More Seizures...

So, the big bad seizures decided to return this past weekend.  She's had one every evening and morning since Saturday night.  They're the bad kind where she stops breathing and turns blue.  Scary to watch her go through for sure.  She's not showing any other symptoms, so we're not sure why.  She's a bit congested, but her lungs haven't sounded bad, and other than that we haven't been able to notice anything, so we took her to the doctor to get checked out today.  Her lungs and ears were clear, although the doctor noted some upper airway congestion.  They did a finger stick and her white blood count was up, so they also cathed her and got a urine specimen.  That showed some white blood cells in it as well, so they are culturing that overnight to see if it grows anything.  If so, then she'll start antibiotics.  

 

In the meantime, here are a few pics from a couple of weeks ago during a physical therapy session.  Notice how she falls fast asleep during PT.  We think she does it on purpose!

You're Invited!!!

Can you believe that next week our little girl will be ONE?!?  We are celebrating her and the Lord's goodness to us the Saturday following her birthday, and all of you are invited!  I know many of you are not local, but for those who are (or are somewhat local), we wanted to invite you to celebrate with us.  Click on this Evite link for details and to RSVP (so we know how many to expect), and we look forward to seeing you there! 

Update

Just a quick update (for Grandmom!).  :)  Not much new to report.  Waverly continues to do well.  She was off of her oxygen all day yesterday!  The first time in a long time!  We even put her to bed without it for a little while, but went ahead and put her on it when we went to bed since she was going a little too low to go without it by that point.  Her belly is still very distended and swollen, and we are trying to talk with doctors and troubleshoot why and what to do for her.  We switched her from Miralax to Milk of Magnesia to see if that helped (Miralax can be rough on the gut), and increased her Zantac to 1.5mL three times/day.  We are looking into other types of formula as well but haven't switched anything yet.  The Physical Therapist also mentioned kinesio taping her belly across it in an "x" pattern to help it stay in if it's a low muscle tone problem.  In the meantime, we are on the list to be called if anyone calls in to cancel an appointment with the GI doctor so we can get her seen soon.  If not, it will be late next week. 

We also got word that she was approved for the Tech Waiver, which is great news!  It means that we will be able to get some assistive technology equipment and home modifications for Waverly if and when we need them.  Other coverage remains the same though.  We also may get a little increase in nursing hours. 

Heart Thoughts-High Risk Appointment--Faithful Forever

Finally it was the day for the high risk appointment.  We went and had an ultrasound, then met with the doctor, and our world first began to really shake.  He explained that there were several things of concern.  He first drew a picture on a white board, and explained that there were two spaces in the brain called lateral ventricles.  The baby had extra fluid in these spaces.  But that's about all he knew.  He could say why, just that it was there.  It wasn't a large amount, but enough to be of concern, especially given my high level of amniotic fluid.  There were a few more things of concern too: the baby's eyes were close together, it was measuring small, the chin appeared recessed, and the abdomen was small.  Nothing terribly alarming by itself, but not quite normal either.  He suggested we have twice weekly ultrasounds and non-stress tests to check on the baby and keep an eye on things, and suggested an amniocentesis to see if we could find anything there.  

So, there were really no answers, just many many questions.  They felt that something was wrong with the baby, but they just didn't know what.  We had a few tears in the office, but were mostly able to keep it together.  However, as I got in the car and left that appointment (we had driven separately and met there), a song came on the radio that I'd never heard before.  It caught my attention from the beautiful piano music at the beginning, and at the very first few words, I knew God was ministering to my breaking heart.  "Be still, there is a healer..."  

That song went on to be played quite often on the radio, and we still hear it occasionally.  I marvel at how God was letting me know, even then at the very beginning of this journey, that He was there, that He is, and will remain, faithful forever. 

Heart Thoughts-First Concerns

Today marks one year ago that this journey really kicked into high gear.  I had had an appointment two weeks prior with my OB where I was measuring large, and the doctor had suggested an ultrasound at the following appointment (two weeks later) to just check on the baby.

At that appointment, they told me that I had extra amniotic fluid.  The doctor reassured me that most of the time, that doesn't mean anything.  But they did see a few concerns with the baby, including a recessed chin and possible club foot.  There was a quick mention about fluid and the brain, but they didn't say much about it.  Here is a picture of Waverly from that day.  Isn't she so cute?!?  (P.S. We hadn't found out her gender, so that's why I keep referring to her as "the baby".) 

Since there was some concern over what they saw that day, my doctor suggested I see a high-risk OB doctor and said they'd call me with that appointment.  They called later that day, and the appointment was scheduled two days later.  The speed with which that appointment was scheduled was my first indicator that something might really be wrong with the baby.  They don't usually get you in somewhere so quickly unless there's a reason to be seen right away.  I told my husband that I really wanted him to come along for that appointment, which he totally agreed with, and we waited for those two days. 

11 Months Old!

Yes, I know I am late in this post, but oh well!  Without further ado, here is Waverly at 11 months old!  

Even though I am pretty shocked, the little girl is still on oxygen!  She is off of it mostly during the day/awake periods, but when she naps and at night, she still needs it, anywhere from 1/4-1.5 litres.  You can tell she is still happy though! 

 She was able to celebrate her first Easter this month, and she was quite the cute little Easter girl!

 Here she is showing off her new wheels.  Since she's getting bigger, she's been using some different things as we try to figure out what will work best for her.  This is a stroller for special needs children called a Special Tomato stroller.  (Special Tomato makes all kinds of adaptive equipment for kids with special needs.)  She does pretty well in it, although she's still a bit small for it, so it's not perfect. 

 

We did order a wheelchair for her this month as well.  It will take a while for that to come in, but we are excited for her to get her big girl chair and be able to sit up a bit more when we're out and about.  The seat part also comes off and has a base that we can use in the house as well.  

Waverly also had a play date with one of her NICU buddies this past month.  Jocelyn was born the day before her, and stayed in the NICU for a few days.  Look at how big the girls are now!

 Waverly has been a little stinker with her cannula and often gets it out of her nose and tries to eat it! 

 She's demonstrating how she does it.  (I actually think it just happens as she's trying to get her hands in her mouth, but it's funny, except in the middle of the night!)

 She had fun dyeing Easter eggs with the big kids.

 And she posed like a little princess for her Easter pictures as well.

She's at about 19 pounds now.  We haven't quite gotten around to switching out her infant car seat for a convertible rear-facing one, but will hope to do that soon since she's about outgrown her baby one.  She's also quite heavy in it!  :)  We are so thankful that she's been doing pretty well after her sickness and hospitalization in March, even if she is still on the oxygen.  We continue to give breathing treatments and suctioning as needed, and she's been on the pulse ox continuously as well.  Her seizures have been pretty well controlled, although she did have a few a couple of nights ago. 

We are in the process of planning her birthday party for next month, and can't believe how quickly this year has flown by!  We love you sweet girl!

Baby's first Easter!

Have you ever seen a cuter Easter bunny??

Sweet Easter shoes.

                                       

Quick Update

I realized that I've been updating Facebook quite regularly, but not the blog as much.  I'm sorry for those of you who just check the blog and aren't on Facebook!  After her major screaming last Saturday, Waverly has been doing much better.  She's been quite a bit sleepier than normal, but at least not screaming.  She's started urinating a little better the past few days as well, although I am still suspecting she may be having kidney/bladder issues.  So we are communicating with her doctors about getting her adrenal/bladder functioning tested.  This is a big weekend for our girl, as it's her first Easter and she'll be 11 months old!  Check back soon for some very sweet pictures!  :)

Crying

On Wednesday evening, we noticed that Waverly seemed different.  She was extremely smiley (which was nice), but then would cry out a lot as well.  She was also very twitchy, and didn't sleep well that night.  She was fussier than usual on Thursday with a few crying episodes (she never cries), and overnight as well, but mixed with episodes of constant smiling and movement.  She had more crying episodes on Friday, and then on Saturday cried for several hours.  She also was very restless during the day and didn't nap much Thursday thru Saturday.  We finally just took her to the ER on Saturday to get someone to look her over and assess her.  They also tested her urine for a UTI, since the only other time she cried inconsolably like that was when she had her UTI.  That test came back negative. 

At that time we were thinking it was maybe something neurological, given the mixture between extreme happiness and bouts of inconsolable crying.   

The ER doctor said she thought it was gastrointestinal.  Since then we've noticed her urine output has been lower.  For instance, this morning she woke up dry, after her nighttime continuous feed.  We did decrease her rate a little overnight to see if that seemed to help, but she still got 300mL total. 

For her feeds today she got two boluses of Pedialyte and two of formula.  She's had one crying episode today that was pretty short. We're just not sure what is going on, so we are in touch with several of her doctors and will see what they have to say.  Please pray for her, and for us.  Today has been a much better day than yesterday, but I am still concerned. 

Heart Thoughts-Beginning Concerns

It was this day one year ago that concerns were first breathed over the baby that I was carrying.  It was just a routine office visit/checkup, and when the doctor measured my growing belly, she commented that I was measuring quite large.  I told her I knew since I wasn't fitting into any of my big maternity shirts.  She didn't mention more about it, but did ask that I schedule an ultrasound just to check on things in 2 weeks.  So, I scheduled the appointment and went on my way.  I don't remember being particularly worried or concerned for those two weeks, especially since the doctor didn't express much alarm or concern.  One year ago today I was living my life normally, very pregnant with my third child, tired from the normal strain that being pregnant and chasing two little ones has, working part time and doing childcare in my home part time, preparing the home for our new little one to come.  The weather was getting warmer, spring was springing, and it was all so very normal and right...