Our Normal

Okay well much has happened since my last update. Emme had her esophageal surgery a little less than 2 weeks ago! This surgery was a very serious and complicated surgery. Surgeons had to scope her trachea to make sure she only has the one connection of her lower esophagus to her trachea. Once that happened they inserted a chest tube to drain any excess fluid after surgery. Then they detached the lower esophagus from her trachea and attached it to her upper esophagus where it's suppose to be. In order to do this, they had to deflate her right lung and go in through her chest under her right arm. I'm sure those details are probably a little off but you get the jist  Once little Emme was back from surgery she was on the ventilator for a few days so she could be on pain meds for the chest tube which Ive been told feels like broken ribs. Ouch! Emme was doing so well until a little snag totally unrelated to surgery.

Before she was taken off the ventilator she began to throw up every time they flushed her G-tube.(her g-tube is a tube inserted into her stomach that allows her stomach to drain and release air since she has a blockage between her stomach and intestines). They flush here g-tube to keep it from clotting and probably other reasons that I am unaware of.   Surgeons and nurses figured that her g-tube was collapsed or blocked so they replaced the tube and she was much better. Soon after, she was taken off the ventilator and given her swallow test. This tested required Emme to drink 20cc of barium so the surgeons could make sure her esophagus was healed and didn't have any leaks. She sucked the barium down from that bottle like she knew what she was doing! This was the first time she had ever been give a bottle mind you. No leaks! Woohoo she was freed of her chest tube and now has no tubes or tape on her face since she no longer needs a tube draining her secretions. The past two weeks we have been able to hold her much more and rock her to sleep as well as give her bottles with milk and water.

Things are starting to feel a little more "normal" I guess.  Who are we to define normal? Emme's anatomy is different and will always be different but that doesn't make it abnormal. It may not be normal to spend all day at a an NICU but it's my normal. I look back at what we have been through so far and I know I have grown more these past 9 months than I have in my entire life. I have never once been mad at God for dealing me this hand. This hand is the best thing I've ever been dealt, as a matter of fact. It has challenged me more than any test I've taken or practice or race I ever swam. I'm not saying that I've handled it perfectly, no way by no means have I done this gracefully but I will say that as hard as it has been to thank God for what he has given me I do it because what I have laying in the bed 5 feet from where I sit typing this now is the most "normal" thing in my life right now and she is perfect.

I recently finished the book "Bloom" by Kelle Hampton. It's the author's personal experience about giving birth to a beautiful baby girl with Downs Syndrome. Of course Emme doesn't have Downs Syndrome she was born with VACTERAL Syndrome and there were many parts of the book that I would break down and cry because I knew exactly what it feels like to be engulfed in certain moments whether they were epiphanies or moments of being scared of the ultimate horror of thinking you may lose you child. There are a couple of passages from the book I wanted to quote for you all that sums up a couple of epiphanies I have had during this journey.

"She said I was lucky-that I'd been offered a shortcut to what life is all about when some people search for it their whole lives and never know.  She said I had a secret- a secret to happiness and that, while people may look at me and pity me, in time I'd feel like I knew something they didn't.  "Someday, Kas", she said, "you'll feel happy in spite of their pity glances,  And you'll wish so badly you could let them know-that you could show them what life is about.""

"You know, through pain, you learn a lot about yourself- things you never thought you never knew you wanted to learn.  And it's kind of like those animals that regrow a part of their body- like starfish.  You might not feel it now.  You might not even want to grow, but you will.  You'll grow the part that broke off, and that growing, that blooming- cannot happen without the pain."

still so little

So, this Thursday there will be more growing.  Emmeline is having her Duodenum repaired.  There is a blockage, atresia, between her stomach and small intestines that is called duodenal atresia.  It prevents the contents of her stomach to move through her intestines.  This surgery is less intense than the last but still pretty serious.  She will still be on the ventilator for a few days but hopefully by Monday we will be able to feed her milk and allow it to fully flow through her entire GI tract!  As long as we can keep her healthy we just wait for her bowels to start working, which could take weeks, and for her to start taking full feedings and we will get to bring her home!  NO more surgeries!

Drew and I asked for your focused prayers one more time this coming Thursday as the surgeons work their miracles.  Thank you for all the support and love that has lifted up and our way.  We love all of you and thank God every day for our  answered prayers, and blessings that have seemed to be pouring in over the past two months.

Dont forget about Charlie!

God had another plan

What a weekend. As we were gearing up for surgery that was suppose to happen yesterday, poor sweet Emme was blindsided with pneumonia. I guess blindsided is not the appropriate word since our the doctor had been amazed that she went so long without an infection. So instead of recovering from surgery this week she is recovering from pneumonia. Like the title reads, God had other plans.

So after a collapsed lung and fighting 2 ventilators Emme is now trying to come down from her paint meds since finally coming off the ventilators yesterday. Babies sometimes go through withdrawals when they are on pain medicine. Even though she wasn't on the meds for a long time she seems to be having some mild withdrawal symptoms. Mainly just being very fussy. I will say I had a great mommy moment Yesterday. I had been holding her for the first time in 5 days for about 2 hours and I went to put her back in bed. She was kind of fussy so I gave her her pacifier which seemed to calm her...at first. After multiple attempts to sooth with a pacifier our nurse suggested that maybe she just wanted her mommy. Stunned from this since Emmeline has never really acted like she wanted to be held since she is a preemie , I gladly scooped her back up and she calmed right down. I hated that she had been upset but I loved that she just wanted back in my arms. Any mom out there reading this could surely understand being needed byyour baby for the first time. I guess in mom situations breastfeeding is a first instance of being needed and wanted by your baby but in my case since Emme can't breastfeed yet this was the first time I really ever felt needed. It was a great moment for me.

Emme will be on her antibiotics until about Monday and then should have her esophogus repaired by surgery sometime next week. Until then we will enjoy her being alert and acting like a true newborn, needing mommy and daddy and wanting her pacifier. It's things like this and changing her diaper that are taken for granted by so many. I would kill to hold bay baby in my arms anytime I wanted and not have to ask permission. I would gladly change a disgusting poopy diaper if my baby could even have a popy diaper. I would gladly stay up all night trying console my sweet angel if I could just sleep in the same building as her. These are all things I can't wait to do with our precious miracle of a child and I hope by reading this that anyone who has a baby at home will take a moment and enjoy changing a diaper or the lack of sleep just for one day and remember that there is an entire hospital full of children whose parents cannot bask in the daily "chores" of being a mom......Yet.

"Just as you received Christ Jesus as Lord, continue to live in Him, rooted and built up in Him, strengthened in the faith as you were taught, and overflowing with THANKFULNESS"
COLASSIANS 2:6-7

Whoa BABY!

I know that I am pretty behind on updating this blog but I finally remembered to bring the laptop with me to the hospital so I could update. 

I'm a MOMMA!  Yes, I have to keep saying that to myself in order to believe it.  Most everyone reading this probably already knows what happened but I still find it fun and exciting to write about the glorious entrance of our sweet (sassy) little Emmeline.

Emmeline Ann Perry made her entrance into this world on February 24, 2012 at 10:06 am.  If you have been keeping up with the blog you will notice that the date is only 4 days after I was discharged from the hospital for monitoring on Tuesday the 21st.    All my labs were clear and my blood pressure was fine when I was on bed rest at that point.  3 days later I began to feel uncomfortable after dinner and thought I just had eaten too much (trust me it happens more often than not).  After a sleepless and extremely uncomfortable Thursday night I began packing a small overnight bag because I knew that I probably needed to go to the hospital because I was in such pain.  At this point I hadn't been through any labor classes or even had my shower.  I was exactly 32 weeks.  After the longest car ride of my life we made it to labor and delivery triage at Vanderbilt around 7:00 or 8:00am.  After getting labs they loaded me up on a what they call Magnesium and wheeled me ot the labor and delivery without telling me what was going on.  I thought, "Great, here we go again.  They are gonna keep me here 24 hours, then tell me to go home on strict bed rest." Boy was I wrong!  All of a sudden a swarm of doctors and nurses were hooking me up and one very calmly doctor told me that my liver was failing and I had severe pre-eclampsia that has led to HELLP syndrome (look it up) and that they would be delivering Emmeline.  I burst into tears thinking it was way too early.  Thinking it would be sometime later on in the day I asked how long before I was to deliver and thet said 20-30 minutes!!!!!!!  Next thing I knew I was getting my epidural in the operating room and I was in total shock.  The next few hours after that are kind of a blur just becasue I was soooo scared and still in shock that I had just delivered my baby.  Drew went with her to the Children's hospital NICU while I was wheeled to recovery.  Because I was on the magnesium for 48 hours, I was unable to see Emmeline until they took me off.  The drug was to prevent me from having seizures.  Drew took many photos of her and would show them to me.  I felt pretty left out :(  All I wanted was to see my baby girl.
Here is a photo right after delivery of me and Emmeline.  This is a very special photo to me being the first time I got to hold my daughter.

So now the focus is solely on Emmeline.  Emme was 2 lb and 10 oz when she was born.  She was also 15 in long!  That is long for a 2lb baby!  She was born with VACTERAL syndrome which basically means there are many organ systems that have not developed properly.  Each letter stands for one thing or another.  She has duodenum atresia, esophageal atresia, a VSD (hole in her heart), hemivertebrae in her lower spinal column, and she is also has some missing or malformations of her arms.  Pretty scary to hear huh?  When you think about them all together then yes, its extremely scary but we look at it this way.  She will be having surgery in the next few weeks to repair her atresias, the hole in her heart has a high possibility of closing on its own, her hemivertebrae may never give her issues, and her arm malformations will be addressed and altered when she is older and will most likely have most function in both.  On top of this we are also happy to say that she has not been diagnosed with any chromosomal disorders!  She is a MIRACLE.  Quite a spunky miracle too. 

So here we are at 5 weeks.  Emmeline now weighs 3lb 11oz.  She is as big as the surgeons told us they want her to be to have her first surgery but we haven't heard when they will be performing it..  Since she is unable to eat and is receiving her nutrition through IV fluids she grows much slower than most babies do but nonetheless she is growing.  Ill try to keep the blog updated as the weeks go on.  There are so many little milestones that I want to share but I will just post as they happen from now on.  Her big milestone today was that she is in a big girl crib!:)  Next up...surgery! 

For those of you praying for us please pray for Emmeline's continued growth and weight gain  The faster she gains weight the faster she will be able to start feeding on real food.  Drew and I are very very nervous and anxious about her upcoming surgery but we know that with continued prayers and God's direction and comfort that everything will be wonderful.  Emme is a fighter first and foremost and she has the personality to go with it.  ( I type that as I just tried to put a pacifier back in her mouth and she made this terrible face and pursed her lips letting me know that she did NOT want it anymore!)    Now that is classic Emme.  She is also the sweetest little girl who likes to be held and snuggle into mine and Drew's chest with a little smile on her face.  I hope his blog allows you to get to know our daughter a little bit since we can't share her with anyone for a few more months.  She will be so happy to know that she already has so many that love her.  She is the best gift we could ever ask for and in my opinion the second best gift anyone can be given by God second only to His son Jesus Christ.

My sweet husband left me this simple yet powerful verse this morning in Emme's room and it really sums up everything...

" His joy is our joy"

John 15:11

Vanderbilt...my second home?

Oh my how every week changes here at the Perry household.  Here is just a "quick" update on how Drew, Emmeline and myself are doing.

Last Wednesday I was told that I couldnt go into work anymore due to the same issues with my blood pressure and I thought okay, I can work from home....wrong.  After a lousy weekend of just not feeling well I had an appointment with my doctros at Vanderbilt yesterday to have an ultrasound and also see how my blood pressure was.  Well a 9:00 am appointment turned into a 24 hour stay at Vanderbilt. My BP was way too high and blood work was slightly off so they wanted to monitor me overnight to make sure I dont have preeclampsia.  Not to mention the ultrasound started to show signs that my BP was starting to effect the amount of blood getting from my placenta to Emmeline, since BP affects how the blood flows through the umbilical cord.  After a night of good BP and good blood tests this morning, they sent me home on bed rest.  Basically the cure for all this is just being lazy which is hard for me but if that's what I have to for Emmeline then I can be lazy for a few more weeks :)  No walking, lifting, driving or standing very long.  Thank goodness for our new recliner!  Thank you Mom and Dad.  We really need our little biscuit to bake for another 4-5 weeks...I got some steroids for that....

Emmeline is doing about the same as long as my BP stays down.  I will say that Drew has been incredibly strong throughout this but is really beginning to stress.  I cant imagine how he feels having to not only worry about little Emme but me too.  Last night Drew stayed with me and slept in a tiny little pullout recliner and has done everything since getting back home, and I mean everything!  Not only that but is still going to work and coaching his soccer team.  Its so hard to sit back and feel so helpless watching him do everything but thats why God gave me Drew.   I thank God every second for him and I want everyone to know how special he is to me.  I couldnt do this without Drew.

I also have to say how wonderful our family has been through this.  Yesterday Erin and Rebecca (sister and mother-in-law) took me to the hospital for my checkup and when it turned into a much longer visit Rebecca sat with me until 2:00 while Erin took Grant, my nephew home and drove all the way back from Spring Hill to Vanderbilt  to get Rebecca when Drew got there.  Not to mention that Jay, my brother-in-law came home from work just to watch Grant so Erin could get back to Vandy.  Then later that night, since we had no overnight things, my parents drove all the way in to bring us some things at 7:00 and took Charlie in for the evening so we didnt have to worry about him.  Again the blessings are poured down over us constantly and no one will ever know how much these little things mean to us.

We are getting close and I am having my shower this weekend which I am soo excited for.  I cant wait to post pictures of the loving and close friends that are coming in to share this wonderful time with me.

I will start seeing a midwife next week a couple times every week and have a few other appointments lined up to keep tabs on Emmeline.  Right now the biggest sign I have that she is doing well is that she is a noodle and a half!  She moves constanly which means her brain is doing great and she is getting what she needs. Happy girl!

Again thank you for the love and prayers we are recieving daily.  Its what has gotten us through this far.  We love sharing our journey with every person felt compelled to keep up with us and hope that our faith and story is a testament to the power of God's mercy and love.  We cant wait to share our miracle with everyone.

30 Week Update

First I want to thank every single person who has ever said a single prayer for us or thought about us since our last post.  Drew and I have been overwhelmed by kind messages and wonderful, positive conversations of hope and encouragement.  So thank you from the bottoms of our hearts.

We did have another appointment at Vanderbilt today with a high risk OB and a genetic counselor who talked to us about possible genetic disorders.  We had a detailed ultrasound that lasted over an hour but we got some amazing photos of Emmeline and she even smiled at us in one of the photos!  She was being a noodle as always and earned the new nickname of "pretzel" too.  She kept wrapping her arms and legs around each other.  Very funny.

After the ultrasound we met with the OB who went over each photo with us and basically confirmed everything that we have already been told.  So not really any new things which we are very happy about.  For sure answered prayers!  We went in today expecting to have an amniocentesis but in the end decided against it.  We want to wait because we were told that there is a high chance that I will have to have amniotic fluid drained anyway later in the pregnancy so we made the decision to wait and see if it will be NEEDED later on.  

We also spoke to a genetic counselor who took a lot of time to explain what type of genetic disorders Emmeline would have a high chance of being diagnosed with based on the signs she is showing.  I will not go into detail with the specific disorders she could most likely or least likely have but the counselor did say that she most likely will have some sort of genetic disorder given her signs, (missing radius, double bubble, and heart defects).  Though we don't know specifically what disorder she will most likely have at this exact moment and time but knowing now or knowing in 8-10 weeks really is not a reason in our minds to risk the chance of delivering early.  The results of the amnio would not change anything or make a difference as to how our doctors deliver Emmeline.

So we know more about the genetic side of things as far as what to possibly expect and I think we feel a little better about it all.  The final thing we had to address was my own health.  Many of you know I have been battling high blood pressure the past couple of weeks and was admitted to the hospital for testing last Friday and luckily all tests came back negative for preeclampsia.  I have gestational hypertension which just means high blood pressure and no bed rest is needed just backing off from the physical side of work and any other stressful situations...sometimes taking a  break from life would be nice right?  I will be seeing a midwife from Vanderbilt once or twice each week to monitor my BP and the swelling.  She will basically be taking care of me while my OB will monitor Emmeline.

As far as upcoming appointments go we meet with our pediatric cardiologist on March 6 and our OB again March 7.  We was also told that if I have not gone in to labor by the 39th week, April 13, they will induce me and they would like to be able to schedule it anyway to have all surgeons and doctors ready to go.  I hope I carry to the 39th week since Emmeline is measuring about 3 weeks small at this point.  She weighs 2.5 lbs right now.

So thats our 5 hour appointment in a nutshell.  We are feeling about the same about everything as we were before and are finding peace about it all as more time goes on.  We love seeing Emmeline's little face as we go through all these ultrasounds.   Its amazing how much personality she already has.  Some of our favorite things to see are her little lips and nose which are distinctly like her parents :)  The techs like to comment on how pretty her little lips are.  That of course makes us proud.  Charlie, the other baby in our life is already beginning to sense that something is changing.  His guest room is starting to be filled with weird toys that make funny noises and all kinds of tiny clothes, and strange contraptions.  He has no idea whats coming!

As far as daily life goes Drew is still coaching and teaching when he doesn't accompany me to the doctor's appointments.  I am stepping back somewhat from coaching and doing more administrative things right now to keep the BP down.  I already miss being on the pool deck with my little ones but will hopefully be back by the beginning of the summer ready to go.

Again thank you so very much to everyone who reads this and has been so incredibly supportive  through this time for us.  I may not get around to responding to every single person but please know every text, phone call, and facebook message is taken to heart.

It's with God's direction that we press on daily and stay prayerful and positive for our little girl.
James 1:2-4

Prayers for Emmeline

So it's been almost 2 months since we last blogged about our sweet little girl.  Last time I checked in we were on cloud 9 learning that we were having a little girl.  We still can't believe that in less than 3 months we are going to be parents!  Time flies...

The reason I have procrastinated blogging about the pregnancy is because of some things we have learned about Emmeline and her development.  I plan on keeping our blog updated from now on but wanted to have facts before I let everyone know.  After we found out that we were having a girl we had a follow up ultrasound at about 23 weeks to check on Emme's left arm since it looked a little funny in our initial ultrasound.  She was holding it kinda funny.  Come to find out from specialists that she is missing her left Radius which is the larger bone in the forearm.  We are still unsure what exactly this will mean for her but her right arm seems to be okay and is measuring fine.  After that ulrtasound we were asked to have a fetal echo of her heart done and 2 weeks later we were given another blow. 

Her heart was sitting slightly to a different direction that it should but they found something else called a double bubble in her GI tract.  Basically it means that the upper part of her small intestine is too narrow or closing and digested food wouldnt be able to pass without surgery within hours of her being born.  We were also told that this does occur in 20-30% of babies born with Downs Syndrome.  Leaving the doctor this time was pretty hard.

Just this past week we were referred to Vanderbilt childrens Hospital to meet with a wonderful Pediatric Cardiologist to look for any heart defects.  The result was that there are no MAJOR defects found but one smaller one.  They found a hole in her heart that will most likely require open heart surgery within the first 4 months of her life.  We are going back to the cardiologist in March when Ill be 34 weeks and our doctor will be able to see everything more clear. 

The good thing is that all these things are issues that can be fixed with surgery.  We have an appointment with a doctor at Vanderbilt next week where I will have an amniocentesis to test for any chromosonal disorders, which includes the above mentioned Downs Syndrome.  Any appointment is scary and it has been hard to start thinking about things like bringing Emmeline home and decorating the nursery with all this going on but Drew and I are finally feeling like we are reaching the home stretch in the waiting and wondering game.  Of course nothing is certain until she is born but knowing little by little does help.

Our faith in Gods plan is what has been holding us together first and foremost but our close friends and family have also played a huge role in our positive outloook.  I want to be sure to mention all the positive things about this pregnancy.  Emmeline likes to do acrobatics during the ultrasounds.  All our techs laugh at her and have even given her the nickname "noodle"!  Its kind of sticking.  We get to see her more than most get to see their baby's before they are born and for that we are grateful.    Emmeline is spot on for growth and development and is weighing in at about 2.5 pounds right now.  They are even telling me I should still be able to have a natural birth!

There are so many things we have to be thankful for and this precious little girl and the experience we have been given so far is definitly one I can say is one of the greatest blessings.  It has taught us to not take things for granted and that we definitly can plan our lives any way we wish but God will ultimately have his way.  As you read this Drew and I ask for your prayers for Emmeline and our family as we get through this part of our journey.

I have been hearing a great Rascal Flatts song on the radio a lot lately and I feel it's Gods way in telling me thats its going to be okay and to just let Him fight for us and Emmeline. I really wanted to share the lyrics with everyone along with this verse.  Phillipians 4:6-7

Here is the video link http://www.youtube.com/watch?v=4fqPcnuVPR8&ob=av2e

Here are the lyrics:
It’s like a storm
That cuts a path
It breaks your will
It feels like that
You think you're lost
But you're not lost
On your own
You're not alone

I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won't let go

It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh, it finds us all
But we’re too small
To stop the rain
Oh, but when it rains

I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won't let you fall

Don’t be afraid to fall
I’m right here to catch you
I won't let you down
It won't get you down
You're gonna make it
Yeah, I know you can make it

Cause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I won't let go

Oh I’m gonna hold you
And I won't let go
Won't let you go
No, I won't