Our Precious Vivian

Our hearts are desperately heavy and broken.  Our beautiful, precious daughter died suddenly yesterday morning at St. Lukes in the ER.  They tried for 45 minutes to bring her back, and there was just nothing.  She had been lethargic and had a little bit of runny nose.  She checked out fine at the cardiologist on 9/13, although she had gained 15 oz in two weeks.  Looking back, I think that was the start of this unhappy path.  Right after that she was tired a lot--we attributed it to the cold.  I too had a cold and was quite tired.  We took her to the pediatrician on 9/19.  Again no serious warning bells and checked out alright.  Just a little swelling in her face and abdomen.  Vivian is so tiny that a little swelling can actually disguise itself as "healthy."  She enjoyed her bath daddy gave her and slept through the night.  She babbled to daddy the next morning until he left to take Isaac to preschool.  I gave her a sippy cup of water while she sat on the couch watching PBS kids and fixed her oatmeal and carried it to the table.  Then I heard her cough, ran over, saw some blood and she passed in and out of consciousness in my arms.  In a microsecond I thought we could get to the ER faster than an ambulance could get out to us.  I grabbed Jaret and we left.  Vivian was deteriorating as we were getting there.  Her breathing so labored....she took her last breath and fell forward...I saw her in my rearview mirror as I waited for one car to pass and turned into the St. Lukes ER.  I remember popping a curb, blaring the horn, and running in with her as I yelled to someone to be with Jaret.  I yelled her heart condition and hep B carrier and recent surgery.  They tried so hard for 45 minutes and could not get heart activity. 

We are totally in shock, denial, devastated, you name it.  We had the boys there to say goodbye, and we held our baby for 5 hours before we could summon the strength to leave.  Ken's folks took the boys to their house earlier.  Ken and I followed each other home in our vehicles.  We just unpacked everything we had packed on our vacation which we were planning to leave at noon.  The company graciously returned our money. 

We'll stay home from our trip, but Vivian took the best trip ever...home to Jesus in heaven.
Now we know she is healed fully and can finally be the happy skipping toddler.  I hope she found and met her Grandma Donna and Great Grandma Eleanor (my mom and her mom).

Love,
Keri and Ken

August Already

Hello Everyone!
Sorry to be offline.  I was right that it would be harder to be consistent at home.  The first week home was rough.  Within an hour of home arrival, we had the home health nurse here and all of our medical equipment which really just consists of a feeding pump, an oximeter, an IV pole, and then a couple bags of medical stuff like tubing and feeding bags for Vivian.  The doctors had Vivian set up to receive 600mL of Pediasure in 10 hours overnight.  That was too much, and Vivian would throw up if not just spit up about every morning.  So, we had mounds of laundry plus the ever present pressure of "trying to get calories into her during the day."  By Friday morning (July 22nd) we had something of a routine down and had expanded to 12 hours and slowed the rate from 60mL down to 50mL/hour.  However, I completely freaked out when I checked on Vivian to find she had thrown up in her bed sometime between 6:30 and 9:30am and the tube and come up and out her mouth.  Yes...now it was in the nose and out the mouth.  Completely disgusting, and I had to deal with it!  I called a nurse to come over IMMEDIATELY and help me.  Long story short, she came, and we got Vivian bathed and fixed up.  I put the tube back in with the nurse holding Vivian.  No, it's not any fun, but I see why they trained us at the hospital now.

So....when Saturday morning came we fed Vivian some breakfast and had a repeat performance.  We left the tube out during the day and replaced it that night.  It took three tries and was very stressful.  We did the same thing on Sunday night.  Even though I was successful at getting the tube into Vivian, I dissolved into tears and dreaded Monday and the weeks ahead. 

Fast forward to this last weekend.  The tube stayed in place all week until Sunday night.  At this point I've met with the cardiologist who is following Vivian closely.  He gave me "the blessing" to leave the tube out and just keep working with Vivian on eating enough calories during the day.  This last weekend Vivian's appetite has started to pick up, so that helps some.

We spend A LOT of time feeding Vivian because it's a tricky balancing act.  We basically give her snacks about every two hours or so.  She will eat 10 to 15 bites at the most sometimes, and everything needs to be pureed.  The biggest goal is for her to continue to get sufficient calories for healing.  We can't feed her too much or let her drink too much at once or she will throw up.  She has an "angry gut" due to all the strong drugs she had while in the hospital.  She struggles with some reflux due to all the Pediasure she is getting.  In general she is not super coordinated in her swallowing capabilities which causes her to cough which can turn into a gag reflex and you know what comes next.  Plus, she struggles with some textures of foods.

If we can get Vivian's gut to calm down and not cause her to throw up, I can so deal with everything else.  Tonight I went to BBB and bought a Magic Bullet blender with the intention to puree whatever we are eating and give to Vivian.  I've been limping along on babyfood, oatmeal and pudding so far, but she could use more nutrients. 

Today is Tuesday, August 2nd (for a little while longer).  To bring you up to date, Vivian's last night feeding was Saturday night.  The tube came out at dinnertime Sunday night (by this point no panic calls to a nurse--we take care of it ourselves).  Monday morning I took Vivian to physical therapy for first time in 6 weeks.  This morning I took Vivian to occupational therapy for a feeding evaluation.  Tomorrow Vivian has a cardiology appt. again. 

Yes, we have an intense schedule with Vivian, and it will get easier as the weeks go by.  The boys are doing well though.  I have awesome friends who have helped me out so much I'll never be able to repay them.  The boys are finishing up swim lessons this week.  I am doing some thinking an mental planning for Jaret's school year, and I have forms to get done for Isaac.  He is going to a new preschool called Holloway House, and he is pretty excited about it much to my relief.  He was so ornery last year.

Well, I better head to bed!  Love to you all--thanks for listening.  Will try to get some photos up soon.

Home Sweet Home

We are home at last.  We left the hospital yesterday at 3pm.  I'm not relaxed yet because we are trying to get the hang of the home equipment we need to use and to Vivian's schedule.  It's like the hospital where I stay by Vivian's bed until she falls asleep because otherwise she moves around and tangles herself in the wires and tubes.  And, we are working on various appts for her too.  At the same time I am encouraging her to eat food by mouth during the day so we can transition off the feeding tube!  Small steps are the key.  She is drinking her Pediasure by mouth and took almost a half jar of BF(babyfood) sweet potatoes today so far.  She is more willing later in the day to eat.

Aside from Vivian I am trying to unpack the many hospital bags (where did they all come from?), reacquaint myself with our home and what we have and what I need to do or shop for!  It was nice to sit next to Ken in the evening for a change!  And, our towels seem extra fluffy after hospital ware!

Thank you for your continued prayers for Vivian's interest and ability to eat by mouth to perk up! 
Love, Keri

Tomorrow, Tomorrow..You're Only A Day Away!

Hello!  Sorry I haven't posted photos for a couple days.  They would look about the same though.  Vivian loves to get wagon rides and go for walks in her walker.  We also carry her around, like to the game room where the boys are playing far too much wii.

She is eating a little bit of pudding or some from jars of baby food they stock at the hospital.  She drinks her vanilla flavored Pediasure and takes sips of water.  We tried one tiny nibble of pancake this morning and up it came with some formula.  So, she is struggling right now with food that has a structure to it or is a finite piece. 

If we are discharged tomorrow, it will be later in the day.  So, this may be my last post from the hospital, or next to last post before I return the laptop to the hospital.  Vivian will need a final heart echo done and a final chest xray.  We will meet with a dietician, and a psychologist who specializes in feeding issues.  We meet with our hospital social worker who is setting us up with home health.  Our hospital physical therapist will be by to see Vivian.  And maybe the music therapist will be by...I'll request her too.  These other things, while numerous, can be brief.  The doctors round between 9 and 10am.

I also just realized Ken has an appt in the late afternoon which means he would be down here at dinner time.  We would then get home late..just in time to settle Vivian into bed and get the night time feeding started.  We may have to see about rescheduling.  That might be a lot to do upon getting home!  Well, I'm off to bed.  Love, Keri

NG Tube Certified

Just a quick post as I am pretty tired.  Today was a better day and looking up.  Ken and I each performed the NG tube insertion into Vivian this morning.  It went well...better than yesterday's experience.  After that my stress level has settled down.  I can tell because I am now really looking forward to getting home to familiarity.  Vivian did great today.  She was willing to eat some applesauce and some pudding too, and she did not throw up today.  Whew. 

We are biding our time waiting for the weekend to end, so we can get ready for discharge.  We are going to ask for discharge on Monday.  The only thing, I think, that would hold us back is if we cannot get our home equipment for Vivian's feeding on Monday night.  Or, the doctors might want another day of us feeding Vivian here to get a feel for her current eating status, like if it is ramping up or not.  She will be done with her taper medications on Sunday at midnight.  She is getting so little now it's kind of funny.  They bring in a syringe that literally has one drop in it. 

It will be interesting to get used to this schedule for nightly feedings which are currently set to 12 hours long.  She won't be in bed that whole time, I don't think.  Well, I better crawl into bed now.  Love, Keri

Irony and Ornery, I S'pose

I didn't expect the end of our hospital stay to be as stressful as this.  I don't want to speak for Ken, but I did not have a clue that feeding would be such a big issue.  Oh, man.  Vivian smiles and turns her head away.  She won't hardly accept her favorites:  bananas or vanilla pudding.  My entire mission the last three days has been to order whatever foods off the hospital menu and try giving them to Vivian.  She took 10 sliver-size bites of things two days ago.  Yesterday less than that but did start to drink Pediasure out of her sippy cup.  Today not much luck either.  I took her for a wagon ride outside on the hospital campus.  We sat on a park bench and watched people, traffic and nature.  She was so distracted she willing accepted bites of baby food applesauce.  I was so excited thinking I could report she ate a jar (50 calories).  As we were sitting there she suddenly burped and then just threw it all up.  I was so surprised and disappointed.  If only...if only...  Did I push too much?  She willingly accepted each bite.  Push the calories vs. try not to have her throw up...what a struggle.

Anyway, I was pretty dejected walking her back up to our floor to report it to our nurse.  My mood, I'm embarrassed to say, remained sour throughout the evening.  Our fun-filled evening included watching the nurse put the new ng tube into Vivian's nose and stomach.  Oh the joy watching our daughter turn red, purple, cry, gag, and proceed to throw up the rest of the calories I worked to get into her today through the Pediasure.  And, just think, I get to look forward to when my turn comes up to do the same thing.  I don't doubt I can do it.  When all is ready it only takes a few seconds to get the tube in, everything else takes longer.  It's just the detail that it's MY child.  I am the same person that runs to my child in distress to comfort whoever needs it.  Wish I could be excused due to conflict of interest. 

Interestingly, at midnight last night I didn't mind sharing my opinion with the nurse about taking several tries to get blood pressure on Vivian.  It takes several tries to get blood pressure on Vivian...period.  It's tricky.  The nurses get two to three tries before Vivian gets really ticked off, and then game over because it won't be accurate after that.  I woke up to Vivian crying and quite upset while the nurse kept trying.  I told her to quit it and get a new machine.  She did quit and leave at least.  Funny thing THIS evening, a nurse came in to use the blood pressure cuff and inadvertantly discovered the cuff was not the right one to be used with that cord or machine.  Well, that was validation.

Tonight after Ken and the boys went down to their room to sleep, I heard a whisper of Vivian's voice for the first time.  Oh, yes, believe it.  We are still waiting for Vivian's voice to return.  We are also waiting for a very huge and ugly bruise on her arm to heal that has been there since surgery.  Like every medical staff person asks or remarks on that from day 1, and that is the one thing that about drives me crazy!  It's obviously a failed attempt at an arterial line or IV and yet people keep asking us.  It wasn't there when we went into the OR but it was there when she came back. 

Back to the ng tube stuff.  We will take home an oximeter machine too for Vivian to wear nightly.  This will set off an alarm in case Vivian pulls the tube out of her tummy and it stays in her throat causing her to aspirate.  Hmmm...will I ever sleep again?  Goodness.  Past experience from others says that tons of kids will try and pull the tube out in their sleep.  Actually, Vivian has been very good about this in the hospital...maybe we are catching a break here.  If she leaves it alone, we will only have to torture her with this once a week or less.

This point in time is probably the hardest part.  Hopefully, it will get easier and less scary.  I know in the big picture it is the best for Vivian to get her continuous calories to heal and grow.  I hope that overall she will start feeling better than before surgery.  And, I hope she will not develop further oral aversion by having the negative stimulus of a tube in her throat all the time.  I will try to be more positive in a future post.  Love me anyway, Keri

P.S.  Yes, the previous photos I have posted look super of Vivian's recovery but don't portray the struggle of eating.  Ironic, isn't it?

Three Weeks Today and A Learning Curve

Thursday, July 14, 2011

I haven't mentioned this on the blog yet, but we will have to bring Vivian home from the hospital with an NG tube for feeding.  It's very important for Vivian to get a certain amount of calories a day for her surgical healing.  She does not have any reserve to pull from either while she is recovering and not desiring food, so we can't afford to wait for her to decide she is hungry and will eat. 

In the next few days Ken and I will train on how to insert the NG tube into Vivian.  She can keep it in for a week before changing.  Vivian will most likely need supplemental nightly feedings for the next 6 months or so.  I think in the next month and a half, the doctors will evaluate her handling the trauma of the NG tube, and if she continues to have a strong aversion to food, then we can have a simple operation of putting in a G tube.  (Just realized I should explain.  The NG tube goes through nose down to tummy and can be taken in and out as needed.  G tube is put in in operation for direct access to tummy and is removed through another operation).

Admittedly, I am overwhelmed by this and was in no way prepared for feeding issues.  Especially since she did not have feeding issues coming into the surgery!  The positive side to this is we have a way to get Vivian extra nutrients for growth and brain development and healing.  It will actually lift a burden off our shoulders that we have been carrying since the day we were given Vivian.  We have been trying to feed Vivian and have her gain weight, and we have succeeded to an extent.  She has only gained weight under our care, but slowly.  I wish I had known or sought out some of those tricks to ADD calories into her diet.  At home now I will add Pediasure to her oatmeal and extra butter on potatoes, etc.

Our discharge forcast is for midnext week.

We would love prayers for us in this new transition and for Vivian to be comforted or at peace with this "not-so-fun" process she will have to repeatedly endure.  Love, Keri