Out of the Woods

Finally Able to Break My Silence.

Six days before my planned c-section for Tucker, I found out my daughter may have a brain tumor.

At around 10 months old, my daughter's pediatrician recommended that I go and see a pediatric eye doctor to check my daughter's left eye for possible far-sightedness.  No big deal.  I set the appointment, and we went.  Yes, her left eye was significantly far-sighted, but not enough to warrant glasses at this young of age.  I just needed to watch for her for possible crossing (a possibility which didn't happen, thankfully), and bring her back in every 6 months for check-ups.  

Well, we did just that.  On her fourth concurrent check-up Livia, being almost three years of age at this point, was finally able to complete a full eye exam (younger than three, and it's super difficult as many parents can imagine).  It seemed routine enough.  At the end of the appointment, though, the doctor seemed a bit more serious than usual.  I thought, glasses time!  

I thought wrong.

The doctor said that she could finally see the back of Livia's eyes, and when she did, the optic nerve connection seemed fuzzy.  In her words, the optic nerve connection is supposed to be clean, smooth, and sharp, but Livia's were scalloped and a bit corrugated.  Enough so, that she believed "something" was putting pressure on her optic nerve in her brain, thus causing this appearance.  Tears welled up.  Of course I knew what this "something" was she was referring to -- a possible tumor.  The doctor never used the word, in fact, it was like she was purposefully avoiding it.  She said that Livia would need an MRI under general anesthetic to determine if there was a mass.  Tears flowed at this point.  Here I was 9 months pregnant, ready to give birth next week, and I am hearing that my daughter may have a brain tumor.

I kept the horrible news to myself.  I could barely even look my husband in the eye, let alone discuss what this possibly meant for our family.  Thoughts of the Ronald McDonald house and various children's hospitals swarmed my head.  Friends and family were texting me about my upcoming delivery, and all I could think about was Livia.  I was so scared.  I was so angry.  Why now?  In fact, why ever?  

Because of the necessary insurance pre-authorization for the MRI, Livia's appointment was scheduled for exactly one week after my c-section.  I had only been home with my new baby for 2 days before having to go back to the very same hospital for my daughter.  After going over the risks, benefits, and alternatives to treatment, and after we basically signed her life away, they gave her some elixir that made her loopy enough to put the IV in without resistance, and took her back.  We sat in the waiting room for 2 hours trying not to think about what the MRI was revealing.  

Finally, the anesthesiologist walked by, and gave us a thumbs up. He said that there was no mass that he could see, but that we needed to wait for the official results from our pediatrician.  We went home praying for the best. 

The pediatrician called about two hours later, and said that there was good news and bad news.  Good news?  No tumor (thank You, thank You, thank You).  Bad news?  There is so much fluid in her brain, that it is compressing the optic nerve and the tissue around her pituitary gland.  So much so, that we now needed to get Livia a lumbar puncture (aka spinal tap), once again under anesthetic, and within the next week.  

Yes, I was so ridiculously grateful that there was no tumor.  But I was so angry that I needed to do further testing.  Angry because my daughter had to go through so much in such a short amount of time, and angry because I couldn't enjoy this brand new time with my week old son.  Tears flowed, again.  And thankfully my mother was there to wipe them.  She said that I would get through this.  It was just another obstacle.  I had to be strong -- for Livia. 

A week later, we were back at the same hospital.  This time in the PICU.  And again after reviewing the RBAs and signing her life away, she was given the same elixir, and an IV was put in.  My husband and I left the room for another 2 hours, and waited.  Just waited.  

Finally, the nurse came and retrieved us.  The PICU doctor said that her spinal pressure was significantly high -- not critically -- but significantly.  We would have to see the pediatric neurologist and determine the next step.  He thought, most likely, that Livia would need to take medication and have repeat testing again within the year.  My pediatrician called us, once again, later that day.   He gave us the referral for the neurologist; I called, setting up an appointment for the very next day.  

Next day.  Again, I packed up my newborn and my (now) three year old, and ventured, this time, across the street from the hospital, to the neurologist's office.  Thankfully, this doctor had a wicked sense of dry humor, and made me crack some smiles.  Yes, Livia would need medication, twice a day for 6 months, and yes, she would need repeat testing in another six months to see if the medication has helped the fluid pressure.  Her diagnosis? Idiopathic Intracranial Hypertension.  

I still have yet to Google it.  I still am too afraid.  But, I am so grateful.  My load got a little lighter.  I could breathe a little easier. 

Until a week later...

Tucker, like Livia and myself, was born jaundiced.  No big deal, I thought.  Sooooo many babies are born jaundiced.  A little sunlight, and a little time, and boom -- the yellow goes away.  Or, so I thought.

At Tucker's first four week appointment, he was still yellow. Significantly yellow.  The pediatrician -- the same pediatrician for Livia -- told me that I needed to get Tucker's bilirubin ("bili") level tested.  No problem, I thought.  The office has a children's lab adjoined to the building.  It would be easy.  But, as I was leaving, the Doc told me that I would need to get a lab slip for the hospital.  The hospital??! I looked at him, and laughed.  I was NOT going back to the hospital that day.  WHY!?!  He wanted a STAT order, and only a hospital could provide those fast results.  But, I needed a friggin' break.  I could not, would not go.  Although a bit peeved, he understood, but said that I needed to take him in the morning the next day.  

Next day.  I drove Livia to preschool, and immediately after took Tucker to the same hospital where I delivered; the same hospital for Livia's MRI and spinal tap.  The staff actually recognized me. 

I registered Tucker, and we were sent back.  Tucker had his labs taken -- a little squeezing on the foot -- no big deal, and I drove home.  I waited for the STAT results.  The Doc didn't call until the afternoon -- which, I thought, may be a good sign.  If it was SUPER bad, wouldn't he call right away?  I guess not when the Doc is waiting to talk to different specialists...

Tucker's indirect bili was high -- indirect, normally just caused by some chemical in my breastmilk, and is considered no big deal. However, his direct bili was significantly high -- and a direct bili should always be ZERO (as close to as possible).  This was not good.  The Doc briefed me on these possible -- treatable -- genetics disorders that may cause his indirect to be so high.  But, the direct should not be elevated at all.  It could be something bad -- so bad that he wouldn't even tell me until further testing was done.

Are you serious??  I just had major abdominal surgery, we just ruled out a brain tumor for my daughter a couple weeks ago, and now my son's health is in danger?  

It gets worse.

The Doc said that, per the pediatric GI doctor's direct orders, I would have to completely stop breastfeeding Tucker for 3 full days.  HAAAAAAAAAAAAAAAA HAAAAAAAAAAAAAAA.   I hadn't even broken out my breast pump yet.  Tucker has never even sucked on a bottle -- in fact, I hadn't taken out any of the new bottles that I received from my showers, and I didn't own any formula.  I was pissed, I was angry, I was sad, and, most of all, I was scared.  Our pediatrician is a strong proponent of breastfeeding.  He would never ask that I give Tucker formula unless he needed to. 

So, there it was.  I had to pump every 2 hours for 3 days in a row, and give my 4 week old baby formula.  My nipples were purple and about 3x the size by the end of the weekend.  But I did it (with a little leeway in between -- I did breastfeed him a little bit, emotionally, I needed to).  

The following Monday, I took Livia to preschool and Tucker to the hospital to get re-tested.  And waited.  And waited.  Again, the Doc didn't call until the afternoon.  Good and bad news again.  Tucker's indirect bili count went down (duh, I stopped breastfeeding), but his direct count went up -- even higher.  Significantly higher.  This was not good.  The Doc now started to get serious.  I needed to take Tucker in for an ultrasound to see if he was born without a gallbladder.  I could. not. believe. the. words. coming. out. of. his. mouth.  Born without a gallbladder???  The doc said that he may have "this really bad thing" and he needed to know if he was born without a gallbladder, and if so, Tucker would need immediate surgery to correct the digestive tract, and would need a liver implant in the future...and that's if things went well.  

I was nauseous.  I literally was holding back puke.  And so was the Doc.  He told me that he couldn't believe how much bad news I've received within the past two months.  He felt sick.  Even he didn't know how to steer me.  He wanted the ultrasound done, but was hesitant in putting in the order because of Tucker's size.  Sometimes the technician can't see a gallbladder even if it's there just due to the size of the patient.  Oh, and did I mention that in order to see a gallbladder, the patient has to starve...for three hours.  Not only did I have to give my newborn formula the past three days, but now they were asking me to stop breastfeeding for three hours.  A newborn.  Are you freaking serious?

The Doc literally left it up to my husband and I to decide if we wanted to do the ultrasound.  My husband is a yes man.  So, we did it.  That day.  Three hours after hearing the lab results.  Here we go again.  Back to the same hospital.  Back for testing.

But, finally a rainbow.  The technician was able to see a gallbladder.  And, Tucker's liver *appeared* healthy.  FINALLY, some good news.  

The pediatrician's office called us even before we got home.  Tucker looked within normal limits.  Gallbladder present.  Healthy liver present.  But, we still needed to meet with the pediatric GI doctor in order to tell us what to expect.

It was probably the scariest doctor's visit of my life -- even worse than Livia's.  The GI doctor informed us that even though the ultrasound appears normal, Tucker may need a liver transplant due to his bili numbers.  My ears literally went numb as the doctor referred to his anatomy diagram trying to explain why Tucker's bili numbers look the way they do.  I couldn't hear him.  I watched as his mouth spoke words, but they made no sound.  I felt dead inside.  The only thing I kept hearing was the doctor repeating how much he could tell I loved my child.

We needed to continue to check his bili levels until they either increased -- which we would then be sent to Stanford for a liver biopsy, or they *hopefully* decreased.

Next week.  Back to Good Samaritan Hospital.  In fact, to abridge this story, we went back to Good Samaritan Hospital almost every week until Tucker was 4.5 months old.  We went so many times, that staff knew us, technicians knew us, and even returning patients recognized us.  As the weeks went by, Tucker's numbers finally started to drop.  Slowly, and thank God, steadily.

Finally, at 4.5 months, Tucker was cleared.  

I could breath.

We were out of the woods.  

So where do we go from here?  Livia needs a repeat spinal tap at the end of 2015, and as for Tucker, he was diagnosed with Gilbert's Syndrome, a harmless liver condition (which I still have yet to Google).  

Nobody ever thinks about the potential scary times when you think about having children.  You always think about the milestones, the smiles, the laughter.  Every now and then, you hear a gut-wrenching story of a child being sick, and it churns your stomach.  I can only be so thankful for the prayers and the outcome for my own children.  However, knowing how it feels to wait for lab results -- over and over again -- I can only send prayers every day to those parents going through the same thing at this very moment.  I pray so hard for those families.  

I am so undeniably thankful to be out of the woods.