Fussy Abby at 34 weeks

Our sweetie has had a difficult couple of weeks.  In addition to the up and down temps (still not sure what is going on with that), Abby has been extremely irritable.  Some days have been very long!  A few of them she has been completely inconsolable.  As with most things with Abby it has all been a guessing game.  

Although she is on new seizure medication, which is a legitimate reason to be fussy, her symptoms seem to be linked to her J-feedings.  Every day lately when we connect her to her continuous J-feeds she starts her moaning and finger biting.  Long story short, she seems to improve when we stop the feeding and hold her upright.  This includes late night, middle of the night and early morning episodes.  Needless to say she hasn't been sleeping normally.

Yesterday we took her to the hospital for a fluoroscopy test of her tubes.  Basically they squirt contrast liquid in each tube (G and J) and take multiple x-rays.  It almost looks live as you watch the liquid going through the tubes.  The result was that her tubes are in their proper place, not imbedded in her intestines or kinked or coiled.  This test is not able to see tissue irritation which is what we suspect.

For now we are allowing the continuous drip to flow into her stomach through the G-tube instead of the Jejunum.  We've slowed the rate down and are praying that reflux won't plague her.

In other news, we've made it to 34 weeks!  The baby is clearly getting bigger and moves all the time.  The contractions keep coming and keep me very aware of how much time we have left in this pregnancy.  As I've mentioned before, I'll probably be stopping these meds in the next 2 weeks and this makes me wonder what will happen.  I'm anxious to talk to our doc this coming Monday about our upcoming plan.  So far she's mentioned scheduling the c-section at 39 weeks... if we make it that far.

It's getting exciting!

33 Weeks

... and counting!  As the contractions continue their persistent attempt to annoy, we are even more thankful for each day that passes.  

This weeks' OB appointment brought encouraging news.  After 2+ weeks of feeling like I have been in early labor it was reassuring to be checked and told that things seem normal for someone with a cerclage in place.  Although she didn't measure exact length with an ultrasound this time she said it felt ok.  The thing to worry about is cervical tearing from contractions (b/c of the cerclage), and the sign would be bleeding... which I've had none of so far!!

I think I've gotten the hang of working with the medications and knowing when it is worth the yucky side effects to take them.  They definitely do slow the contractions significantly.  I know our doc will tell me to stop taking the meds some time soon.  After a certain gestation the pills don't work, and also it won't be necessary to stop labor if it comes.  I'm guessing about 35 wks.

What is in a name?

Apparently for us, a lot!  We can't seem to decide on the perfect name for our little peanut.  There are a few favs floating around our conversations, but nothing seems to stick.  We've been praying that the Lord would give us the name for this special child.  Maybe we will just have to wait to meet him face to face before we know what fits.

This is just a funny video I caught last night after daddy got home from work.  It's mostly for family who like silly videos of our kids.

(stop blog music at bottom of page first)

32 weeks

This week has been a little difficult.  While we are celebrating reaching the 32 wk mark, we are battling pre-term labor.  Over the last several weeks my contractions have grown stronger and more frequent.  As I've mentioned before I'm popping pills daily to try to keep them to a minimum.  

Although I don't sit and time them very often, they seem to be coming about 5-15 min apart constantly.  The meds do slow them down and help make me feel more comfortable... except for the nasty side effects.  One of them causes my stomach to become very upset and I have trouble keeping down meals.  (for those who know me well, know that vomiting is one of my most hated enemies!)

The contractions keep me pretty uncomfortable most of the time.  There have been days that we weren't sure how much longer our baby will stay put.  Of course we are praying for at least 4 more weeks, but really we are hoping to make it to Connie's wedding (June 20)!  That is what we pray for every night.

The body is a funny thing, especially when it comes to labor.  So, who knows, I could feel like I'm in labor for weeks and have nothing really change.  Or, we could have another preemie.  I go to the doctor again this coming Monday and I'm hoping she will check things out so I can put my mind at ease during the rough days.

Thanks to those who are praying!!

Abby is having a hard week also.  The low grade fevers still come and go.  Today she feels yucky and just finished her 6th seizure.  So far her temp is 100.4 after Tylenol.  No other symptoms.  No signs of flu.  If this keeps up over the weekend I suppose we will have to take her in to see the pedi.  For now we are just watching the fever closely and trying to keep her comfortable and happy... which can be a big challenge!

31 weeks

(profile) 

I got another little glimpse of our tiny baby yesterday, but he's not so tiny anymore!  They were checking his growth and the status of the previous bleed.  There was no sign of bleeding!!  It has completely resolved.

(nose/lips- rest of his face is in the dark)

The baby measured one week ahead and looks great!  He's grown so much since our last scan.  She estimates he weighs about 4 lbs!!  It feels so great to finally be in this weight range. 

 

(little foot)

It seems that from now on I will be spending most days managing preterm contractions.  I'm taking 2 different medications as needed.  Some days I take it on a schedule, but have found that the side effects can be pretty uncomfortable.  Our doctor says that we have done and are doing everything possible to keep preterm labor from happening.  She reassured us that as long as there are no "baby house" changes there is nothing more we can do but wait.

On a different note, Abby has had some difficult days lately.  She is on her second week of Banzel and we aren't certain how it has affected her.  She has been more 'out of it' and Much more fussy!  She seems to be also having tummy/intestinal troubles that we try to manage... adjusting her dose and frequency of miralax and tweaking her feeding pump rate as needed.  It's really a frustrating guessing game with some days leaving us all drained from her moaning, finger biting and overall unhappiness.  

She continues to have multiple daily seizures which do cause lots of irritability, but we are hopeful the new medication combination will start helping this soon.

If only we knew for sure what was wrong and how to fix it.  This daily challenge continues to push me to my knees, knowing that our Heavenly Father truly is the only One who knows and can rescue.

Abby also continues to have on/off low grade fevers (100-101+).  She is not exhibiting any other signs of illness other than an occasional runny nose.  For now we are just keeping an eye on it as this isn't new for Abby.  Last Spring we experienced the same pattern with no answers.

Family Weekend

Our weekend in pictures.  We had so much fun in TN with our family!

Josiah's first fishing trip!

Cousins at the playground, soaking up some rays...

Norah ("Rosie")

Anna

Baby Jack

Baby Jack's adorable foot!!

Our growing family!

#1.  Abby struggling to sit...

#2.  Working harder...

#3.  Sitting tall!

Neurology results

This morning we all went to visit Abby's neurologist for our appointment to discuss her ambulatory EEG results.  It was a good visit with plenty of time to talk about all the details surrounding Abby's seizures.

A quick rundown of what we discussed:

- Yes, the new 'hair pulling, rapid breathing' behavior we have seen are seizure events

- Yes, every time we pressed the button while she wore the electrodes there was a seizure event happening

- Abby's brain activity during a generalized seizure (tonic clonic) is not what is typically found (epileptic spiking);  instead her brain goes into "runs" of very rapid firing.  This difference is related to her individual brain damage related to the grade IV brain bleed.

- Abby has short periods of epileptic spiking even when there is no clinical evidence of a seizure;  she said this is nothing to worry about, it's like having an extra heart beat every now and then.  She's more concerned about the seizure activity with clinical signs.

- There is asymmetry in the brain activity between the left and right hemispheres.  Some slowing on the right side.  She said this probably means most of her seizure activity is triggered by the right, temporal/occipital lobe area.

- Yes, Keppra makes people cranky.  Abby is on a pretty hefty dose, so it is very possible her sleepless nights and hours of fussing could be related to her medication increase.  

- Yes, we can discontinue the Lamictal.  

-Yes, we will need to try a new medication.  It's called Banzel and is new on the market.  She has several patients on it right now who have gotten very positive results.

The plan is to try the Banzel and slowly titrate up the dose for the next 6 weeks.  We will keep close track of Abby's seizure activity during this time and meet again June 16.  At that time Abby will have another ambulatory EEG done for 48 hours to see if there is any change.

She also increased the VNS settings.  It is programed for rapid cycling where the VNS fires on for 7 seconds and off for O.3 minutes.  So, it goes off frequently for short spurts.  I'm still trying to understand all the other numbers involved (mA, Hz etc.)

We are hoping to see some improvement with this new medication.  Although we would prefer to have Abby on less meds, seizure control is very important.  The doctor explained that it is like trying to find the right "recipe" for Abby.  Being on three medications that compliment each other and decrease seizure activity is better than being on less with poor control.  That made sense to me.

The next 6 weeks will be another test of sorts.  Some of the side effects from Banzel are loss of appetite and trouble sleeping.

We are praying that Abby's sleep will not be interrupted and that her body will adjust quickly to this new cocktail. 

Abby details and 29 weeks

This week we turn 29!!  Gestation that is.

Hopefully only 6 more p-17 shots, one more growth ultrasound and 11 more weeks to go.  Of course we are shooting for 40 weeks, but we would be thrilled with anything past 36!

I had a doctor's appointment yesterday where we discussed my contractions and such.  She checked the "baby house" with ultrasound and found all to be as it was before.  whew!  We just never know.  For most, contractions at this point can be totally benign and expected... but we know all too well that it can also mean a silent disaster around the corner.  This makes us all the more thankful for a watchful doctor who is willing to look into our concerns.

At 29 weeks all is well!

Our house is also slowly on the mend from the most recent cold.  Abby is still very congested, but fortunately has avoided any pneumonia from developing.  Her tummy has had lots of problems, but hopefully today we will see improvement.  I am starting to feel better too.

This Friday we will be meeting with Abby's neurologist to go over her EEG results.  They called a few days ago to tell us to increase her Keppra dose.  I'm not sure if this is coming from blood levels, the way her EEG looks or her most recent Big seizure.  We shall see.  It will be helpful to know more details about what her brain is doing during seizure events, but also with the different behavioral changes we've noticed.  I'm not sure if Abby's treatment plan will change much, but we are hoping to Not have to add another medication.

Last week we took a trip to Birmingham to see the glaucoma specialist.  Her eye measured exactly the same as it did 4 months ago, around 24.  He said he could live with those numbers.

She was such a brave girl as he poked her eye numerous times to get multiple readings.  I think she knows when it is time to be brave, because in the waiting room it was a different story!! She was definitely upset and anticipating that something uncomfortable was about to happen.

We will continue with the same two drops and will see him again in 6 months.  

As part of a requested evaluation for Abby through our school system, a teacher for the visually impaired (TVI) came for an assessment last week.  It turned out to be very helpful!  Some of these evals are just more of the same question and answer sessions with no new information for us.  This guy actually gave us some suggestions on pre-braille activities and things to work on toward better communication.  So, that was encouraging.