sick

Hospital Stay, Part 2

{part 1}

I didn’t leave the hospital for five days.  I stayed in that tiny room, with monitors constantly beeping and IV drips being changed every 30-120 minutes, and I thought I was going to lose my mind.  Sibby had a sling around her arm to keep her from bending it, which could have popped out the IV.  The sling weighed her arm down and made it awkward to pick her up or cradle her comfortably.  She had cords running out of this and also an oximeter cord attached to her toe. Both of these set off alarms if pinched or crimped.  The first day I didn’t have any clothes she could wear that would work with these restrictions, so she just stayed wrapped up in a blanket.  It wasn’t until the afternoon of the second day when a kind nurse took pity on me and held her while she sent me down to the cafeteria to get some lunch.  While I was gone she pulled a sleeveless onesie out of the hospital stash and carefully dressed her

 

Sibby ran a fever the first 48 hours we were there.  They kept her on round the clock Tylenol and it would immediately bring her fever down, but by the end of the second hour, it would start to creep up again.  This fever, as well as the sling on her arm to keep her IV place, and her malaise, kept her irritable the entire time we were in there.  After that initial nap in her hospital jail/crib, she did not sleep anywhere but in my arms.  This meant that I only slept when N came to visit, in between taking care of things at home, and interruptions from the doctor and nurses.  On top of that, I was very worried about her and had good reason to be.

The first information we received on our first morning there said that something had shown up in the spinal tap.  Added to this, the nurses said they’d never seen something come back this quickly from the lab (normally it takes 24-48 hours for a culture to appear), so either the bacteria was growing very quickly or there was a lot of it.  They tried to reassure me that Sibby was on harsh antibiotics that should take care of whatever was growing in her, but we wouldn’t know what it was or the extent of it for another day.

I hastily googled meningitis and sepsis and stopped when I read, “the number one cause of death in infants.”

My family and friends sent Bible verses and prayers and they literally gave me a thread to hang onto.  When I looked in the mirror at the end of the first day, I was horrified at how puffy and bloodshot my eyes were, a combination of crying all day and sleeping so little.

By the end of the first day, they moved us to a corner room with its own shower and an actual hospital bed for me to sleep in, throwing in as an aside that we would probably be there a while.

As soon as the lab said they saw something, it was determined we would not be there for 48 hours as is standard protocol, but now our stay looked to be a 5-7 day minimum.  My parents, who had literally just moved to Nashville, offered to make the drive up to keep the girls and relieve N’s parents who had weekend plans and company coming in.

I woke up, or more accurately, arrived at the second day of the stay and couldn’t believe I had gone an entire day without seeing or talking to my older girls.  It made me sad to think about and scared at how quickly life can turn.  I prayed we would receive good news from the pediatrician that day.

And good news we did. As it turned out, the bacteria the lab had initially reported was not bacteria, just a stain in the slide. The way they had communicated it had been faulty, however, so the mistake wasn’t detected until this point.  More good news: nothing had shown up in any of the cultures at the 24 hour mark.  This meant that we had a 75% chance of nothing growing in there, period, but would know more at the 48 hour mark.

Thankfully N was with me when we got this news and we were able to rejoice together.  I felt like a huge weight had been lifted from my chest.  Though Sibby was still noticeably sick and with fever, it didn’t seem as serious as what we were first told.

We were still under watch and care for another 24 hours and a no visitor order was placed as well as everyone who entered the room had to wear masks, save for N and I.   We were also told this could just be a virus but the administrations of antibiotics would continue until we could get clear labs at 48 hours.

The next day, the doctor made his rounds and began with, “well we have some bad news. Something did show up today. ”  As it turns out, it was actually three things that had shown up.  Two strains of bacteria in the urine and one in the blood.  The irony being that the spinal fluid, which had scared us initially, was perfectly clear.

Once again my heart plummeted with fear.  We still didn’t know what we were fighting but he reassured us the antibiotics she was on should be nearly all-encompassing, (as it wouldn’t be until the following day when we would have the actual name of the strands and a recommendation from the lab on which specific AB we would need to treat them).  He didn’t seem worried, just puzzled and sympathetic.  But, by getting this info, we had just bought ourselves another 3-5 days in this 16’x’16’ room.

Following this new diagnosis, they had to repeat the blood draw and catheter.  They would send these new tests to the lab and watch them for bacterial growth.  If they came back clear then that would mean the antibiotics did their job and we would also be in the clear.  However, once again, it would be another 24 hours before the first reading and 48 before we would be given an adequate reading to make a good judgement call.

I tried to stay on top of my emotions but the fear crept back in.  I also began to back peddle and piece things together.  Like when her belly seemed to bother her and I had been massaging it, trying to release the gas, when in reality, she probably had a UTI.  No wonder my touch made her scream even harder.  However, a UTI seemed fairly benign and simple enough to treat.  Although, with her having one this young, did that mean she was going to be prone to them the rest of her life?

The blood infection seemed even more scary.  They said two of the bacteria were the same so whatever had been in her urine had quickly spread to her blood.  Had we not brought her in when we did…well I couldn’t bring myself to finish the thought.

And the thought of being imprisoned with no sleep, little food, and a fussy baby, well that was the stuff torture chambers are made of.

I was also aching to see the older girls.  It had now been 48+ hours since I had seen them and I’d only been able to have a short conversation with them since being in there.  Even though I knew they were in good hands, I worried about their peace of mind with all of this transition.

So we pressed on, begging for healing and as quickly as possible.  At this point, our Florida trip also came into jeopardy as we were supposed to leave Wednesday and if we were going to be in here as long as they said, we would definitely not be able to do that.  Selfishly, it felt really unfair to think after all of this, we may not get our time to rest and recuperate on vacation.

 

I encountered a lot of different nursing personalities during this stay, and there was one who took mercy in the early morning hours of this day.  She propped me up in bed, padded me with pillows, and put Sibby on my chest, suggesting we could sleep together like this.  Although I had done this at home, I was nervous to try this in the hospital for fear they would shame me and put even more fears in my head.  I was able to relax that night and actually get a few hours of sleep in between the changing of IV bags and regular fever checks.

It was also on this day that we began to see her fever drop.  We were able to go much longer in between Tylenol doses and her fever stayed at a reasonable level. That was a comfort that things were turning around.

On the morning of day four, the doctor came in for his daily rounds.  He told us the new labs came back clear at 24 hours and we had names for the bacteria present in the old ones.  None of them seemed super scary and possibly could have even been contaminants (to which he said it was fairly unlucky that we would have that happen to two different samples.)  Things were starting to become more clear and our path to exiting this place was starting to open up.

On day 5, we also got word that they came back clear at 48 hours.  This was fantastic news and now we just had to finish her round of antibiotics to be released.  We didn’t know if the doctor would release us Monday or the following day, but we both prayed for Monday as it would give us one day to get ready for our trip.  Also, while in the hospital, we found out N was offered the job in Nashville.  So while we needed to pack up for our trip, we also needed to get our house ready for the market.

I could not have been more excited when, as I geared myself up for another lonely, delirious night in the hospital with no sleep, the on duty nurse came into the room and said we’d gotten the all clear to go home.  I could not get my phone out fast enough to call N.

“Come pick me up, we’re going home!”

It took about another hour of finishing the IV, packing up, taking out the IV (immediate relief from S), and wheeling everything out to the car, but we were finally free and on the road to recovery (and home).

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I still don’t have many answers for this small, but very scary window of Sibby’s life.  I still don’t know what made her so sick, how it actually started (UTI? blood? or just a virus?), I don’t know how close to death she came, or what would have happened if we hadn’t gone in.  This isn’t a story I like to think about too often as it still leaves me with lingering negative emotions, both in remembering the long hours spent in the hospital, and also the fear that came over me while I was in there.  As I said at the beginning of the story, I and our friends and family, literally begged God to spare her life.  He did.  I don’t know why or how, but He did.

And now, because of this great story at the very beginning of her life, she will always bear witness to His mercy.

-smk

 

Hospital Stay, Part 1

In the very scary, early morning hours of June 16, 2016, I found myself in the hospital with a very sick baby, begging God to spare her life.

He did.

 

This is how it started.

June 15, 2016 began as an unusually nice day.  N had taken the girls down to Nashville for two days (interviews) and I was home alone with the baby. This meant I was able to get extra sleep and stay on her schedule rather than trying to fit her into mine & the older girls’.  While the rest of our family was driving home that day, Sibby and I went for a walk, took a nap, and worked a bit.  It was laid back and nice.

They arrived home around 5pm.  I had just gotten Sibs up from her nap and was feeding her when the girls came bursting upstairs to find us.  They showed me all of the new trinkets they had accumulated at Grampy and Granny’s house and were full of stories.  MG paused a moment to comment that Sibby seemed fussy.  While I didn’t want to admit it aloud, I had noticed it too; the only time she seemed happy was when she was nursing.  The rest of the time she seemed agitated and uncomfortable. I retraced my steps that day and thought maybe since I’d had some cabbage and raw vegetables for lunch, it was upsetting her stomach.  I also noticed she seemed a bit warm, but chalked it up to her just waking up from a nap.  I rocked her and shushed her, hoping it would pass and kissed her forehead every once in a while to see if the heat remained.

We moved about the rest of our evening, me tending to the baby, somewhat puzzled by her new constant neediness and also trying to help the girls reintegrate into the house.  After getting the older two down to bed, N and i stayed up to watch a show. I had gotten Sibby to sleep during it but she woke up to eat again before (what I hoped would be)  a long stretch of sleep at night.

As I sat in the green rocker upstairs, the same one I have nursed and rocked down all of my babies in, I heard the clock chime 11pm. N gave me a sheepish look.  “Wake me up when you need me.”, he said. I was already sleepy and beginning to become discouraged as Sibby was now fighting sleep and I hoped she wouldn’t keep me up too late as I was starting to hit a wall.

As the hour stretched on and the sleep did not, I decided to move downstairs to watch tv. I was nodding off in the rocker and needed something new to distract me and help me keep my eyes open.  It seemed that all of my normal tricks to soothe her and get her to sleep weren’t working.  She also seemed really uncomfortable too; her back was arched and legs drawn up and her belly felt really tight.  I’ve never experienced colic before, but suddenly I found myself wondering if this is what I was dealing with.

When she reached the point of crying that had turned into a painful cry (really high pitched and almost screaming), I pulled out my phone and began looking up symptoms of colic.  Everything seemed to be lining up; she was three weeks old (perfect timing for the beginning of it), I had eaten a lot of dairy and raw vegetables that day (cursing myself for it), and the way she was acting, it seemed like she had trapped gas or her stomach was bothering her.  Plus, she could not be soothed.  She also still felt warm, but once again that was written off as a symptom of so much crying and it being a humid summer evening.

I spent time rearranging her in my arms, trying to get her to fall asleep, and also trying to keep myself engaged and awake.  I watched the clock, and looked at literally every five minutes.  I told myself I would give N until 5am, which seemed like a somewhat decent request, before asking him to step in for a bit to relieve me.

As 2am, 3am, and 4am rounded, I grew more and more tired and also more worried.  If this is what colic was, how would I function for the next weeks and months until it resolved?  I also thought it was strange that whenever I would “bicycle her legs”, or massage her tummy to try and help relieve the pain, it seemed to throw her into even more pain. I watched the clock tick slowly by, in 5 minute increments, trying not to sink into delirium.

Finally at 4:30am, desperation won out. She had only slept maybe half an hour and had even refused the last time I tried to feed her. I woke up N, who heard us coming from a ways off.  He leapt out of bed and grabbed her from my arms, shooing me away. But I stopped him, “I’m starting to get worried about her.” I confessed, “She’s been like this all night.  I can’t soothe her….And she’s stopped nursing.”

“Just let me take a try.” he said, “you go get some rest”, sensing the exhaustion in my face, I’m sure.

Instead I pressed, “Will you go get the thermometer?  I think she may have a fever but I’m not sure.”

We both watched as he tried the thermometer, several different ways.  Sometimes it would pick up a fever, other times it wouldn’t. Still unsure what to do, but starting to grow ever more panicky, I said, “I think I’m just going to call the doctor.”

At 4:30am, if you want to reach the pediatrician, first you have to call the hospital and have them page the doctor on call.  Then you have to leave your name and number and wait for them to call you back.  They warned me it could be up to an hour at this time of night and to not miss the call because they likely won’t call you back if you do.

N encouraged me to go to bed while I waited and he would babysit my phone and the baby for me.  Reluctantly, but also very eagerly, I climbed into bed.  Not a minute later, N came in my room with the phone, the doctor waiting to speak to me.

Confession: I hate these moments.  I feel embarrassed and silly and vulnerable all at the same time.  I want them to say there is nothing wrong but I don’t want to put them to work for absolutely nothing.  I’ve never called and they’ve said, “oh don’t worry about that, it’s nothing.”  There’s always a seed of doubt planted, even if it’s minor.

I attempted to describe the symptoms, being careful to add pertinent details like her age and irritability.  He did seem worried but said there was no way we could get an accurate temperature at her age without doing it rectally.  “What if I don’t have a rectal thermometer?” I said.  “Well if you suspect she has a fever, you should bring her in.  With any baby younger than 4 weeks, we admit them to the hospital if they have a fever.  It’s pretty serious.”

I got off the phone and relayed the information to N.  All along, during the worst of the morning hours, I had already considered this scenario.  I knew what I had to do, despite it being the last thing I wanted to do.  I had to take her in.  N couldn’t do it because I was exclusively breastfeeding her.  And he couldn’t come with me because that would involve waking up the other two.  We could call a friend, but who would be available at this hour?  And the closest family was over an hour away.

So despite not sleeping all night, and only getting broken chunks the day before that, I strapped her in her car seat and prayed she wouldn’t scream the whole way.  I got in our car in the cloak of darkness and prayed for our lives that I would be able to make it without any serious consequences due to my extreme fatigue….

Considering how our night had gone, I was pleasantly surprised when Sibby seemed to calm a bit in her car seat and we rode in silence to the hospital. As I drove through the country roads, I fretted over jumping deer, and my reaction time, and her state.

As I neared the hospital, I worried about being by myself with a babe in a scary part of town at such a dark hour.  I was shaken up, scared, and off.

N had given me good directions on how to park and get in quickly and safely.  Once again, I was unsure of what we would encounter in the waiting room and hoped they wouldn’t keep us waiting hours, as some of my friends had done at this hospital before, me trying to keep her from screaming the entire time, trying not to let the lack of sleep overcome me.  But as soon as I wheeled up, they took one look at us, questioned me on her age and symptoms, and we found ourselves in triage.

Within minutes, the ER doctor on call was introducing himself and explaining that because they had gotten a temperature of 100.7, they were going to be doing four tests: a blood draw, a urine culture via catheter, a chest x-ray, and a spinal tap.  Plus, he said, there was no way around it, they would be admitting her due to the fever and her age (less than 4 weeks old).

My head began spinning and my eyes welled up.  Their immediacy made me worry even more and my heart squeezed at the thought of what these tests would put her through.

Or at least, I thought I knew.  I didn’t think about how tiny her veins were and how they would have to put a tourniquet on her arm for many minutes before they would even be able to find a vein.  They would miss this vein and have to call in a pediatric specialist to do it, as well as insert her IV.  The catheter also took several tries and more agonizing minutes of screams where I could only lean down and whisper in her ear for comfort.

Next I carried her down the hall as another nurse wheeled her IV bag and I placed her on a cold table for a chest x-ray.  It felt like abandonment to leave her on that table, all alone, as she cried pitifully, me behind the protective concrete wall.

The nurses tried to comfort me and asked a lot of questions, but I didn’t want to talk.  I was too frazzled and worried and frightened and was constantly on the verge of tears.  They kept reassuring me that I did the right thing by bringing her in, but all that made me think of was how I almost didn’t.

The spinal tap was last and performed by the doctor.  He asked me if I wanted to be in the room, reassuring me it was okay if I didn’t.  I didn’t see any reason it would be worse than what she’d already gone through and opted to definitely stay.

We all had to wear masks as he turned her on her side and, once again, stuck a needle in her baby soft skin.

Finally, it was all over and I could pick her up and hold her close again.  She ate (an encouraging sign since she had refused the last one) and then passed into a deep sleep in my arms.  I carried her, as gently as I could with the IV poking out of her arm, up to the third floor and laid her in a little crib. The kind nurse on duty encouraged me to sleep in the pull out bed beside her.  It was about 7:30am and things back at home were just now starting to stir to life.

 

N was making breakfast for the girls, while making a last minute game plan for the rest of the day.  He called his parents, who dropped everything and drove an hour north to relieve him.

He, in turn, was able to come to the hospital and be with me.

{to be continued…}

-smk

{part 2}

The Sick and the Sad

 

**ive just been doing a little reflecting on how far we’ve come in a year.  This was in my draft folder and I decided to publish it today to remember where we were and how our circumstances have changed**

There is nothing much worse than waking up to the sound of your 3 year old retching.

There is nothing more pitiful than realizing your 3 year old knows how to throw up all by herself and is past the point of even alerting you anymore.

Up until April of this year, mg had literally never thrown up in her three years of life.  She wasn’t even a spit uppy baby.  Oh how I dreaded the day of the stomach bug and did everything natural I could to prevent it.  I’ve gotten a stomach virus every year since being pregnant with her and the thought of getting it again, in all how att, keeps me awake at night. Some people are good with vomit and bodily fluids and the like (bless your hearts, nurses)  But as for myself, I just can’t and don’t.  And pray it doesn’t come out way.  Just the mere mention of those two words together and my palms start to get a little sweaty. I start to feel nauseous (sympathy belly) and I avoid that person like…well..the plague

I hope this isn’t too gross but there is something about vomit that is just so visceral.  I like clean, calm,control (I’m working on it, yall) and the norovirus threatens to wreak havoc on all of that.
But anyway, back to the story.  Just so we’re clear that I ABHOR vomiting…

Her first bout of it literally was one episode andfeeling great the rest of the day.  I felt proud of myself for surviving that.  I felt proud of her that she wasn’t scared when it happened (that is such a weird concept to explain to kids, huh?).  And amazed that a stomach bug entered our house and we all remained relatively unscathed.

Three months later, she picked up another stomach bug.  This one was easy to trace to a source and having been exposed we figured it was only a matter of time before one of us
succumbed.  She was the first to go down but once again it only involved getting sick once and great spirits prevailed.

Forty eight hours later I was starting to relinquish a bit on my bleaching and homeopathic remedies for bug prevention.  I thought we’d once again gotten off pretty easily considering and I felt my anxiety towards stomach bugs in general, lift a little bit.  Maybe this was God’s way of showing me I don’t need to fear (I literally do fear these things) vomit in the house.  By day 3 I was sure we were all clear.

So that’s why day 4 caught me so off guard when I woke up to a revisit from the bug, and the victim was once again MG.

And it happened again on day 5, and day 12, and day 18, 19, and 20 with good and bad days in between.  Around day 6 I started to come down with it and then Bea and N both caught mild versions around day 8.  So we knew it was a contagious bug but our guts (pun unintended) told us there was something bigger going on.

We visited her doctor a few times during all of the sick days.  At first they told us that it’s normal for kids to take a while to recover from bugs like these.  But then they too, started to grow more concerned, as the sickness stretched from a week, to two, to almost a month.  We followed their advice and began to cut certain food groups out of her diet: unfermented dairy, gluten, and raw vegetables.  This seemed to help, but it obviously didn’t cure.

We fell into a predictable pattern.  MG would complain of a stomach ache upon waking up but then would be seemingly normal throughout the day.  She would have a normal appetite and act completely fine.  Then early the following morning, she would wake up, throw up mucous, and then experience stomach cramping, diarrhea, and more mucous-y vomiting for the next three days.

The lowest point for me was once again, the middle of the night, retching, after over a month of sickness.  I begged N to take her to the ER (I was still breastfeeding Bea at the time).  I was sure that a different doctor needed to see her (and was pretty convinced she had giardisis which requires antibiotic treatment)

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He complied. And it turned out she didn’t have it. We were stuck again waiting.  Waiting for her to be healed, but knowing that until something gave, we probably wouldn’t see that.  We just didn’t know how to get treatment or answers.

All of the up and down was really grating on me and all of the sickness was really starting to make me panic.  Even N, the ever calm one, was staring to worry about our sweet girl.

Finally after yet another bout of sickness, her doctor told us to once again follow the diet (which we’d already been doing) but even more strictly.  If she gets sick again in the next four days, I will refer her to a pediatric gastroenterologist, she said.

So when MG did, the doctor immediately got us an appointment.

We didn’t have to wait very long to see this doctor and we were pleasantly surprised when she instantly diagnosed MG with “delayed stomach emptying”.  Basically after a stomach bug, your body produces a high amount of acid for some time while it regulates (can be up to six months later).  That seems to be the root of her stomach aches.  The mucousy vomitting is probably caused by her intestines which aren’t fully healed and are reacting to certain foods.  So for the next three months we were to put her on a low-acid, low-fiber, low-fat, no gluten, no dairy diet.  (so what is she supposed to eat??)  The doctor did say that processed dairy was okay, like cheese and yogurt.  This was all MG heard and immediately began asking me if she could have cheese.

OKay, why not, I thought.  If this doctor said it was okay.  So I gave her a tiny amount with her lunch that day.

Sure enough, the next day she fell ill.

Well, we strictly adhered to the diet from that moment on and she didn’t become sick anymore!  She did complain of stomach aches some mornings and we remedied those with a homeopathic heart burn medication.

I thought we were in the clear until this past week.  The symptoms starting showing up and like clockwork, she became sick in the early morning hours.  Something must have snuck into her food.  That’s all we can figure.  But it is discouraging, as now, three months later, it is another set back.  And it means she isn’t as far along as I was hoping.  The way the doctor described it, I thought it owuld be temporary condition, but now I’m starting to have my doubts.  We go back at the end of Nobemebr, so I guess we will know more then.

She had amazed me with her discipline and strength.  Said someone to her at a restaurant, “how about a grilled cheese or a cheeseburger?!”  “No I can’t eat cheese.”  She has only had one breakdown, and it was over fries.  Fries are okay in moderation but this was just a few days after an incident and we had to watch everything, including her fat intake.  She just looked at me with her hand pressed to her eyes (I suppose in a vain attempt to keep from crying) and said, “but I really want French fries”.  And then cried quietly and bitterly for about fifteen minutes.  That’s about how long she needed to grieve and then she was able to move on.

A few times she has slipped up (like in SS we were old they were going to eat a snack but someone served frosted cookes).  At home she asked if it was okay she ate one.  It broke my heart that she has to think about this things and can’t enjoy her childhood, gifted cookies and all, to the fullest.  It definitely is impactful though when she pays the consequences for getting off track.  And it helps us and others realize this isn’t something in our heads.  We really don’t know what the doctor is going to say in November.  Last time we left with good news but we’ve had a few bleak moments since then and certainly by now I thought we would be mostly in the clear. Until then, however, we forge forward and pray for the best.

I truly admire your strength and discipline, MG.  you will grow beyond your years because of this

 

,-smk

MG and Updates

First of all, I’d like to take a quick second and apologize, so to speak, for my last post.  Even don’t enjoy reading that one.  It is obvious it was written out of a place of stress.  I’m over it now.  I nearly delated it about an hour after writing it over delayed embarrassment, but then realized all of you that subscribe already have a hard copy in your inbox.  It was pointless at that moment…so….

Moving on…

Today I’m not in that place of stress anymore, I’m just feeling a bit sad for my eldest.  Eleven months ago she was struck with some kind of severe stomach bug that did a number on her body and left her with what is a hopefully temporary, but still devastating in the moment condition, called gastroparesis.  I’ve alluded to it here and there but I don’t think I ever fully wrote out my feelings on the subject because well…I wasn’t really sure what to say.

Up until mid-July of last year, MG had a completely normal and healthy relationship with food.  I, myself, have some sensitivities and so I was always careful with her and things like gluten and dairy.  It seemed like a healthy enough balance that we wouldn’t keep gluten in the house, but to allow her to have things like Cheerios in the church nursery or cupcakes at a friend’s birthday.  Yogurt and cheese were commonplace in our house but she never really took to milk, and since I don’t care for it either, I never pushed it with her.  The only thing I noticed was that if she did not have gluten for a long time and then would eat it, she would break out around her mouth.  It seemed minor enough not to warrant a change in behavior but it was something I mentally took note of.

Fast forward to late July.  Our family went on a little vacation that month and we were exposed to a stomach bug.  MG got it first, but had just a minor reaction.  A couple days passed and I thought we were through with it.  But then…she got it again.  And then one by one we each contracted it, over the course of about two weeks with MG having relapses every few days.

I took her in to see a doctor after the third day of vomiting.  She reassured me that sometimes viruses can last up to two weeks in children and possibly MG became reinfected as we were passing it around to each other.

So it was put to bed for a few days.  And then, it struck her again.  Again I called her pediatrician.  She told me not to come in but to call if she wasn’t over it in a week.

A week felt like a lifetime to watch my little frail girl suffer again.  Not to be melodramatic but this week was literally one of the worst of my life.  On the days she would be sick, we would be awoken to MG vomiting in the bathroom (she nearly always made it to the toilet and it just made me weep to think this little 3 year old already knows how to drag herself to the toilet in the darkness of the early morning without even alerting us first).  This would come around 4-5am.  Then she would lay on the floor by the bathroom and sleep for another few hours.  She would want very little to eat for the day, maybe some toast and “fizzy drink”.  She would lay in her bed and watch Sleeping Beauty on repeat (it was one of the few children’s movies we owned and we didn’t have cable.  Later we wisened up and started checking out more movies from the library).  Too tired to play, she would sleep off and on throughout the day and then fall asleep exhausted in her bed at night.

The next day she would wake up, a little off, but fine and we would grow optimistic that the terrible illness that had her in its clutches was behind us.

And then 1-2 days later she would relapse and we would start the terrible cycle over again.

At the end of the week, I called the Ped and begged her to see us again.  She seemed rather surprised to see us and a little alarmed too.  She immediately referred us to a pediatric gastroenterologist and our appointment was just a few days later (I think at this point it was September).

I was very pleased when that Dr. immediately seemed to recognize the problem (we saw three other doctors over the course of that month and none of them could tell us anymore than  it was just a long-lasting virus). She diagnosed MG with “stomach-emptying syndrom” or gastroparesis and put her on a special diet.

When you have this condition, your stomach doesn’t clear food out as quickly as it does for someone in good health.  So you feel fuller more quickly, you are more prone to stomach upset and bugs, and you have to watch what you eat as high fats, high fiber, high acids, and dairy seem to set stomach aches on the mild end to vomiting and diarrhea on the more severe end.

The diet was pretty stringent and our whole family shifted to accommodate her while we adjusted to this change.  Eventually we added fiber and fat back into her diet, but in moderation or else she would get a stomach ache (still ongoing as of this month).  Dairy has been a constant issue ever since and will still set her off violently if she is exposed to it.

Unfortunately she has had two of these “violent” incidents since first meeting with that doctor back in September. The first one was because this doctor told us “processed dairy” like cheese and yogurt would be okay.  MG heard “cheese” and begged me for some for lunch (I had taken her off of it when the stomach bugs were reoccurring.  I conceded when the doctor said it was okay but we paid the price for it.)

The second time happened about a month later when I didn’t ask enough questions at a potluck and she was exposed to it again.  Both of these times brought me to my knees and after the second time especially made me strictly guard everything that went into her mouth.

We went back for a follow-up appointment in December and the Dr. seemed pleased with her progress and then dangled a little hope for us that maybe in 6 months we’d be able to reintroduce dairy, slowly.

Well here we are six months later.  MG has held onto this hope that after today she would be able to start eating cheese and yogurt again if nothing else.  It is amazing how much she picks up on as I never told her this would be a possibility nor tried to encourage it.

I’ve also been similarly pleased and a little heartbroken for her as she carefully tries to explain her “condition” to other kids.  “My doctor shut me off of dairy” she says confidently when trying to relate to other kids. Some mistake this for a sense of pride when she talks about it but I know that it is different.  There is a sense of sadness that I intone when she says this but at the same time, she is unwavering.

In fact, the only time I’ve ever seen her cry over it was after the very last incident.  We ratcheted down on her diet again to give her stomach time to heal.  We were out of town at the time and thankfully found a Chick-fil-a to eat lunch out (fast food places are nearly impossible on this diet).  I wouldn’t let her have ketchup to dip her grilled nuggets into because it is high in acid.  She broke down in the booth.  Not in an agressive temper tantrum, but in silent tears.  This was by far one of the lowest points for me.

Fast forward to last night.  As I was getting her ready for bed I explained that she was going  back to her doctor in the morning.  She was laying on her back and she pumped her arms and legs in the air and said, “I can’t wait to be on dairy again!”.  I tried to explain that the doctor might not give her the green light yet and even if she does, we would have to take it slow.

It was too late though, the hopeful seed was already planted.

This morning we saw the doctor and she asked the usual questions.  She seemed a bit concerned that MG hasn’t put on weight since December (and she is already on the slight side).  She asked us a lot of questions about her appetite and we addressed some concerns.  At the end, I could feel MG staring at me, waiting for me to ask the question.  I did.  The response was that dairy would not be a good idea at this point and probably not until she turns 5 or 6.

I waited until the doctor left and then looked at MG.  She asked me what that meant and I explained that we would have to stay away from dairy for a little longer.  “Like how long?”  “Until you get a little bit bigger, like 5 or 6.”

Her face fell and she got really quiet.  She said, “But that’s not fair.”

She was right, and I knew it.  And I could only agree with her.

So another year we will press forward of bringing “special” dairy free snacks to Sunday school and birthday parties, and always packing lunches for dinners out.  If I’m being honest, I’m mad that this is the way things are for her.  Four year olds should be able to eat whatever they want without having to worry about stomach aches and doctor visits and having something strange about them that sets them apart from their peers.

And she knows it too.  But that little frail one is pretty resilient (and she comes by it honestly).  And so we press on.

-smk

Crappy Halloween

What could be better to a nearly four year old than free candy?  Wearing a princess “dress-up” out of the house!

 

Halloween actually meant something to MG this year. She doesn’t remember much from our life in our old neighborhood, but the flower costumes definitely made an impact on her.  This year, she finally figured out that she got to choose her costume and of course she was all over that.  “I want to be a Princess!” (without hesitation).  Well, which princess?  “I want to be Sleeping Beauty, and Rapunzel, and Elsa, and Snow White!  Can I do that, mommy?”

Ultimately she chose to be Elsa for our church’s harvest party and then selected Sleeping Beauty for Halloween night.  (funny side note:  she’s actually still not seen Frozen, but those darn princesses are EVERYWHERE and by now MG knows their names and the names of all the characters in the movie.  But when people would say catchphrases to her about the movie, she would have no idea what they were talking about!)

The Harvest Party/Nursing Home party both landed on Wednesday evening.  Unfortunately, Bea was running a slight fever that day which grew worse as the evening wore on.  I could tell she wasn’t feeling well when all she wanted to do was be held at the party.  I’m sure it had nothing to do with the costume either.

 

 

When we told MG that the party was at church she kept talking about her friends in her little Sunday school class. There are only two other friends in the class and she kept mentioning them by name saying, “I hope they like my dress” <batting eyes and all>.  She did run into one of those friends, who did indeed, like her dress 🙂

 

The next day, the same viral sickness that was making Bea miserable hit N like a ton of bricks.  So much so that he came home from work early (I think he’s done that once?) and slept the entire afternoon.  MG and I took turns tending to our sick patients.

Finally, it was Friday.  Bea seemed to be feeling a bit better and so did Daddy.  We did have plans to go hang out and do some trick or treating with friends (who live in a neighborhood, because we don’t live in a neighborhood anymore—weird!  And we didn’t have a single trick or treater this year—weird!!).  But due to the ongoing fever we decided to bow out, knowing I could just take MG to some local festivities.  I took Bea to the doctor in the morning just to rule out anything serious.  I let MG wear her costume to the office and for errands later since it was Halloween and all.  She was over the moon!

 

Later that day, during her quiet time she told me she was going to take a nap (which she rarely does and it is NEVER announced) so I thought, “great, she’ll be well rested for our fun tonight!”  I was so excited to wake her up and help her get into her costume which she had picked out hours before.  Only, she woke up with a fever and feeling terrible.  Shaky, achey muscles, no appetite, and all she wanted to do was lay down.  She even said, “I don’t think I want to trick or treat tonight!”.  How pitiful is that?

 

At least she got some candy from the previous parties and our neighbors said they would save her some treats too.

Admittedly, I’m starting to get frustrated at how sick we’ve been this year (and really in just the past three months) and how many fun things we’ve had to sacrifice because of it.

Here’s to hoping for healthy immune systems this winter!

-smk

Allow me a few words

to complain?

 

This awful sickness still has MG in its throes.  After 5 days of normal health (and for the most part, behavior), she woke up on Wednesday morning with another stomach ache and vomiting.  I can not believe this.

Thursday morning I took her into her pediatrician and came prepared with the lab results we’d had completed just a few days prior.  Nothing suspicious turned up as far as bacteria and/or parasites.  She seems to think it is still just a virus, taking its time working its way out.  (I’m not convinced, I have another theory, but it remains to be seen).

On Thursday she had awoken without pain and seemed hungry and normal.  It was nice to have my happy girl back, even if it was just for a day.  She kept asking me, “are we going to the doctor for ME??!”  Yes, for you.  “Thanks.”

And then early this morning she woke up to more vomiting and other symptoms.

I pleaded with N to take her into the ER, sure that my theory was correct and that she needed to get started on antibiotics.  But the ER doc shot my theory down based on his personal experience and recommended a continued “wait and see” approach along with another lab work-up.

 

I just can’t get over how long this has lasted (three full weeks), how draining it is (emotionally & physically), and how helpless I feel (I constantly rack my brain trying to come up with a solution or at least figure out what it is or what caused it).

I am so tired of trying to keep the girls quarantined, of the mountains of laundry, of scrubbing my hands raw, and of trying to come up with palatable meals that don’t involve lactose, red meat, raw vegetables, or fruit.  I’m tired of over-analyzing every rumble in my stomach, being home-bound (I miss just doing normal stuff!), being on a consistent schedule, hearing MG play dress-up and use her imagination.

I am sick and tired of being sick and tired. (can you tell I’m feeling a little sorry for myself!?) Please, please, let this be the end of it.

-smk

I spoke

too soon.

photo

What costs

-7 pounds of human flesh

-the last day and a half of summer break

-a princess tea party you’ve been anticipating all summer, among other get-togethers planned with friends and family

-a night and a half of sleep?

Answer: something even probiotics, EO’s; activated charcoal; cleanses; local honey; vigorous hand-scrubbing and laundrying; and homemade chicken soup (made with homemade chicken stock) can’t defeat.

Yes, Mama’s down for the count starting early yesterday morning.  As of this morning, MG is on her fourth round.  We are taking her into the doctor today.  So discouraged, tired, weak.  Please pray for us.

SOS,

-smk

Surviving the Puke Virus

Oh law, y’all, it has been a week.

I’ll spare you the gritty details (literally and figuratively) and say it was a 9 day entanglement we just narrowly emerged from.

Some things we learned?

-if MG ever says her tummy hurts and that she just wants to lay down, you have a thirty minute or less window before IT comes

-MG has really, really good aim.  I’m seriously impressed with her

-Bea eats right through a stomach bug.  It doesn’t even slow her down

-I had an intense fear of the v-word prior to this week.  Perhaps this is survivor’s benefits speaking, but I’m feeling pretty invincible right now.

Yesterday was our first full “good” day and I had to snap some pictures of the girls in their new dresses I made from them out of the Disney Princess fabric I found at our local Hobby Lobby.

MG was, predictably, beside herself.

 

-smk

Happy May Day!

Wow–my life certainly looks a lot different today than it did one year ago.

I can’t believe we are in Bea’s birth month and almost ready to celebrate her first birthday!!

Common to the theme of the year, we took a short, unexpected/expected jaunt to TN to say a final goodbye to one of my dear, great aunts at the beginning of this week.  I’m not sure if it is all of the curve balls or we just got especially blessed, but the girls are turning into some pretty great travelers.  We did 16 hours on the road over the course of three days…and at this point, I think I’ve spent about 20 days in my own bed in 2014.

The only hiccup we had in the trip was about 7 hours and 20 minutes into our 8 hour drive home yesterday evening.  The girls had both fallen asleep since it was past their bedtime.  Bea woke up suddenly and started crying.  Both MG and I attempted to calm and pacify her when all of a sudden, out spewed the contents of her dinner. . .all over her, all over her paci, all over her car seat.  We pulled over and I did my best to baby-wipe it up, but there was nothing I could do about the soaked car seat or smell (seriously, what do people do when this happens to them 3 hours into the trip??).

I’ll admit it, I am NOT cut out to be a nurse.  I hate, hate, hate bodily fluids (especially of the orange variety), and I fret and worry about my babies while feeling paralyzed with indecision over what to do.  But oh my goodness, it became clear to me last night that MG could have a nurse’s heart.  As soon as Bea lost it, MG was on high alert, giving me updated details from the back.  She held Bea’s hand the entire way home and was not phased by the goo it was covered in.  When Bea became upset again, MG began singing Jesus Loves Me to her as I stroked her hair.

“Mommy, Bea’s not sleeping!”

“I know, buddy, she just doesn’t feel well right now.”

“Should we just keep petting her?”

We made it home (shout-out to N who raced us there and then stripped and washed the car seat and pukey clothes for me at 11pm!!)  and almost immediately had another repeat incident.

But then?  We all slept well and everybody else is still standing.  Just a random fluke (puke?) I suppose….

Or a reminder to be thankful for the unique giftings of my eldest.

photo (3)

-smk

 

Today

things are looking much brighter

she hasn’t complained about pain once today.

Last night Daddy kept vigil

Image

and it was the first thing she wanted to talk about in the morning.  “Daddy slept next to me so I wouldn’t be scared.  After he took a bath.” (shower…semantics)

And this cute picture

makes me sad when I remember my sweet, tired, patient yesterday.  All the excitement wiped them right out.

Thanks to all who have checked in, prayed, and brightened our day with little notes and gifts!

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