ER

After 6 months of ER avoidance, we made an unexpected trip there this morning.  Abby spiked a 103+ temp early this morning.

She woke up a little before 6 am.  As soon as I saw her I knew she was Sick.  Within minutes she quickly went into a status (prolonged) seizure.  After some very fast Tylenol and Diastat we loaded up and headed to the hospital.

The seizure stopped while en-route,  but she was struggling to breathe.  A nurse met us at the door and quickly got her hooked up to monitors etc.  They did all the usual blood draw for labs, IV fluids, O2, chest x-ray, head CT and more.  She needed oxygen for about 2+ hours and got a breathing treatment which helped.

All of her tests came back ok.  Her WBC were a little elevated so she got a dose of Rocephin.

Once she held her O2 sats ok on her own without O2 we got to take her home.  She has been very lethargic and sleepy all day.  Her fever is better controlled with meds and hopefully we can just ride this virus out over the next few days.

Josiah has been a little sick too.

This will be a week of more down time now that we can cancel our many appointments.  Not such a bad thing every now and then.

New Tube

(Yesterday)

Abby's GJ-tube replacement procedure went very smoothly!  They fit us in this afternoon, even if they were an hour behind schedule.  We were just thankful to get it done today.  Abby seemed uncomfortable last night with the slow drip into her stomach.

They didn't do IV sedation this time which surprised us... the last two procedures they did.  The doctor came to get her himself and carried her to the procedure room.  He was so sweet to Abby.  He said she probably wouldn't need deep sedation.  It took about 20 minutes.  They must have given her something through her tube to relax her or something b/c she came back a little groggy, and he mentioned that she slept through the most uncomfortable part.

She was SO hungry by 2 pm when they finally took her back, after not having anything all morning.  While we waited, Patrick distracted her by tickling.  That was the only thing that helped her stop moaning, even if for just a minute.

Baby Hunter will probably be having surgery soon.  Please continue to pray for him and his family.

Another new tube

Abby's weekend (ambulatory) EEG is over and it was able to capture at least 6 tonic clonic seizures and other questionable behavior.  The doctor should have plenty of data to examine and hopefully we will hear soon what we are dealing with.  Abby seemed rather unhappy most of the weekend and of course tired from all the seizures. 

(Finally happy snuggling with Connie after an hour of fussing in bed)

(Wearing Josiah's batman cap to help keep the wrap on her head)

(Scrubbing the stinky glue out of her hair... she gave some cute smiles)

We enjoyed some fun time with Aunt Connie and (soon to be) Uncle Matt!  The kids loved lots of cuddle time and plenty of extra attention.  Thanks for coming to visit guys!  Can't wait for the wedding!

Well, today we had some unexpected excitement.  Abby's J port came out some time during our transit from UCP therapy and home.  We found her soaked with milk once we got home... she tried to tell us, but of course we were clueless. 

This has happened a few times in the last 6 months and we have been able to "pop" it back into place.  (the tube itself is still in place)  Not this time.  It is broken.  The rest of the afternoon we continued to soak up drainage coming from the open port while we waited several hours for the nurse to call us back.   Finally she called to tell us that she wasn't able to make an appointment yet to have the GJ button replaced.  

Because it was leaking so much we had to take out the entire tube and replace it with a temporary G-tube.  It went fairly smoothly although uncomfortable for Abby.   I always have a moment of inner panic/turmoil during these events, worrying that something might go wrong and cause more pain for my little girl.  Thankfully she is now being fed VERY slowly into her stomach to prevent reflux and dehydration while we wait for a replacement.  

It's been over 1.5 years since we have fed her into her stomach (G port)... she isn't used to it.  The nurse should be calling tomorrow to let us know when her replacement procedure is scheduled.  She will be put to sleep again and won't remember the event.  The IV stick is the worst part for Abby.

Please pray for baby Hunter.  Patrick's cousin and best friend Bill and his wife Shannon just had a beautiful baby boy 3 weeks ago.  He is having tummy problems and might need surgery soon.  Pray for wisdom for parents and docs, as well as a smooth procedure if it is required.

Our gauze baby

Abby had her EEG put on today.  She did great except for some loud yelling when I had to hold her head still.

The tech wrapped her head in gauze, but not tightly enough!  Argh!  Now we are home and she is doing her usual head rubbing against the cough and the gauze has come loose and is slipping off.  I've tried to fix it with an ace bandage and more gauze but to no avail.  Patrick is coming home soon to help me re-wrap our darling's little head.  

You'd be amazed at how quick and sneaky those little hands are!  I'll be surprised if these wires stay in place for the next 2 days.

She looks pretty funny right now with a large tuft of hair and colorful wires sprouting out the top of her head wrap.

Her blood levels for Keppra and Zonagran came back... the Keppra level was appropriate, but the Zonagran was a little low.  The doctor wants to wait for the EEG results before making any medication adjustments.

Praying that this test will reveal Abby's true seizure activity and will give us a better interpretation into her behavior.  

Looking forward to a fun weekend with Aunt Connie & (soon to be) Uncle Matt!

(tuckered out from this mornings excitement)

26 Weeks

Now we are in the 26th week.  It's pretty exciting getting closer and closer to "safety".  I'm sure we probably seem overly obsessed with our pregnancy progress, but anyone who has had a preemie would understand.  Every day can make all the difference!  

I can't believe it's April!  Yippeee!

Over the past several weeks we've been working with one of Abby's PT's (physical therapist) to get her fitted for a new gait trainer.  We finally settled on the Kid Walk model and actually filled out the order form this week!  Hopefully it will show up anywhere from 6-8 weeks.  

She seemed to do pretty well in it during our practice sessions.  It has some neat features such as bouncing action, hip sway side to side during walking, and large wheels for the child to push themselves.  She obviously can't propel herself yet using the wheels, but she does put her hands on them and shows interest.

(Josiah playing with Gigai at UCP during therapy)

Tomorrow we go back to the neurologist to have another ambulatory EEG placed.  Abby will wear the wires all weekend to record seizure activity.  Hopefully it will pick up what we have been seeing lately.  Abby has done better this week and has had fewer seizures.  Although this sounds weird, I hope she has those strange seizures during the test so the doctor can give us some answers and we can form a good treatment plan.

Happy Birthday Josiah!!

We have a three year old!

This year Josiah has...

Chosen Veggie Tales as his favorite movie

Psalty and Andrew Peterson as his favorite music (esp "Matthew Begats")

Learned to swim

Potty trained!!  

Loves to help Daddy tinker in the garage

Says he wants to be an astronaut

Perfected special "chores" to help Abby... bringing cans of milk, getting her toys

Graduated to a Big Boy bed

Prays that Abby will learn to walk and see

Funny things he says...

"Blanklet"  (Blanket)

"ipop" (ipod), "puter" (computer), "Mary and Jofus" (Mary and Joseph)

"Hey dad, are you in the know?"

"Mommy, is your hair brown like my poopy?"

When put in time out will cry and say  "mommy, will you pray for me?"

While sitting on the potty asks "Will you tell me a story?"... to stall

Asks select people if they have a baby in their tummy like mommy

Prefers "clean" cow to "dirty" cow for snuggling.  (clean cow is much dirtier!)

Named his rocking horse "paco".

Josiah's Birthday Movie

(pause blog music @ bottom of page first)

25 Weeks, and more seizures

We've made it to 25 weeks!  I am so thrilled.  Our baby's eyes might start opening by the end of this week.  Abby's eyes were fused shut when she was born and didn't open for a while.  

I remember a 25 weeker born soon after Abby who "lived" across the aisle from Abby.  She was breathing all on her own and was throwing the biggest and tiniest screaming fit I had ever seen in her isolette.  Her eyes were wide open.  It was almost unbelievable that a baby so small (probably under 2 lbs) could be so feisty and healthy.  

(For those who have given birth to a 25 wkr, I am by no means saying that all 25 wkr's are this fortunate.  I just like to remember that baby during this time of my pregnancy, encouraged by the gestational mark we have achieved!) 

I saw that baby again after Abby was discharged from the NICU and attending a therapy program in Knoxville for ex-preemies.  She was very healthy looking, just tiny.  

Abby definitely seems to be having new seizure activity.  I spoke with the neurologist's nurse today about what we have been seeing.  The doctor has ordered blood tests to check her Keppra and Zonegran levels.  We asked for another EEG but I'm not sure that will happen any time soon.  Hopefully we can get the labs drawn without too much drama this afternoon.

For those interested, the new seizures she is having are Absence seizures and probably Complex Partial seizures.  She has had Absence seizures before, but they have become more frequent lately.  When she has these it's like she is in a daze, "staring" off to the left and unable to respond to us for 10-20 seconds.

 The new seizure activity manifests itself through "automatisms" and rapid breathing.  (automatism:  unconscious and repetitive movements).  For Abby, it looks like she is gently bringing her hair over her face on the left side, over and over again while turning her head from side to side.  She also seems agitated during and after the seizure.  They only last about 15 seconds and are sometimes hard to recognize.

We think because she is having more seizures daily that her behavior is being affected.  She has been more "out of it" than usual, not cooperating during therapy or activities and just wanting to be left alone.  She's also been sleeping more than normal, and is often agitated when she is awake.

We are really hoping that we won't have to go back up on the Lamictal again.  But, of course we want what is best for our little sweetie, even if it means more drugs.  With Abby it's been very difficult to find that delicate balance b/w seizure management/drugs and healthy development.  

The drugs probably keep her out of the hospital, but they also have side effects which contribute to all sorts of set backs.

I'm watching her now as she sleeps off one of her tonic clonic seizures.  It really breaks our hearts.