I "Gotchu" Buddy

While we were off at the children's hospital with Mia unexpectedly, our other children shuffled a bit among family.  Mike was home for a day, but then took Xavier to boys' camp, and so the other 2 went to Lauren and Lance's to stay.  

Lauren sent this picture to me...after a long several days you can see Zayden just leaning into his buddy needing all his support.

Best friends.

This Was Not the Life I Chose... {Chronicling Ameliya}

Mia dealt with back to back UTI's this past winter, for months and months.  We'd get rid of one, feel victorious, and then fall so hard again.  Her fevers would spike, she would get nauseous, and I would crumble on the inside.  There was a person in my life years ago who made me feel responsible for every illness and health related issue that came the way of me or my children.  While I get it, because I am responsible and I do have power over keeping my children healthy and supplementing to make up the gaps, I have struggled greatly with real, extreme, crippling guilt whenever one of my kids gets sick.  What could I have done differently?  How did I let this happen?  How can I make it stop?  So, this winter, when Mia dealt with sickness that would not end, I became a shell of the person I used to be.  I. felt. so. guilty.  I used my herbs, my oils, modern medicine, my prayers.  Why wouldn't it stop?  I had God on my side, didn't I? Why didn't he care?  It was a long several months.  

Once we realized this was a pattern, our beloved family nurse practitioner sent us to a urologist.

first ultrasound, 5.17.18

Initial urology appt.  5.29.18

At the urology appointment, Mia had a clean urine analysis.  She was currently off all meds.  We met with a urology NP, who reviewed Mia's file and ultrasound, and decided that we would try a course of prophylactive antibiotic and see if Mia out grew whatever was going on - perhaps reflux - before going through any further tests or surgery.  We left that day feeling good about having a plan.

Cold Stone treat after the appt!

The local pharmacy had trouble fulfilling our med order, and so, by Wednesday, we still hadn't gotten it.  Thursday morning Ameliya awoke feeling yucky.  Again.  I knew by now what it meant when she said her back hurt, her tummy hurt, and her head hurt.  My heart started pounding.  The familiar 'at fault' feeling of sickness coming.  I started making calls.  First to our favorite NP, who ran a UA for us and showed it was yuck - again.  Mia's fever rose while I continued making calls to the urology office, who wanted a culture back before prescribing any medication.  

We waited.  And waited.  Our NP here prescribed meds to get her started on, but this infection was the final straw in many months of infections.  Her fever continued to rise.  Her head pounded.  She started vomiting.

Just two days prior, she'd had a clean UA.  How fast these monsters came on each time.  Thursday night came and I didn't sleep.  I sat beside her on the futon in our downstairs office, pleading with God to stop this cycle.  

Friday morning dawned.  Steph, our NP checked in, as she had several times throughout the day and evening before.  She was worried.  My stomach was churning.  This wasn't supposed to happen to me.  I had God and oils and herbs and I was stronger than these infections.  Except I wasn't.  Steph started making calls.  She came to the house mid morning and looked Mia over and finally just looked at me, friend to friend, tired mom to medical professional, and told me we'd done enough on our own.  It was time to go to the hospital.  The urology dept had given her instructions for Mia to come through the ER at the Children's Hospital and said they'd be expecting her.  I felt so guilty.  I'd failed.  And then my sweet friend reminded me that failing is continuing to fight a monster on your own that you can't beat.  It is not a failure to accept help.  

Moms, I'm telling you right now, it is not a failure to need help.  Maybe you all already knew that, but it's taken me the long road to finally figure it out.

Steph sat with Mia while I started making calls.  

First to Mike - no, don't come home, leave work and meet us at the ER.  You'll beat us there because it's faster for you from work.  I'll call you when we're on the road.  

Then to mom - please can you go with me?  I'm terrified.  My baby is sick.  I need you.  

Next to Mike's mom - please can you come to the other kids?  They are scared, because their sister is sick and their mom is so upset.  They need you.  

I started throwing things in a bag - enough for a couple nights and toiletries.  Favorite loveys and books of Mia's.  

The 2 1/2 hour drive took forever.  Mia's fever climbed and we had to stop for more water because she was so thirsty.  I activated prayer warriors, via our sisters, my mommy Bible study group, our pastor, and our family.  As we drove Mia got less coherent, less alert.  We arrived at the ER at around 3:30.  True to their word they were expecting us, and Mike had already alerted them to our arrival.  He came out and carried his little warrior in.  She laid on his shoulder, not moving, eyes barely open.  We waited no time and they took her back.  You go in to the general ER at this hospital, but once you go back then they triage you and take you to the children's ER if you are sick enough.  Mia was sick enough.  Her fever was 104+ and she couldn't stand alone to be weighed.  She had nothing left.  

Once we got to the children's ER I sagged with relief.  I needed help.  Please help my child. 

They pretty quickly worked Mia up, doing vitals and getting a plan.  She was sent for a kidney ultrasound and they did a cath UA, IV, etc.  Once she started some fever reducing meds, she had periods of lucidity.

The ultrasound, of course, showed that this was not a UTI any more.  It was pyelonephritis - kidney infection.  Steph had prepared me for this.  We had to fight harder.  I was also shocked that Mia was dehydrated.  She had seriously had almost double her body weight in ounces of water that day.  Her body was working so hard.  After a call to my NP, Steph, and a couple of chats with the ER doc, it was decided that Mia needed to stay.  She was a sick little girl.  

Waiting to get a room on the floor was actually the longest wait of our entire process.  Our pastor came and hung out with us and, of course, we had grandma Num along.  Mia rallied a little while we were waiting and we read books, watched TV, and snapchatted.  As her fever meds started wearing off, her temperature started climbing back up.  

We finally got a room around 10 p.m.  We were exhausted.  The rooms at the Children's Hospital were exceptional, and although only 2 were supposed to stay, they accommodated Mia's posse of 3 adults for the night.  

Mia's dehydration had thrown her heart rhythm off, and so, as we were settling down, the lovely resident (loved her!) came back in to tell us she was ordering a bolus of fluids to get our girl back to right, and then a continuous drip after the bolus.  It was a long night of machines and vitals and meds.

I stayed in Mia's bed and we tossed and turned the night away.

The next day was Saturday.  

Papa Curtis came up to check on his girl.  Mike had taken the following week off to go to church camp with Xavier.  Mentally I was sure Mia would be going home on Sunday, and so, Grandma agreed to stay with us, and I sent Mike on his way to get ready for camp.  He didn't want to leave.  That was hard.  We did a lot of hard things this summer.

As it turned out, Saturday melted into Sunday, which melted into Monday, which turned into Tuesday.  Mia stayed at the Children's Hospital 5 days.  Many children stay so much longer.  There were much sicker children than my girl.  God gives perspective.

During our stay, there were highs and lows.  Some moments were good and Mia got to wander to activities with her "pony cart" IV stand.  Some moments were low and fevers spiked, patience got thin, and we were reminded that we were there because Mia was sick.

Checking in with the fish in the family lounge.

E-messages from so many loved ones brought smiles.

 Snuggles with an old friend, and a new one.

On Sunday, Child Life did painting on floor 12.  Mia loved that.

Mia was probably the "wellest" child at the activity.  My heart was shattered.

Chocolate treat and a new friend delivered to the room!

The Children's Hospital overlooks Kinnick Stadium.  Awesome view!

On Sunday afternoon, Mia was off IV fluids, using her IV port only for medication.  That meant we got to ditch the pony cart.

Monday morning lab time... They weren't able to draw back out of Mia's IV for labs so she had to have a fresh stick.  Child Life is amazing.

Showering Mia each day took about an hour.  Wrapping her IV site, showering, dressing, working her hair, and resting afterwards.

By Monday I was sure we were going home.  Not so.  Mia had had a febrile fever spike the night before which meant we remained.  Grandma took Mia to dot painting with Child Life in our Floor 10 playroom while mommy got a coffee and adjusted my attitude.

Then we visited the library.

And played games.

 
Took naps.
We had a nice visit from my cousin, Sara, who brought a game, a huge coloring book, and the best box of crayons we'd ever seen.
We went back to the playground when it was cool in the evening for about a half hour.  After the playground, Mia had the munchies.  We raided the snack machine.  LOL

Tuesday morning, we got discharge orders after grand rounds!

One last visit to the playroom while we waited for paperwork.

 Looking so much better.

This hospital stay was a segue-way for Ameliya to a summer of ups and downs.  

We had a month at home after her discharge, to allow her kidneys to continue to heal.  She stayed on meds the entire time, which made her nauseous, but the alternative was so much scarier.  She rested a lot.  She didn't get to do her month long dance class and her heart was broken.  We tried to put some weight on her.  We scheduled a VCUG and follow up appt with her urologist for the beginning of July.

VCUG Time.  Again, Child Life was amazing.  No sedation was necessary.  God bless them.

The VCUG showed a level 2 ureteral reflux on both sides.  Her urine reluxes back into her kidney instead of draining completely.  This constant flow of urine going up and down but not out, allows bacteria to grow, leading to the infections Mia has been having.

After the VCUG, her urologist met with us and we discussed options but he basically said her best option was ureteral reimplantation.  This should hopefully snuff out the possibility of more infections. He said they'd schedule the surgery "soon" and we went ahead and did pre-op counseling that day.

My aunt met us and kept the other 3 children at the hospital.  They got to explore the playground and other areas and see Mia's "world."  After the appts were done we treated them to Hurts.

This was a Friday.  We were shocked when the scheduler called us the following Monday to tell us they were fighting to get Mia on the operating schedule for Friday.  It felt so soon.  So fast.  Dr. Storm did not want to put her off.  He didn't like her fever pattern, her weight loss, and her nausea from the meds.  Could we be ready for Friday if they could get her on schedule?

Um.  Sure.  Yes, of course.  Natalee was at camp, the boys needed scheduled...but we'll make it happen.

July 9th

Mom and Dad and Lauren and Lance agreed to help with the other kids.  Others would have, too, if we needed back up.  And so, I started packing and preparing.  Obsessively.

Bouts of crying swept with waves of frantic planning, followed by more crying.

We went down the night before surgery because we had to check in so early.  We checked into our hotel, swam (as it would be her last time for several weeks), and hit Target for a few necessities.  Mia got to choose what she wanted to eat and we ended up at the food court where she had chicken, fries, and ice cream.

We had to check in early on Friday for her surgery.

That was okay with mommy because I couldn't sleep anyways.  Dolly didn't want to wake up, however.

Waiting our turn.

Pre-op.  Her nerves finally hit.  It's okay, dolly.  We're here for you.

Surgery was scheduled to take about 4 hours from the time we said good-bye, to the time we got back to her.  They updated us via phone and message board periodically.  After we said good-bye, I made it to the elevator before I broke down.  I was trying to get myself back together and failing, having resulted in pacing near the message board (probably not the best way to start a 4 hour wait) when I turned around to pace and ran right into my dad.  Thank you, God, for prompting him to come.  I needed him.  I had Mike, of course, but we were trying to be strong for each other.  It was so nice to have someone there to be strong for us.  As we waited our pastor showed up to sit with us, too.  We're so grateful.
Mia did beautifully, we're told.  They did not have to leave stents in.  Dr. Storm was very pleased with how everything went.

Do you know that this strong little girl didn't shed one tear, pre or post op?  She far surpassed her mother.

We went to floor 9 to recover, and were directly above Kinnick Stadium this time.  The day was a long mix of making sure she was comfortable, trying to take care of ourselves, and just being drained from it all.

Mommy brought Mia's favorite popsicles from home and froze them in the nutrition room.  The benefit to having spent 5 days there was that I knew exactly how everything worked.

A new friend to love from Papa.

Friends and family sent care packages for this dolly with activities for her to do post op.  We are so loved.

She weaseled a PB&J the minute she was released from clear fluid diet.  Ha!

 The night was a long mix of catheter stuff, pain medication, and vitals.  Who needs sleep?

Saturday she was unhooked from the catheter and the IV stand.  We stayed to see how we could handle all the post op stuff.  I won't lie.  This was hard stuff.  Bladder spasms had us running for a potty every 5 minutes.  We had to be mindful of the incision.  It was just a lot.  We had to reign in a 4 year old whose mind wanted to go go go and whose body was saying whoa whoa whoa.

She amazed me with how agilely she sat.  Her incision is low, but was long, and I was shocked at how well she bended.  Walking, however, was painful for several days.

A race car driver visited and the nurse encouraged us to go down and say hello. Mia got to sign his helmet.

Games and activities from friends helped us pass the afternoon.

The doctor came back in late afternoon and gave us the option of going home or staying another night.  I was scared to go home.  Would I have been less scared the next day?  I doubt it.  So we decided to journey home.

Mia slept for the first half of the trip, but the second half was brutal.  Her bladder was spasming and we couldn't get away from a potty.  I thought we'd never get home.

But we did.  Eventually.  2 1/2 hours turned into 5+ hours but we made it.

We praise God for this girl, no matter what she throws at us.  The last couple of weeks have been full of recovery, scares, clinic visits when mommy gets wound up, and trying to rest.

We are so thankful for our village.  We had meals for a straight week from those who love us.  Many people brought activities, not just for Mia, but for the other kids who were trying to find balance between all the attention Mia's been getting and understanding that she's sick.  We were prayed over, loved on, and cared for more than we deserve.
I did not choose this life.  I never wanted to be the mom who knows where the good coffee is at the children's hospital, who can tell you what hours the library is open, which cafeteria is open when, and how to get your parking validated.  I wanted to be stronger than all of this, but God, in His goodness, found me, in my weakest, and He is lifting me up from the miry pit.  He is putting people in my life to show me that I am not alone.  I watched a friend, and my own sister, walk through medical scares this winter with their babies, and guess what?  They probably didn't choose that either.  The truth is, that God is good, all the time.  It's also true that PTSD, after a medical scare, is a very real thing.  Steph, my nurse practitioner, but moreover my very dear friend, has been nothing short of angelic when I've rushed into the clinic wanting UAs or have carted Mia in because I'm scared.  I've cried at more clinic visits than I care to admit because I am tired and I am beaten and I am weary.  So, while I didn't choose this life, it seems to have found me, and I'm not going to shuffle around any longer in the guilt of needing help to get my child back to a place of living well.
This verse I read this morning describes my summer exactly...
In the same way, the Spirit helps us in our weakness.  We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.  Romans 8:26

So many times I haven't known what to say or how to pray.  Knowing people were interceding on our behalf, and that the Spirit was speaking through my tears, my groans, and my fears...thank you, Lord.
She is worth every sleepless night.  Every tear, every anxiety, every minute we've given to finding her well again.

Please continue to pray as her body works these next weeks to prove to us that she can stay well and thrive.  Thank you for being part of our team.