladders weren't working it wasn't the end of the world.  He would be okay.  Yes it would suck but it would be okay.  

His neuro team came by on Tuesday and said that the sensors on Reid's nerves never showed any change in function so they thought what Reid had was spinal shock, but to his bladders.  They said hopefully in the next few weeks or months he would be able to empty his bladders on his own.  So I had to learn how to insert a catheter.  Michael was able to come to the JW house after work Tuesday night so that he could learn from our angel nurse Bryan how to cath Reid.  He did it so wonderfully that Reid barely cried.  Unfortunately the other nurses weren't as good.  Not their fault, they didn't have as much experience doing it on such a tiny baby.  Bryan had done it himself for years.  The urologist taught me how to do it and then Bryan watched me a couple times.  This was going to be our new normal, every 3 hours during the day and once during the night.  Wow.  This would be different.  Wednesday morning the nurses said Reid had been discharged by all his Dr's, so after cathing him one last time we were free.  8 days of in the hospital and we were able to go home.  I missed Parker so much and was ready to get into our routine… before his next surgery 7 days later. 

A Family of 4

Being home had it's challenges.  Reid came home drinking pumped milk from a bottle fortified with formula.  We had a home health nurse come over every other day and do weight checks on Reid and check his surgery incision. After being home for 1 week and Reid finally starting to gain weight, we tried nursing.  He did great!! Yea another thing that I was worried about can be checked off my list. Then there was him pooping… out onto his stomach.  This was a continual struggle, but after a while it was easy. He was constantly leaking through his diapers and I would have to figure out how to try and prevent that.  Whether that was moving up a diaper size or adding a second diaper inside of his diaper, whatever worked.  Then there was the diaper rash.  At the time I thought it was bad because it was on his tummy… little did I know the diaper rash we would eventually be dealing with.

Reid as an infant was exhausting.  He was a pretty good baby, had the typical baby growth spurts and basically cried for 3 days with each one.  He hated (and still does) sleep.  He and I hang out a lot at night together.  But other than this he was a good baby. I could take him wherever, butI chose not to.  If he were to get sick during those first 3 months it may delay his surgeries and after coordinating with all the different surgeons he did not need this.  

As the months went on and my newborn turned into just a baby I really enjoyed this.  I felt like I had forgotten that inside of my little man there was a lot wrong with him.  Since returning from the NICU I had not googled tethered spinal cord.  I was terrified.  I didn't want to know about the surgery and how dangerous spinal surgery was.  I didn't want to know how rare it was or the number of kids who had become paralyzed during surgery.  About 2 weeks before his surgery I finally decided I needed to know.  I needed to have some sort of idea of what was about to happen.  So I googled it.  Tethered Spinal Cord Surgery 3 month old baby.  WOW.  I was shocked.  This wasn't as rare as I thought it was.  And almost all cases were very successful.  I was so relieved. The one thing I did notice was that the youngest child I had seen via google have the surgery was 9 months old… and Reid would be only 3.  That was scary.  But our surgeon was very confident in what he was doing and that was a comfort to us.  

When the time came for his surgery my anxiety was getting stronger and stronger.  I finally had to seek some professional help just to be able to sleep at night (when Reid was sleeping).  It helped a little but anyone who knows what it is like to have a child who is going through surgeries knows that nothing will help take the worry away.  It is debilitating.  It made me want to shut down and run away and wish I didn't have to know what this amount of worry was.  But I didn't.  I kept going.  I kept waking up 4-5 times a night and snuggling a little man and putting a pacifier back in his mouth… for the 4th time in 3 hours.  

The night before his surgery was tough.  I knew that I would be saying goodbye to Parker and not knowing when I would go home again.  We were told that most cases went home after 3 days but it wasn't a for sure.  His surgery was scheduled for a Wednesday with pre-op appt on Tuesday.  So I thought home by Saturday would be great! We were blessed again to be able to stay at the JW house from the night prior to surgery until… we went home. It is such a wonderful place to be able to leave the hospital and unwind.  The fact that they provide meals too is a huge plus.  We had Reid with us that first night and he slept like normal… waking up 3 times just for the pacifier.  We got up in the morning and walked our little guy over to the surgery floor and checked in.  They let us go back to the pre-op area and wait.  This was scary.  the pre-op nurses were not impressing us.  They were shocked to see that Reid had stomas.  Um aren't they suppose to know a little something about their patient.  They had no idea what to do.  They didn't know how to keep his bag on because we weren't using a bag.  They ended up putting on a urine bag over his stoma that leaked immediately because it was a urine bag.  When it was time for them to leave with Reid it was hard.  Luckily for me my husband was holding him when they did their "time out" and walked away.  We handed Reid to the nurse and watched them leave. We lost it.  We stayed in his pre-op room and cried and prayed for our little guy.  We didn't know what our future would be like after this surgery. Would he be able to walk?  Would he be able to have a normal future?  Would their be complications?  We had no idea. 

Post Surgery #1 and Becoming a NICU Mom

After Reid was taken out of the NICU for surgery we walked down to the 2nd floor surgery area and waited.  It was an empty waiting room so we gathered all the chairs to barricade Parker in and waited, waited, waited.

We had no idea how long the surgery was expected to be.  I didn't want to leave though.  An hour went by, 2 hours, 3 hours, 4 hours… seriously? so Michael and I decided to just walk to the NICU and see if they had hear anything.  Much to our surprise REID WAS THERE! He had just been walked in and they weren't ready for us but we were there.  One by one all of our family (my parents, my sister Sarah, Michael's Uncles Tim and Bryan) all go to see Reid for a very short time.  As the last visitor left the NICU and I headed back in Michael stopped me right before Reid's giraffe and looked terrified.  He said that Reid had stopped breathing but that they got him breathing again.

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what?
The Dr's were rushing around him and monitors were screaming at me.  I couldn't see him because they were all blocking him but his nurse came over and said he was okay.  Sometimes with little babies morphine makes them so sleepy they forget to breathe.  It wasn't uncommon and they weren't worried about it.  So we sat down.  We watched Reid, watched the monitors and waited.  About 20 minutes later I watched his breath counts and oxygen levels fluctuate and then go down, down, down.  His nurse spoke loudly to Reid to wake up and was rubbing his chest with her knuckles.  He started to turn blue almost instantly.  He finally took a breathe and pinked up right away.  Wow.  That was scary.  I watched my child stop breathing.  I watched his nurse look scared at what happened.  I was terrified.  The Dr. decided to put Reid on room level oxygen.  21% only, the nurse described the breathing tube as riding a bicycle and gavin the air rush at your face.  She said the air will remind him to breath by tickling his nose.  So we sat and watched the monitor.  The oxygen level didn't change much but his breathes per minute did.  It was ranging from 30-12.  The monitors would beep if it went below 15 so it beeped a few times but the nurse said he's okay, babies sometimes just hold their breath and it's okay.  We kept staring.  Hours went by and we had to go pack up our stuff and move to the JW House.  I was shaking when we left.  I was so scared about something happening when I wasn't there that I couldn't speak.  Getting back to the house the best thing possible was waiting for me. Parker.  He made me smile and laugh and that made me mentally able to keep moving.
That night I called the NICU 3 times in the middle of the night to check on Reid's breathing.  They said he was doing great.  (deep breaths) I was able to relax for a short while.  The next morning Michael and I got up and started making our walk to the hospital NICU.  That walk is terrifying.  All we could think is what will today bring, what will he look like when we get there, what will happen today, what oxygen level will he be on, will we get news, when will the surgeon come by, what will happen, when will we go home, and the repeating question, WHY?

Luckily where Reid's pod was when I first walked into the NICU (before getting buzzed in, washing our hands, calling his pod area and having a nurse let us in) I could see him.  I could see if there was an oxygen machine there and what the number on it was.  That was what I needed to know before I spoke with his nurses.  Before my knees could possibly buckle beneath me I needed to soak this information in myself and be prepared for what they said.  Reid was on oxygen for a total of 2.5 days and it never went higher than room oxygen.

I felt like every time I saw Reid he would have a new wire on him, or it would be out only to return the next day. 

Unfortunately I do not remember much of the rest of our 2 week stay in the NICU.  When I think back on that time I remember little moments.  

I remember when I first walked in and he didn't have the oxygen tube.

I remember walking in and seeing him awake more and more.

I remember sitting in the home of the JW house and watching Parker play with my Mom.

I remember when Reid needed to be sedated for an MRI because his last scan was blurry and the surgeon thought that she saw something on his spine.

I remember continuing to hate the walk over to the hospital.  Every day was a new complication.

I remember how we struggled between getting a CT scan for such a small baby or another MRI. 

I remember we decided to do both.  

I remember Dr. Sullivan confirming our fears, Reid had a tethered spinal cord.  

I remember that with all of his complications no one knew what to expect.

I remember that a nurse had printed a medical article about a child with 2 of Reid's anomalies (I don't remember which ones).  

I remember reading that article.  The child had spina Bfida.  I remember being not being able to breath as I continued to read the article. I remember in the article it talked about how rare 2 of these anomalies together were (and my child had more than those 2).  I remember when I got to the end of the article there was a blurb. *Further research on child ceased due to child's death. 

My heart stopped momentarily.  I felt like I couldn't move.  I knew I was being absolutely still but it felt like I was shaking uncontrollably and sobbing.  

I remember that Dr. Sullivan luckily came by soon after reading that and I questioned her about Spina Bfida and she said no Reid did not have this.  I asked about life expectancy.  She said that nothing Reid had was life threatening. 

I remember breathing again.

I remember our very first "shift" in the NICU where we didn't leave with more bad news. It was so refreshing.  It felt like hey, maybe we can handle this.  Maybe our world isn't going to end.  

I remember our "pow wow" with all of Reid's specialists, his general pediatric surgeon, neuro surgeon, neuro surgeon's physicians assistant and his pediatric urologist. We all sat in the lobby of the NICU in the tiny toddler chairs and talked about Reid's anomalies. 

From that meeting we knew that Reid would have a minimum of 3 more surgeries over the next 6 months.  He would need his spinal cord untethered, his double colon to be joined together to make one large colon and a fourth surgery to take his colostomy down.  This would hopefully be his final surgery.  None of his surgeons or anyone they had spoken to had encountered a person with Reid's exact anatomy so they weren't exactly sure how to handle him.  So they decided to take it one complication at a time and correct them alone rather than together.  As far as Reid's urology is concerned at that point everything was working perfectly so no need to do surgery at this point for that. Possibly in the future but he would be getting scans every 6 months to check the function of his bladders and kidneys.  

We had a plan.  

In 6 short months my boy would be pretty much just like any other kid.  No colostomy bags, no spinal cord injury weighing on my mind, no misconnections inside of him. 

My child would be "normal".  

We were elated.  

Now when were we going to go home?

Next hurdle!  Reid had gained almost a lb in fluid from his surgery and sedation and had started loosing it.  When it was getting close to us going home we discussed his weight.  He wasn't eating much on his own because he had a feeding tube. He rarely nursed and mostly got pumped milk from a bottle but wasn't taking much in.  When his Dr's all cleared him from their speciality the pediatrician decided to let us do the "room in" night.  So back to our bunker we went but this time with our baby.  It was a version of the first night I wanted with my baby.  He was in the little plastic bed next to me and my alarm clock was going off every 3 hours.  I tried nursing him, but usually had to end with a bottle.  Even then he would fall asleep and difficult to wake.  I had a feeling that he hadn't eaten much that night.  At 8am his nurse came and took him back to the NICU and weighed him.  He had lost .2lbs we wouldn't be going home.  So back to the NICU he went and we waited to talk with Dr's. At this point he was at his birth weight so I didn't understand what the problem was, but they explained that he isn't taking in enough to gain any weight and had been loosing weight for 3 days in a row. I think that they were too much in their NICU mentality. They were used to tiny preemies where weight loss in huge.  Well my child was almost 9 lbs… it was okay that he was back at his birth weight.  We discussed what to do.  The Dr. decided to give it another day.  The next morning, down another .2 lbs.  This was the first time he was below birth weight.  This was not happening.  After all he had been through after all we had been through him eating was keeping us here.  So the feeding tube went back in.  They were feeding him that way and I stopped nursing.  He was still getting pumped milk but just was falling asleep.  FRUSTRATED!!! So we discussed what to do, his Dr wanted to keep him there and on a feeding tube.  But we were done, we wanted to go home.  I made a point to them that I like to think is what sent us home.  I said he is loosing weight… an issue that if need be can be taken care of at his hospital closer to home (we were 2 hours away).  Another child who needed this high level of care could be in his place while he went back to his home hospital.  So they discussed discharging him and having him re-admitted on a failure to thrive diagnosis.  Seriously.. my 9 lb child failure to thrive? Whatever was going to get my back to my toddler who had left the day before.  Then the Dr. came back and said "You wanna go home?" Um is that even a question!!! YES! So after 12 long hard days in the NICU we packed up our little boy, bundled him in his car seat, got our complimentary beanie from the hospital, and made the 2 hour drive home.  We were ready to start our life as a family of 4. 

As we were getting ready to leave the JW house that had become our home over the last 2 weeks a package arrived for us.  It was a box that was from a town I didn't recognize so we were curious to who it could be from.  When I opened the box I saw a care package with candy, gum, shampoos and conditioners, snacks, books for Parker, beanies for Reid, and a note.  This amazing package was sent to me from a group of amazing women I met over the internet (yup I'm that Mom and proud to be!).  These women pulled their money together and gifted my family so many wonderful things.  As I read to note to my husband I choked up and starting crying thinking about how special this made me feel.  These ladies who I have never meet care that much about my family and I that they did this.  It was a beautiful gesture and I so dearly hope to meet them all one day and give them a hug to thank them.  

Blur… NICU part 1 Colostomy Surgery

While in the maternity ward staring at my beautiful baby boy wrapped up in his blanket and breathing peacefully a Dr and nurse came in to look at Reid.  The Dr. informed me that they sent pictures of his anus to a specialist in Santa Clara because he may require surgery, and that this surgery could be right away.  Of course not I thought, that wouldn't happen to my baby.  It will be fine.  About 15 minutes later as I tried to nurse Reid again the Dr. returned and said that the specialist had contacted her and that she wanted to see Reid herself… in Santa Clara. Starting at this point things became blurry.  I think I have mentally blocked out a lot of details but I do remember that the Dr. told me Reid needed to be observed in the NICU in Modesto until the ambulance came to transport him.  They needed to start an IV on him and were taking him immediately.  I was so numb I just agreed without really saying goodbye to him.  I looked at my husband and I could see the color drain from his face and fear just completely wash over him.  I told him to go to the NICU and that as soon as I could (remember I gave birth 3.5 hours ago!) I would go to the NICU.  So off they went and the nurse tried to help me get up and go to the bathroom to clean myself up before heading to the NICU.  I asked if I would be able to join Reid on the ambulance ride and they said no.  They said that if I wanted to go with him to Santa Clara I had to be discharged from Modesto and then just go to Santa Clara as a parent with no further care after my delivery.  The Dr's agreed that it would be okay since it was my second child and I knew what to expect.  I had to start taking medication that would make me contract to help with bleeding but I didn't care.  As long as I could be with Reid as soon as possible.  I made my way down to the NICU in Modesto and Michael met me at the door and said that Reid's bottom looked really weird and that they think he has 2 anus's.  They were having a lot of trouble getting an IV and were trying for the 4th time as I walked in and heard him screaming.  At this point I still had not seen what Reid's entire body and anomalies looked like, I didn't even know everything that was going on with him.  It wasn't that they weren't telling me, but they were too busy caring for Reid.  They finally got an IV in his umbilical line and he calmed down.  I was so tired at this point and all we were doing was waiting for the ambulance so I decided to go back to my room pump and try to close my eyes.  I asked Michael to stay with Reid, I didn't want him alone.  He agreed without any problem and kissed me goodbye.  I was able to pump and close my eyes for about 15 minutes before Michael came back up and said that the ambulance was there ready to take Reid away.  This was so hard.  As I sit here and type this tears are still welting up in my eyes remembering how it felt to have complete strangers take my new baby away from me.  My new baby that I had yet to bond a lot with, he barely had seen me in between sleeps. But I knew that this is what was best for him, he needed this.  Something was wrong with him that I couldn't fix so he needed to go where he could be fixed.  I hated this.  I hated this so much.  As they wheeled him away I broke down.  Michael and I just cried in each other's arms, a cry that crushes your whole body into pudding.  As soon as we could pick ourselves up off the bed and I was able to walk around we left the hospital.  We didn't even stop at home we just went straight to Santa Clara.  I slept part of the ride there which I needed after delivering a large baby just hours before.  

When we got to Santa Clara I remember walking into the ER (late at night it was the only way to get into the hospital) and shaking.  I was uncontrollably shaking and I thought maybe I was loosing a lot of blood.  I asked them if I could have a wheel chair and they wheeled me to the elevator and we headed up to the 3rd floor looking for the NICU. It was a little after midnight at this point and there wasn't a nurse to let us in the NICU.  We had no idea what the process was of getting into the NICU so we just started banging on doors when we saw a person walk by.  Eventually someone let us in and they were so confused.  I just kept saying I want to see my son, he was brought here from Modesto just a little while ago.  It was like I was speaking another language and that someone had finally found me who spoke my language.  I remember the Dr. from that first night.  He was the first one to try and figure things out for us. He was young, looked like he had just graduated.  He ushered us through the halls and into the pod where Reid was.  The nurses were still wiring him up to all the monitors and they said he did good on the ride over.  We sat down near him and I was still freezing cold.  We stayed for about 45 minutes and just stared at him and watched the nurses poke and prod at him.  This was so novel to us.  I didn't know anyone close to me who had a child in the NICU.  I had no idea what this was like. 

At this point we didn't know what was going to happen 10 minutes from then and because of this we didn't know where we were going to sleep or if we were going to sleep.  The Dr. informed us that the NICU had a parent's room in suite that was used in emergency situations and for parents to have one night with their NICU child before being allowed to go home and that we were going to be able to stay there.  I was so thankful.  I was exhausted.  We said goodnight to Reid and walked around the corner of the NICU to our bunker.  It was a tiny room with a bathroom and a dresser.  There was a TV… that had no working channels.  While we were thankful to have a place to put my hospital bags that were suppose to be used in Modesto's maternity ward we didn't love it.  The Dr. that first night told us that rounds were every morning at 8am and that parents were encouraged to be involved in rounds.  So at 8am we were right there by Reid's side waiting to see what "rounds" even meant.  I was so concerned with how Reid's night went since I wasn't there.  That was suppose to be my job.  I was suppose to be up all night trying to nurse a newborn and change meconium diapers.  I wanted that.  I didn't want to be in our bunker room pumping every 3 hours.  I wanted to be snuggling my baby.  

Rounds at this point didn't mean much because the surgeon hadn't evaluated him yet.  She was going to be coming by sometime that afternoon depending on other urgent cases.  I remember during that first morning shift when we had no idea of how to act or what to do in the NICU we had the sweetest nurse we could have asked for.  I could tell immediately that she cared for my child and I needed that.  I needed to know that when I wasn't there someone else was that could comfort him if needed.  Her name was Lillianna.  She was a tiny little thing who looked 18 but we later found out she was 35!  As the day went on and Reid was evaluated by numerous people no one had told us anything about him yet.  They didn't know.  It was a Friday and any images that were taken of him probably wouldn't be seen for a few days. ….. We would be here for a few days??? 

That afternoon Michael's Uncle Tim and his partner Bryan took us out to lunch.  I am so grateful to them for everything they have done for us and especially Michael.  Having that small comic relief during this chaotic time was exactly what he (and I) needed.  When we got back from lunch we learned that we had missed the surgeon and that she wanted to talk to us the next day about Reid's surgery and when it would occur.  

This was Friday afternoon.  After almost 24 hours I was finally able to hold my baby.  I was terrified.  He had an umbilical IV, 3 wires attached to his chest to measure his oxygen, heart rate, and breathes taken.  He had another cord coming from his foot and one in his mouth that went to his stomach and sucked out any stomach acid.  I couldn't really tell what he looked like because of the tape and wires but I knew I loved holding him.  I didn't want to let go of him. 

But unfortunately we learned some rules about the NICU from the social worker and we weren't allowed to be there during rounds and we were encouraged to get off the hospital campus and try to relax.  So during shift change we went on a tour of a home that was in the parking lot called the JW House.  We were hoping to be able to stay at this house and leave the bunker.  It was similar to a Ronald McDonald home except amazingly beautiful.  To be completely honest I don't remember the tour of the home.  I don't remember meeting the house manager April, I don't remember looking at the rooms, I don't remember being wheeled over there.  The next thing I remember from Reid's NICU stay was meeting his surgeon Friday evening.  Dr. Kerry Sullivan.  She was Reid's angel sent to help all of us.  She sat down with us and explained that Reid was a very complicated little boy.  She said she wasn't quite sure of everything that was different about Reid and that she wanted to explore him a little with some CT scans/MRI's/and exploratory surgery.  She showed us on Reid everything she was talking about.  This was it.  This was the first time I was going to see these anomalies that Reid had.  I saw all of it.  I saw that Reid had 2 anus's.  I saw that one of his anus's was an imperforated anus.  I saw that he had a large purple birth mark (hemangioma) that covered his butt and back and went down his leg.  I just looking.  I kept looking at this baby boy and didn't understand why something was wrong with him.  Why him?  Why my baby?  Why me?  Why was this happening.  I remember Dr. Sullivan was saying that he would need surgery tomorrow but she didn't know what time until the next day depending on emergency surgeries (we later found out that Dr. Sullivan is a crazy busy person) were.  I informed my parents and they said they wanted to come tomorrow morning.  

The next morning as I laid in our bunker I heard a knock on the door and saw my perfect little toddler Parker.  It wasn't until then that I realized how much I missed him! I missed his smile and it helped me so much.  Just as they showed up the nurses called and said Dr. Sullivan was with Reid and wanted to talk with us.  So Michael and I hurried over there and she informed us that Reid was going into surgery now.  They kept talking and talking and I kept nodding but inside I was just looking at my baby and still asking why. This wasn't fair. I didn't want him to have surgery.  It was scary for a 2 day old to have surgery.  They had to find an anesthesiologist that would agree to do the surgery on such a young baby which was also scary.  They were getting ready to walk away with Reid and Michael asked if we could have a moment alone with him.  We leaned over his giraffe machine where he laid and "hugged" his machine.  Michael said I think we should say a prayer.  He asked God to be with Reid and to protect him and to stay with him whenever we couldn't be with him.  I felt better.  I am not a super religious person, but just hearing Michael ask God for this made me feel like I was giving him the control.  I didn't need to hold it together anymore because it was in God's hands.  He would take care of my son.  We stood up and our favorite nurse told us she would pray for Reid and I lost it.  Someone I barely knew for 1 day was taking the time out of her day and pray for my child.  We cleaned ourselves up and left the NICU back to our bunker.    

Genetics and Labor

2 days after my anatomy scan I got a call from a genetics counselor saying that the ultrasound revealed something didn't look right about Reid's bladder.  They thought it may be a condition that I can't even remember now, and that the condition wasn't that serious.  We met with a geneticist and did another ultrasound and he said that the heart, lungs, kidneys, and spine looked good.  That was a relief.  The bladder though he wasn't sure about… it didn't look like the condition they mentioned before but something was definitely different about it.  He did an all over body scan and also mentioned that something about his anus looked odd, but only sometimes.  He said maybe an imperforated anus maybe not.  He explained what surgery would be required if it was that but he wasn't sure.  I had to do more ultrasounds every month with this Dr who we didn't really like. At the next ultrasound he said that he had sent Reid's images to a few other Dr's and they concluded he had a duplicated bladder.  He had 2 bladders that were functioning on their own but connected side by side.  He also said that Reid had a single vessel umbilical cord but that was no big deal.  His other concern was that he may have hypospadias which is where his urethra is misplaced.  It wasn't a guarantee but he said based on the shape of Reid'd penis he thought maybe.  My anxiety that I was having with Reid's pregnancy just got worse.  We knew that at some point they would need to do a surgery to correct Reid's hypospadias and possibly more than 1 but it could wait until he was about 6 months old.  It was a fairly rare condition, we were talking to a Dr. in Roseville about it and he had only had 3 cases of hypospadias in his career. So this was something we had to swallow, but all his Dr's said I could still have a normal delivery in Modesto like with Parker.  As time came closer to Reid's due date I started having anxiety attacks.  Michael was about to fly to Ohio for a family wedding (that I was suppose to go to and we had lost $700 on the plane ticket!) and at the last minute (the day he was suppose to fly out) he decided to stay home because I felt that things with Reid weren't right and that I could deliver early.  He was going to be returning when I was 36 weeks… that's how far along I was when I had Parker.  At 35 weeks my Dr. took me off of work because of my anxiety attacks and the fact that they were getting so bad. Then at 38 weeks pregnant the same way it did with Parker, my water broke.  

There is no excitement in the world quite like knowing your water has broken.  It means your life is about to change… not in 9 months it's going to change but in a few hours.  My labor with Reid went a little quicker than Parker's and a lot more painful!  I had a birth photographer present because Michael was going to deliver Reid.  It was such a happy day for me, everyone I loved most was in the room including my Dad.  I was pushing and pushing and pushing, Michael was all suited up and ready to go.  

Then the midwife said change of plans, call the Dr.  All of a sudden people were scrambling and there were beeps and sirens.  The midwife got in my face and said I needed to get Reid out with this push.  I pushed and screamed as hard as I could and did it.  He was out.  8 lbs 10 oz 21.5 in long he was gorgeous and plump. 

They laid him on me for 1 maybe 2 seconds and I could see his shoulders and back only. Then they took him away.  He hadn't cried yet.  It wasn't too long and he started crying, Michael was over with him look at him and I asked about the hypospadias.  This was when we were going to find out what Reid's future in the medical world would be like.  Michael came back over and said Reid had a few more anomalies that we weren't expecting but that everything was okay.  He didn't have hypospadias but he had something else… he didn't know what it was.  An indention in his butt, like a second hole but it was covered by a skin flap.  It's hard to picture in your mind but you will have to, for Reid's personal privacy I won't be sharing pics of his bottom.  I couldn't picture it and by the time they handed him to me he was in a diaper and wrapped up.  I asked them if I could nurse him and they said they would prefer no but it I wanted to it was okay.  I had a tough time nursing Parker so I was excited to have a second chance with Reid.  I nursed him about an hour after he was born and he did okay.  While still in the labor room the neonatologist came over and took a bunch of pictures of him, I wasn't sure why.  We went over to the maternity side of the hospital and I was on cloud 9.  He was born at 1:59 pm and took his first breath at 2:00 pm.  At 4:30 we were taken to the maternity ward and by 5:15 I had a nurse come in and that was the start of the hardest 2 weeks of my life.