November 19, 2013

coming home from ACH

Thursday was a pretty easy day at Children's.  Our main goal was to get Olivia to take some formula from the bottle since she had done so well with Pedialyte for 12 hours.  We needed her to drink at least 2 bottles of formula successfully and the doctor would discharge us.  We worked hard but made it happen and by 2:30, we were beginning the process for checking out and heading back to Fayetteville!  Of course, discharge from a hospital takes a sweet forever so it was 4pm by the time we finally were in the car pulling away from Children's and making the journey back up the hill.

A few people had asked about getting the feeding tube since we were already in Little Rock.  We asked and really thought that would be best for Olivia since she lost about a pound in just 2 days and still isn't eating the amount she should.  But after talking to the doctor, we understood that it really wasn't safe to do it since Olivia had been so sick.  They basically concluded that Olivia had a horrible virus that causing the vomiting and stomach bleeding so she needs to completely heal before surgery.  Surgery could further complicate things and she probably wouldn't heal from the surgery as quickly if she had it while still fighting the virus.  So we will go back in early December for the feeding tube.

The ride home was uneventful, thankfully, and Olivia slept the entire time!  I think she was happy to be back home!

The conclusion from all the tests from the week didn't give us a lot of information as to why Olivia was so sick.  All the doctors were able to conclude was that she had a horrible virus and the throwing up caused some stomach bleeding.  So we don't really know what happened last week.  We have several appointments this week with her doctors here to follow up and do some more blood work just to make sure everything is back to normal.  Please keep praying for complete healing and that Olivia will stay well until her feeding tube surgery.

It was so amazing seeing God's hand over us our entire time at Children's.  We know we were covered in prayer by so many friends and family and we are so grateful.  We had friends left and right offer their homes and beds for us while we were in Little Rock and so many people offer to help with Hannah.  It is truly humbling to walk through something so scary but know we are never alone because of all the dear friends and family members God has placed in our path.  God is so good and faithful to answer prayers when we don't even know what to pray or what we need.  We are thankful to be home and recovering!

{two previous posts about our week at ACH here and here}

the day at ACH

Wednesday started with more tests and a visit from the team of doctors and residents that would be caring for Olivia.  The doctors and nurses are seriously so amazing at Children's!  Because Olivia has epilepsy and needs her medications, her case was quite complicated.  And at this point Olivia had basically been about 36 hours without her seizure medications so the doctors needed to figure out something quick.  They came up with a plan to give her some new seizure medications by IV and if she could go 12 hours without throwing up, we could try her oral medications again.

Praise the Lord she did go 12 hours and we were able to FINALLY get some good medicine in her.  This seriously began to make all the difference in the world!  By Wednesday night, Olivia was beginning to act like a new baby and we were so happy!  She even got a bath and seemed so happy to be clean! :)

We did get test results back and there wasn't anything of major concern.  The doctors were still a little puzzled as to why she was throwing up so much and so violently.  The only thing that did show up on one of the xrays was a small spot on her right lung.  It wasn't pneumonia but probably could've quickly turned to that had we not already been in the hospital.  So the respiratory therapist came and did a little work on Olivia's lungs to break up whatever could've been collecting in her lungs.  Thankfully we caught it early and nothing major came of it.

Hannah, my parents, my sister and Jason's parents all spent most of the day with us.  It was so great finally getting to see Hannah and have the support of our family there.  Hannah was pretty happy to see Olivia too.

She began taking a bottle again, only Pedialyte for 12 hours to make sure she could keep it all down.  She took a few ounces and went to sleep.

Around 1am, the nurse noticed Olivia's IV had fallen out as she was trying to give her some anti-reflux medication.  This could have been a really bad thing because Olivia was relying on the IV fluids to keep her hydrated.  So around 2am, I had to wake her up and get her to drink 2-3 ounces of Pedialyte to prevent having to put the IV back in.  It took an hour of working with her to drink but she did it!  We all went back to sleep until about 5:30 when we had to try the bottle again.  This time Olivia took 4 ounces!  This was huge because we knew she was getting better and we were hopefully on the right path to going home.

Get caught up on are hospital journey here

November 18, 2013

trip to the ER and ACH

If you follow me on Instagram or are friends with us on Facebook, you probably saw our updates on Olivia this week.  We gave bits and pieces of the story because it is long and complicated but I wanted to record the full story so I don't forget all the details of God's provision and healing hand on our sweet girl over the past few days.  It was a LONG week but we are praising God tonight that we are all home under one roof and Olivia is on the road to full recovery.

It all started quite suddenly on Tuesday morning.  Olivia had been having perfect days....eating well, sleeping great and showing no signs of being sick.  She woke up Tuesday morning with a smile on her face and we started our day as usual.  However, as I was making her morning bottle, things quickly changed.  Olivia began throwing up, which isn't highly unusual in the mornings, so I didn't think too much of it until it continued for an hour and turned bloody. (Sorry for the graphic information...this just explains the severity of the situation.)  Once that happened, I text Jason and headed to the ER.  We got there and were immediately rushed to a room and I lost it.  I knew it wasn't good as I looked at the nurses' faces and how quickly everyone was moving to get Olivia in.  Thankfully my dad also met us at the ER and took over so Jason and I could answer questions and tell them all about Olivia, which takes a sweet forever when people don't know Olivia's history.

{And I have to say here that God was SO faithful to provide us with AMAZING care in the ER.  One of the nurses is the mom of one of Hannah's friends and the doctor in the ER on Tuesday is our next door neighbor.  We couldn't have planned it more perfect if we tried!  I am always amazed at God's hand in the details, especially things I wouldn't even think about!} 

Ok, back to the ER....Olivia was quickly hooked up to an IV, blood taken for tests and given fluids and some medicine to stop the vomiting.  After a couple of hours in the ER, the constant vomiting FINALLY stopped and Olivia got a little bit of rest and relief.  Because Olivia's case is so complicated with all her seizure medications, the doctor had to call Children's Hospital for consult on the best plan of action to care for her.  At this point Olivia hadn't had her seizure meds in about 15 hours and her seizures were becoming more frequent.  We tried to syringe her the meds but she couldn't keep them down.  So after a few more phone calls to Children's and our neurologist, it was decided that Olivia needed to be cared for at Children's Hospital.  So we quickly made plans for a trip to Little Rock.


Olivia and I boarded Angel One with the flight team, while Jason hit the road to meet us at the hospital.  It was one of the scariest moments of my life going by myself but I knew we were doing the right thing.  Thankfully, my sister lives in Conway so she and her husband met me at Children's so I didn't have to be alone.

Jason arrived shortly after we got there and the nurses and doctors didn't waste anytime getting Olivia's history and started ordering tests, even though it was 9pm.  We prepared ourselves for no sleep and began a night full of blood draws, IV fluids and xrays.




The nurses started the night trying to get some blood for a few tests.  Unfortunately this was much harder than anticipated because Olivia was now basically dehydrated because she had gone about 24 hours with eating.  Though she was hooked up to IV fluids, it wasn't enough to compensate for what she had lost.  So after about 6 pricks, they decided to wait a few more hours to get her more fluid.  So around 1am, we headed to xray for some chest and stomach xrays.  If your infant has ever had to have this done, I'm sorry. It's awful!  We've done these before but it wasn't when she was already super sick so this was a hundred times worse.  It is basically a plastic tube and the babies pretty much hang with their arms above their head.  Not fun for anyone.  Thankfully it goes pretty quickly.

After the xrays were over, we headed back to our room and tired to squeeze in a few hours of sleep.  But since Olivia was considered mildly critical, we were placed in the intermediate ICU so nurses are in and out of the room every hour to two hours for vitals and blood draws.  Fortunately, we did manage an hour or two of sleep before everything started again about 6am on Wednesday.

November 5, 2013

update on Olivia

So it's been a small forever since I blogged and I have fully intended to get caught up many times but every time I sit down, I'm just not sure where to begin.  SO much has been happening in our world over the past 6 months and I do hope to get caught up because there are lots of things I want to remember. :)  But before I get back to the past 6 months, I want to give an update on Olivia and ask for some prayer.

Jason and I made the difficult decision to get a feeding tube for Olivia in a couple of weeks.  It was NOT an easy decision and was a result of lots of tears, prayers and conversations with various doctors.  The confirmation that a feeding tube would be the best for Olivia came after an appointment with her neurologist revealed that she hadn't gained any weight in a month.  We know Olivia had gained weight but because she throws up almost daily and her intake hasn't increased in a few months, she also quickly looses weight.  So we know it is the best thing for Olivia's growth and development but it is never easy on a momma's heart to make such a tough decision.

Our journey for the feeding tube began this past week with a swallow study and upper GI.  Thankfully we were able to do this test locally and not travel to the Children's Hospital.


Olivia was a CHAMP.  She struggled at first to take the barium bottle but thankfully Jason was there and got her to drink what she needed.  During the x-rays, we immediately learned that Olivia has severe reflux.  This came as a complete shock to us because when we had her last swallow study 6 months ago, they didn't think there were any signs of reflux and we took her off reflux medicine and began adding thickener to her bottles.  So that finding alone can explain the throwing up and constant gagging.  We won't get the final results of the upper GI/small intestine scan until this week when we meet with the surgeon who will be placing the feeding tube, hopefully next week.



We are asking for prayer over the next few weeks because this is all new and a little scary for us.  We have no idea how Olivia will do after anesthesia, especially with her seizures.  We also have no idea what life will look with a feeding tube.  Though we will not stop feeding her by mouth, the tube is solely for medicine and supplementing on the bad days, it still makes me nervous that she will regress in her eating.  Prayers will be greatly appreciated in the coming weeks!

April 4, 2013

Olivia's eating

Several of you have asked about Olivia's eating the past few weeks and I realized I never blogged about her swallow study that we did in March at Arkansas Children's Hospital in Little Rock.  After consulting with the nutritionist, speech therapist and developmental pediatrician at the UAMS Center for Children in early March, it was decided that it would be very beneficial for Olivia to have a swallow study done so we could know for sure if she was aspirating or not during feedings.  Aspiration can lead to lots of other eating and digestive problems so the sooner we could get that figured out the better.  Olivia had one swallow study during her time in the NICU but there was little to no signs of aspiration so deep down in our hearts we knew that wouldn't be an issue but we needed to rule it out to figure out how to help Olivia gain weight.  So off to Little Rock we went.

Fortunately, Jason has a flexible job and was able to go with us.  And we got to stop in Conway and see my sister.

This girl wasn't sure what to think about this big hospital!

And she gave us quite the challenge to get her to eat during the actual swallow study.  Swallow studies are quite difficult because of the positioning and surroundings in the x-ray room.  Olivia was basically sitting up and I was standing in front of her attempting a bottle.  The first try was a complete fail.  Olivia was screaming and not even wanting to try the bottle.  Unfortunately, Children's books swallow studies pretty close together so we only had a window of about 15 minutes to try.  After 10 minutes the nurses suggested we just give her some time and maybe they could squeeze us in again after the next baby.  I was SO discouraged.  We had just driven 3 hours and it wasn't looking like we would even get to do the study.  Jason sent out a prayer plea to several friends and family members while I met with the speech/feeding specialists.  And thankfully my sister spoke up and asked for another chance at the swallow study.  We were determined to not come back to NWA without it! :)  Thankfully we had about 10 minutes between two other tests for the doctor to see us so we were able to try one more time.  And the second time, Olivia did phenomenal!  She drank like a champ and didn't even fuss in the chair.  And PRAISE THE LORD there were no signs of aspiration!  In fact, we only had to do one round of thickness (which was actually just her milk with no additional thickening agent) to get the answer we needed.

We finished a little interview with the feeding specialists, got our discharge papers and were on our way back to NWA.

Sweet baby girl was completely worn out!  She did great on our day trip to and from Children's Hospital and we were all so very thankful to be home and with great news!
 
To those of you who have been praying, THANK YOU!  This has been and will continue to be a long road for Olivia but thankfully we are on our way to finding answers to Olivia's eating issues.

March 28, 2013

she's growing!

Well, Olivia is finally growing at an acceptable rate for her doctors and we couldn't be more excited!  Though she has always shown weight gain at doctor appointments, it was never a significant amount of weight.  But this week we had two appointments, one with Olivia's pediatrician and one with the neurologist, and both doctors said they were pleased with her growth over the past few weeks!  Seriously, I was so happy to hear that they were pleased with her weight....those words haven't been spoken about her growth/weight since we left the NICU.  I may have shed a few tears of joy while driving home because I finally feel like we are on the right track with Olivia and getting her figured out.
I think this girl is finally figuring out what the doctor's office looks like.  I've gotten this look several times before doctor appointments this week.

In fact, just over a month ago, Jason and I had the conversation that we would be okay with getting a feeding tube for Olivia because feeding times had become so stressful for all of us.  There were many days that I would be in tears with how long it was taking Olivia to eat, how much she was throwing up or just how difficult it was to feed her.  Most of Olivia's feedings were (and some still are) done with us bouncing on an exercise ball in the middle of our living room just to keep her calm so she can stay focused on eating and not just crying. (Special thanks to some precious friends for this tip when dealing with a fussy baby!)  Fortunately, we have doctors and therapists that didn't give up on us fighting to not get a feeding tube and we changed formulas again but found something that Olivia tolerates well and seems to enjoy.  With the encouragement and support of Olivia's doctors and therapists, we have FINALLY reached a "normal" baby daily growth rate and Olivia is slowly making her way back on the growth chart, weighing in at a whopping
11 pounds 14 ounces and 24 inches long.

precious clean baby :)

So our hard work is beginning to pay off and though we continue to struggle at times to get Olivia to eat, things are SO much better than a month ago.  I finally feel at peace and at ease with her growth and I'm not constantly worrying about her eating or weighing her all the time.  Though we do have to still increase her calories and keep track of how many ounces she is getting each day, we can rest a little easier and that makes feeding time more enjoyable for all of us.

March 18, 2013

another EEG

Last week Olivia had her fourth EEG since birth.  It was a bit of a last minute thing because Olivia began showing signs of seizure activity a few weeks ago and despite an increase with her current seizure medication, we began seeing seizures more frequently and for longer periods of time throughout the day so the neurologist wanted another EEG to better assess what is going on in Olivia's brain as she is growing.

Fortunately, we were able to do the EEG locally and we got to have the same tech as last time so it was a familiar thing for all of us.  Most of Olivia's seizures occur when she is waking up so the tech wanted her good and asleep so we could wake her up and watch what happens.  This girl was snoozin!

And was not too happy with us when we woke her up....
She had one of her seizures during the EEG so the tech got a really good picture of what happens, both in her brain and physically. 
 
We were told they would send the EEG to be read in Little Rock and then we would hear back from our neurologist locally by Thursday.  Well, I got a call Wednesday late afternoon from the nurse that the neurologist needed to see us Thursday morning because Olivia's EEG was definitely showing signs of seizures.  Even though the EEG confirmed what we had been seeing at home for a few weeks, hearing that we needed to see the doctor as soon as possible sent Jason and I into a bit of a tizzy Wednesday night.  Fortunately, we had small group that night to distract us a little and also to be prayed for by our amazing friends.
 
                                      
So Thursday we went to see the neurologist and Olivia wasn't too excited about being back at the doctor. Ha! 
 
We kinda went in with our minds set on the worst case scenario so what we were told wasn't too horrible.  Olivia is having infantile spasms, which is basically a form of epilepsy.  Of course we have known since Olivia's birth that she would be at risk for seizures but we were just praying that with medication, seizures would never happen.  However, our neurologist told us that the type of seizures Olivia is having is very common for babies who go without oxygen for a period of time during birth.  And it is definitely common for these types of seizures to manifest 4-10 months after birth so with Olivia being 6 months old, the neurologist said she wasn't surprised this was happening.  We have started a new type of seizure medication that will hopefully "cure" these infantile spasms and we prayerfully will never see them again.  The risk of the new medication is peripheral blindness so we are praying hard that that doesn't happen to Olivia.  And after only three days of this medication, we are already seeing a reduction in Olivia's seizure activity so we have full confidence that this medicine will take care of these seizures and hopefully Olivia won't be on these medication for more than a few months, which will also reduce her risk of peripheral blindness.
 
Even in the midst of all the unknowns about Olivia's future, we know that God is good and His plan is so much greater than ours...and that is the truth that we have to cling to to make it through each doctor appointment with Olivia because it is so difficult as parents to know there is nothing we can do to "fix" Olivia....it is simply our job to love her and trust God with her life.