Sunday, August 16, 2009

New Home

We've moved!

Since adding little Levi to our family this summer it didn't seem appropriate to keep this blog address anymore:  "abbyandjosiah"

This past Christmas I received a very unique and fun gift from the Hull family:  a blog makeover and funds to make our past posts into a keep sake book.  

Please visit our new "Home" to see the makeover and continue following our family's journey!

Tuesday, July 28, 2009

Welcome to the family Levi!

(stop music @ bottom of page before enjoying the movie!)


It's been a busy couple of months, but some how, with the help of our wonderful GiGai (my mom) we have been able to keep up with Abby's many therapies and appointments.

Last Thursday we spent the entire morning at Children's Rehab and were able to see several of her specialists.  The dietician weighed and measured Abby then plotted her progress on the growth chart she's kept for the past 4 years.  To our dismay we found her to be falling off the curve.  

The past 3 years Abby has been growing slowly on her own personal curve, below the 3rd %ile.  As long as she steadily progressed no one worried about her small size.  Now she is quite a bit below even her own curve, and our dietician is concerned.  We talked about using a higher calorie formula, keeping her on the pump for more hours during each 24 hr period, and a few other ideas.

After also discussing Abby's symptoms of discomfort during feeds in addition to her continued stubborn fever we decided on a short-term course of action.  For 2 weeks we will try giving her smaller amounts of Miralax to help ease her tummy troubles.  We have also started her on a daily regimen of probiotics.  So far she seems to be somewhat better... but it's very difficult to know for sure what causes her hours of moaning/crying and finger biting.

The fevers continue to hit Abby just as we become hopeful that they have subsided.  Along with the fevers also come the dreaded seizures.  We have been giving Abby the clonazepam on the hard days when we fear the status (prolonged) seizures could strike.  So far so good.  It seems to help!

The whole fever dance has made us very weary.  Not knowing the cause but having to watch the effects it has on our girl can truly drive one to tears.

... and also to our knees

Tuesday, July 21, 2009

1 month old

Almost five weeks have passed since our little guy arrived.  He's starting to fill out some and is so very kissable!   He eats about every 2-3 hrs, and is making eye contact which we all love!  Little smiles sneak out when he is falling asleep.

We are slowly getting back into some what of a functional routine.  It's more like a messy juggling act!  I am finally starting to feel better, not having to take the pain meds as much.  Definitely enjoying not feeling sick anymore.

Funny Josiah story:

The other night Patrick told J to clean up his room and line up his shoes.  J ran out and proudly announced that he was done.  This is what we saw...

Thursday, July 2, 2009

2 Weeks Old

I can't believe our new little one is already 2 weeks old!  So much has happened this month with our move and Levi's arrival I haven't had much time to reflect and collect my thoughts.  While I recover from my c-section and try to slowly unpack our many boxes I hope to also put together Levi's first slide show/movie.  

My wonderful husband not only stayed standing during Levi's delivery, but managed to video AND capture some priceless pictures of our son!  I am so impressed with his many Skills!!

For now we just wanted to share a few photos of his first 2 weeks.

Thursday, June 18, 2009

Introducing: Levi Patrick

6 lbs 12 oz, 19 inches, born at 8:08PM on 6/17/2009

It has been quite a busy week.  We closed on our new house and moved in last weekend.   We then frantically unpacked and prepared to go to Connie and Matt's wedding on June 20th.  But to our surprise at 37 weeks and few days, Levi decided to make his entrance.  This followed Patty laboring all night Tuesday and Wednesday until we went in at about 6:00PM.  They are both healthy, Praise the Lord!!   I don't think we would have made it this far without help from Patty's mom!

Josiah wearing Daddy's helmet!

Tuesday, June 9, 2009

ER again

Abby woke up sick this morning with a fever (101.5).  After giving Motrin and her other meds she still went into a prolonged seizure.  We caught it as soon as it started and gave the Diastat, but the seizure was stubborn and wouldn't stop.  So, off to the ER we went.

It was 8 am so morning traffic was slowing us down a bit.  Thankfully Patrick had come home and was driving us, so we got there as quickly as humanly possible.  The staff were waiting for us and quickly escorted her to our usual suite.  Within about 8 minutes they had IV access and the meds were on board.  

All in all the seizure lasted about 35 minutes.  She needed two doses of the IV seizure meds and some valium, but after about 1 hour she was resting quietly.  As usual, all of the tests (chest x-ray, blood work, urine etc) came back normal.  She's sick with a virus again.

Fortunately we only had to hang out there for about 4 hours before returning home again.  The meds have made her extra aggitated, figity and grumpy.  Her fever remains above 101 despite Motrin and Tylenol.

We are praying for a more peaceful night for Abby.  The doc has ordered yet another seizure med to be added to her arsenal for the next 3 nights.  We may end up using this medicine in the future when we anticipate an illness coming on, to prevent these long episodes.

Abby has an appointment with her neurologist early next week and an ambulatory EEG. Not sure if she will still be having that done after this weeks' event.

Wednesday, June 3, 2009

Another Milestone

Last night I gave my 21st and very last Hydroxyprogesterone caproate injection!  It feels so great to be passing this milestone and leaving this weekly routine behind.  Now all the muscle knots and bruises can slowly disappear, leaving little evidence that I ever had to give myself these shots.

But of course I will never forget.  Studies have shown that this medication helps reduce the risk of preterm delivery in high risk pregnancies.  Thankfully we have been able to take advantage of new research, twice.

Monday, June 1, 2009

35 Weeks and our Baby Moon

I had my OB appointment today and all is fine.  Despite increasingly painful, draining contractions, no significant changes were found.  The baby's heart rate clocked in at 140 bpm and he was bouncing away while the nurse listened.  The cerclage stitch is still where it should be, doing it's job of holding down the "fort."

We discussed the plan for our pregnancy from here on out.  Basically we will continue taking the Terbutaline until delivery day.  She said that "text book" says it won't work past a certain point and will not stop True labor, but she has seen it work non the less.  Once it no longer provides the desired effect, we will deliver.  I felt relieved to get the green light to keep taking it until the wedding.  Hopefully this will enable our family to ALL enjoy celebrating with Connie and Matt on June 20th!

Because of the contractions + the cerclage + this being my 3rd c-section, we decided to schedule the big day for June 26th!!  I will be about 38 1/2 weeks.  If the contractions should earnestly kick in gear before then, we will meet our little peanut sooner.  Because of obvious reasons we are of course hoping to hold out as long as possible.

We'll see!

This past weekend Patrick and I had the most wonderful vacation!!  We called it our "Baby Moon"... Honeymoon before baby.  Grandma, Papa and Aunt Carolyn came to visit and kept A & J for us so we could get away... all 5 miles of it!  We stayed in the Westin in the Bridgestreet Shopping center just minutes from our house. 

(view from the court yard)

Our room was cozy and comfy with lots of extra pillows!!  Perfect for an uncoordinated, poorly sleeping pregnant person such as myself.  We enjoyed the pool, lots of sunshine and a relaxing hot tub.  We actually slept in past 7 am and relished in the quietness of being alone.

(slowly making our way down the Looong hall way to our room)

 (taking a breather from the Long walk... silliness)

Someone surprised us with a gift certificate to eat at Conner's which we thoroughly enjoyed! Of course we ordered expensive entrĂ©e's instead of the burger and salad we probably would have chosen other wise.  

(finishing up some yummy, chocolate cake!)

Thank you to the generous Giver!

We felt so blessed!!

Abby is doing much better!  She had a good weekend, which made ours that much better too.  The continuous G-tube feedings are going well so far.  She is getting Carafate (a prn reflux med that we've given in the past for flare ups) on a schedule twice a day.  Perhaps this is keeping her reflux quiet.  We still aren't sure what was causing her discomfort before, but hopefully giving her Jejunum a break from feedings will allow any irritation to heal and cool off.

The next step offered by her gastroenterologist was a tube switch and CT of her belly.  We opted to wait and see if this break will help her.

She has been more herself today and was engaging during feeding therapy.  As I type she is ASLEEP, which has not been the case for her afternoons lately.  Praise the Lord!

Thank you to those who have been praying.

Thursday, May 28, 2009

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!

Friday, May 22, 2009

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)

Thursday, May 14, 2009

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!

Saturday, May 9, 2009

31 weeks


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.

Thursday, April 30, 2009

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")


Baby Jack

Baby Jack's adorable foot!!

Our growing family!

#1.  Abby struggling to sit...

#2.  Working harder...

#3.  Sitting tall!