... Berklee Update :) ...

Okay, WOW, I'm doing a terrible job at this blog thing!  My intentions are good, I want to keep everyone infomed on the life of the Bonecutter's, but that is exactly what has gotten in the way, life.  So I wrote a blog on our third trip to the PICU, but somehow that didn't get posted.  It's probably a good thing because I just completely wore my heart on my sleeve on that one.  It was a rough day in the PICU and was starting to, just starting and never did, unravel.  So, now that it has been a month and some odd days since the last post, I will give you a summary of our life has been.
Berklee has been in and out of the hospital 6 times from August 13th to September 15th.  In that time span, we spent 23 nights in a PICU.  I lost count of how many times Berklee had been poked but I honestly wouldn't be shocked if it was triple digits now.  It seems like everyday was at least 5 times :(  Somehow she really was a strong little girl.  I never thought I could go through the things I went through until I looked at her.  If she was being strong through, I better be!

So here's how the hospital stays went:
August 13-16:  Cabell Huntington PICU - Start Propranolol 4 times a day every 6 hours :/
August 18-19:  Cabell Huntington PICU - Continue same medications, medication didn't have enough time to take full affect
August 21:  Trip to ER at Cabell Huntington
August 25-30:  Cabell Huntington PICU - Start Digoxin with Propranolol (Made things worse!) Discontinue Digoxin & ween off Propranolol, start taking Flecainide exclusively
September 4-5: Cabell Huntington PICU - Continue with Flecainide, add Propranolol back
September 5-15:  Transport to WVU Children's at Ruby:  Discontinue Flecainide and Propranolol.  Start Amiodarone.

It's so easy to just type that out like it was nothing, but that was the worst, lowest points in my life.  My sister gave me a journal called the "Berk Book" to keep all my thoughts in while going through this.  It was a great thing!  It got my emotions out and it's something that we can all look back on to see how far we've came and what we conquered.  I've continued writing in it every other day for the hopes that one day Berklee will want to read what I thought of mommyhood and of her.  Knowing how I feel about Berklee, I couldn't imagine her treating me the way I sometimes treated my mom.  It would crush me if Berklee back talked the way I did.  I just pray daily that Berklee knows and understands how much I truly love her.  I think it will take her having a child of her own to fully realize it, at least I know thats what it took for me.

The medication Berklee is on now seems to be working.  She is currently on day 15 of being SVT free and it's the longest stent she's gone with no SVT!!  We're so happy!!!  The medication, however, is the toughest drug out there and has some pretty nasty side effects.  She has to get labs, aka get blood taken from a foot or hand and a lot of it, every 6 months.  It can effect her thyroid, lungs, kidneys, liver, and skin.  We have to put sunblock on her anytime we go out because if she gets too much sun they say her skin will turn a blue color.  Talk about scary!  John and I still live a bit on pins and needles but we're getting through.

The last little tidbit to catch up on is what happened the evening we got home from Morgantown, our last hospital stent.  My mom, myself, and Berklee got home around 5 from Morgantown.  At 7:30, after Berklee's bath and while reading a Bible story, Berklee went into SVT.  I completely broke down.  I couldn't do it again.  I couldn't go to the hospital one more time and especially not 2 1/2 hours after just getting back from one.  John told me that this was not a time to faint.  Berklee needed me and I had to be strong.  I wanted to be so bad but just couldn't stop the tears.  He told me to go get a quick shower in case we had to go to the hospital and to pray hard while in there.  I prayed the hardest I could between the sobs.  It wasn't 5 minutes later John comes in the shower and tells me Berklee was out of SVT.  I lost it again, in the shower, just sobbing. I gave Berklee a quick, wet kiss and hurried up so I could talk with John and Berklee.  What John told me was nothing short of God's miracle!  He said that as soon as I went into the shower, he began to pray.  He said he had be praying all along to heal Berklee, but this time he prayed of surrender.  He said he told God, "You gave Berklee to us, you can take her away.  I'm completely surrendering Berklee to you, take you if you want her.  If it be your will, let us keep her.  But whatever it be, plus let your will be done."  He said as soon as he opened his eyes from prayer, Berklee was opening her eyes too from SVT!  We were both just speechless and knew it was only God that did this.  We immediately pledged to reading our Bible's more and promising God to raising Berklee in the best Christian home we could.  We started in Proverbs that night and for no reason at all.  When we got to Proverbs 3:23-25, we were struck again.  It was God showing us that he was with us through what he did with Berklee and then his word was backing it up.  I was telling John how I wouldn't sleep at all that night because I'd be scared Berklee would go into SVT again and this is what the scripture said ...  "Then you will walk in your way securely And your foot will not stumble. When you lie down, you will not be afraid ; When you lie down, your sleep will be sweet.  Do not be afraid of sudden fear Nor of the onslaught of the wicked when it comes."  Now, as we were reading, Berklee was just staring without blinking at the ceiling. There was no ceiling fan or fancy stuff up there, just a plain white ceiling.  She stared FOREVER and it wasn't just a stare but like she saw something.  We saw nothing, but it wouldn't surprise me that she saw her angel watching over her.  Her face was just so calm and content.  God taught me a lot that night.  It was such a life changing event for us.  Since that night of complete surrender, God has kept SVT away from Berklee and us.  

Anyway- I will try my best to do better with this blog.  I have tons of pictures of Miss Berklee but I will leave you with one from her 2 month pictures :)

I had to add one of Berklee in WVU Children's.  If you look close, you can see her IV in her head, but it's covered up with a bow.  I'm starting a project called "The Berklee Bow Project."  I'm going to be making bows for little baby girls that have to get IV's in their head.  I'm going to be putting Berklee's story and the scripture verses that got us through it in the bow boxes.  If anyone would like to help, let me know!  I'm planning on giving them to every hospital in the state :)

... Berklee's back at the hospital :( ...

So, I'm writing this a few days after the fact.  It's been beyond crazy in the Bonecutter household with Berklee's condition.  We aren't getting much sleep but we're still somehow functioning good and not killing each other haha.  I will tell you that our relationship with God has gotten so much stronger and alot closer through this.  I have never not once asked God, "Why Berklee?  Why us?"  It's all in His plan.  When we got Berklee home on Monday after her first hospital stay, we started to read the Bible a lot more, our Scriptures for Parents book, did a WHOLE lot of praying, and started loving Berklee on a whole new level.  We haven't eased up on any of those four things.  We continued to pray for good days and good nights for Berklee.  On Thursday, though, Berklee went back into SVT.  Now, our pediatric cardiologist said she would go in and out of SVT but to be patient with it and wait an hour or so before going to the doctor.  John had to go back to school on Thursday, so it was me, Berklee, and Ace when she went into it.  I stayed so cool and calm and thought "Hey, I can handle this!"  After an hour and half though, I made a trip to the pediatrician.  He then confirmed that she was SVT and tried to flip her, smash ice in her face, and gag her to get her to convert out of it.  She never did so, he's words I won't forget,  said ,"Don't poke along to Cabell Huntington, but don't drive like a maniac.  Just get Berklee to the Pediatric ICU as quick as you can and rush her to the 5th so they can start on her."  WHAT?!  First of all, I lose it there.  I don't want my baby back in the ICU, I don't want to see her all wired and IV'ed up again, and I don't want her made into a pin cushion like she was on Friday.  I drive fast to the hospital with tears thinking of the IV and praying like crazy that she'd somehow convert herself out of SVT.  We get to the hospital and rush up to the ICU and get her immediately hooked up to the heart monitor and guess what?  God is good - she converted herself!  Great news for Berklee!!  You go girl!  Of course, we still had to stay the night for observations and Berklee ended up getting an IV that I fought so hard for her not to get.  She ended up getting poked twice and handled it a lot better than I did.  We got to talk to the cardiologist and he said she looked fine and didn't need to be at the hospital but she had to stay the night. He said that she would have more episodes of SVT but to be patient and wait a few hours before going to the doctor.  We spend the night and John finally slept.  At home, he stays up to watch Berklee and make sure she is okay, but it finally caught up to him and he finally! slept.  We got out of the hospital Friday but not after some drama :( 
First, we ask for 2 chairs so that John and I could stay with Berklee.  We get told "It's policy only one can stay."  To which John replies, "I don't think you're getting her mother out of there and I know I'm not leaving so if I have to talk to managers or whoever, we're both staying."  Second, the cardiologist tells us we don't need an IV :) Yay!  but the resident comes in and threateningly says,"It is policy that all patients have IV's.  You either get the IV or there will be lots of paperwork and signatures due to your decision." !!!!!!  Ummm, yeah, don't threaten me at this state of mind mister!  And third, but by far the worst, which I'm still steaming over - her medication.  They were 30 minutes getting it to her at her 6 pm dose.  This medicine is something that has to be taken on the dot, so we're freaking out. Then at 12:10 am,  10 minutes late, the RN comes in to say that someone needs to go our house to check her dosage before they will give us her meds!  So I call my dad who rushes over to look but the key breaks in the lock at the house so he has to rush back to his house to get another key and finally after at hour we get the answer the RN needed to which he relpies, "We are going to hold this dose because her heartrate is low and we don't want to lower it more." Um, HELLO - She's asleep, it's going to be low!  We get that dose at 2 am after the doctor noticed she didn't get it.  Again, the resident screwed up.  But anyway - we finally leave and get home around 1 pm. 
At around 4:30 pm, John noticed Berklee get really fussy then crash out. This is a big sign that she has gone in SVT.  So we get out our stethoscope to check and sure enough her heartrate is going nuts :(  If you ever want to feel what eternity feels like, try waiting out your child's heart to slow down.  It's so scary!  So John has Berklee and he's reading Scripture to all of us while I clean because of the nervous energy I got while we wait and wait and wait for her heart to go back to normal.  Eventually, my family comes over just to be a suport system while we wait.  2 1/2 hours later - Miss Berklee converted herself out of SVT!  :) :) :)  There is no better sound these days than listening to her heart beat like it should. 
Needless to say, John, Berklee, and I are surviving this SVT the best way we know how., through the Lord.  He hasn't presented us with anything we can't handle and we're getting a lot stronger in Him through this. 

... Berklee's Hospital Visit :( ...

It's been a VERY rough past 4 days for John, Berklee, and myself.  If you haven't heard, we are in the Pediatric ICU at Cabell Huntington Hospital.  We arrived on Friday and, today being Monday, we're still here :(
It started out like any other normal day in life of Berklee.  John had to report back to school and Berklee was scheduled for her one month well baby visit at 10 am.  The night before Berklee was very fussy and pretty much unconsolable.  She wouldn't eat much and just either cried "hurt" cries or slept.  She ended up sleeping from 9pm - 5 am without waking.  That wasn't like her but I thought, well hey, maybe she's growing up!  Anyway - I met my parents at Tudor's for some breakfast before going to her appt.  She was so good just sleeping away and content with life and everyone took turns holding her.  We finally went to her appt and I expressed my concerns with the doctor that I thought Berklee may have an upset belly.  She checked her over and showed me Berklee's growth was great.  She's up to 8 lbs 10 oz. and 23 inches :) Mommy's big girl!  Then came out the stethoscope.  The doctor got a concerned look on her face and then asked a nurse for a heart monitor.  The monitor checked Berklee's heart rate and said 139-141, perfect.  But the doctor said there was no way that was right and had me listen to Berklee's heart beat.  It was the scariest noise I have ever heard.  There was no way of counting her little heart beat.  It was beating out of her chest!  She told me to get her to Putnam General immediately as she didn't know if we'd make it to Cabell Huntington in time.  This was the scariest thing someone could ever tell a mother.  "Go to this close hospital because if you go 20 more minutes down the road, your daughter may not make it." 
I don't remember driving to the hospital or even going through the doors but nurses and doctors were waiting on Berklee to get everything going on her.  They rushed us into a room and got us both on a bed to start her on heart monitors.  They then started an EKG on her to see if they could find the problem...and then they did another :/  They then started an IV in her.  This was by far the worst thing I have faced as a mother.  I was really hoping they would try to start one in her leg or arm, but in the head is where it went.  The screams she had just broke me down.  It wasn't a time for me to walk away from her because it was hard for me to handle, she needed me more then than ever so I stayed with her and tried my hardest to comfort her.  Berklee finally came out of her episode and her heart rate was stable for the next hour and a half as we waited to be transported to Cabell Huntington Ped ICU by ambulance.  We weren't allowed to transport her ourselves and really I don't think John or I were in a state to be driving anyway.
The ambulance finally got there and by that time, Berklee's IV had wiggled it's way out of her head :/  I was praying that she wouldn't have to have another one, BUT she did.  She look at her head again.  The first attempt didn't work, the second attempt didn't work, the third attempt didn't work, and the attempt in her hand didn't work, so I was done dealing with it.  I had had enough and told them I was done hearing her scream and cry and didn't want it done to her anymore.  Of course, she had to have an IV in her before we could go so I gave them one last try to get it in her little head and Thank God it worked!  My poor baby girl had tape and a needle where her headbands and bows go.  We were off and on our way to Cabell Huntington :)
Once we got to Cabell Huntington it was like a whirl wind.  We rushed here and dashed there and finally put in a room, 5103.  We had a little bed for Berklee and 2 chairs for visitors.  John and I would become real good friends with these chairs as they were our "beds" for lack of a better word.  When we got there they hooked her up to IV's and monitors and asked us a million questions.  We were still in shock so the easiest of questions seemed so hard to us.  Our first night was a good night.  Of course, we didn't sleep much.  Any time the monitors went off, we're up on our feet in record time!  I got up at 6 am to feed Berklee and as soon as she started to eat, off went the monitors and it was an SVT episode.  Her heart rate got up to 306 beats a minute.  They tried smashing cold ice bags in her face to startle her and it didn't work.  They tried stimulating the "bum" area and that didn't work, and they tried flipping her upside down, which didn't work so they had to give her some meds, which didn't immediately work.  They then gave her meds that stopped it immediately.  It broke my heart watch the nurses do all these "tricks" to her but she finally came out of it.  So we let Berklee sleep afterwards and she started to get hungry fussy around 10 am.  I went to pick her up and BAM! another episode.  I was just devastated that she was in another and finally broke down.  I felt like everytime I tried to feed her I made her go into these episodes.  They tried the tricks again, which I hated again, and finally gave her meds to snap her out quickly.  The rest of the day was pretty uneventful thank goodness.  Berklee slept alot, ate some, dirty diapers, played a little with us, and we watched the monitors like crazy! 
The next morning at 5 am as I was putting her to bed, she went into another SVT episode.  Her heart rate got up to 260 and instead of giving her meds, they wanted to try to see if she could come out of it herself.  So I tried to feed her and she did eat good but the only thing that got her out of the SVT episode was the ice pack smashing in her face :/  The rest of the day went great with no big events :) We finally went to bed and got up lots, paranoid as everything about our little Berklee.  We prayed and prayed for no more episodes, for God to lay His hands on her, and angels to surround her.  It worked :) God is great.  The next morning, there were no episodes!  We watched and waited and nothing! 
So, now it's Monday around 1 pm and we're waiting to get discharged.  It's been 24 hours since her last episode and the doctors seem to think the medicine she is on is working.  We have to give her medicine through a syringe 4 times a day at noon, 6 pm, midnight, and 6 am.  It's tough since she isn't allowed to feed until an hour after her medicine so she stays awake and gets kind of angry having to wait for food. 

Here are some pictures we took of Berklee's hospital stay:

Berklee in the ER at Teays Valley General - right after getting rushed in :(

Berklee in her new bed with her IV :( I hate it!

My baby girl with all her wires - Thank God she still finds a way to smile at us :)

Berklee some how sleeping through it all

The toy my dad got Berklee - can you tell she LOVED it!!!

... My baby girl :) Still happy! Love her to death!!! ...

Our First Trip :)

On Wednesday, John and I decided that since Berklee is now a whopping 3 weeks old, we needed to see how she would do on a trip since we love to travel so much.  Of course, if she didn't do so good John and I would have to revamp our lifestyles to accommodate our little lovebug, but if she did good, it was time to rock and roll with her :)  We left around 9:30am and made our way to Amish Country in Sugarcreek, Ohio.  Berklee decided to crash out the whole time.  So far so good!  Once we get to Amish Country, we start shopping up a storm.  What does Berklee do?!  Crash out in Grandma's arms.  I think both were content with life at this point.  This is what we did all day.  Shop, Berklee slept, and Grandma held her :)  Going great so far!!  We get some dinner and Berklee decided she wanted to eat then too.  I think I may have had 2 bites before Berklee was not waiting another second and let everyone know, but after she ate, she was....you guessed it....OUT!  We head back to the hotel and decide to just relax the rest of the evening.  We made a quick trip to WalMart where Berklee got a cute dress and headbands from Grandpa.  She looked adorable in them!  Once we got back to the hotel, Berklee decided to wake up and play :)  She stayed awake for hours just looking around and letting us look and goof off with her.  Afterwards, we all got our PJ's on and got ready for bed! 

This was the real test though.  Would Berklee sleep good like she normally does at home or would she not sleep at all and be restless since it was new surroundings?  We were soon to find out.  Berklee woke up at midnight, but John and I were still up so big deal :)  Next, she wakes up at 4 am and then again at 7 am.  She only woke up one time during the night!!  Better than home :) Whoo hoo...Berklee's a traveler just like her mommy and daddy :)  After her 7 am, she decided to sleep through breakfast but woke up around 10:30.  John and I thought "POOLTIME!"  Berklee absolutely LOVED the water!  She was kicking her legs around and dunking her head back trying to get her head in the water.  I think this is the happiest I have ever seen her!!!  Here's some pictures of Berklee's first trip! ...

... Berklee about to get in the water :) ...

... Piggies in the water!  She was loving it :) ...

... She just laid so still! ...

... Berklee pushing her head into the water :)  She was hilarious doing this! ...

... Berklee with Daddy after the pool :) ...

Needless to say, Berklee did wonderful and had a blast!  We're already planning another mini vacation for us to go on :)  Here are some more pictures from our trip...

... What Berklee did A LOT of :) ...

... Before bed, she decided it was time to stay awake all evening long! ....

... Waiting as we check out :) ...

... Zonked OUT! on the way home :) ...

Welcome To Parenthood!

So I guess this is our first blog and we're pretty new at it but thought it'd be a great way to keep our families updated on what we do..or really, what Berklee's up to :)  It's not really about us anymore and we're fine with that.  It's all about Berklee now!  I'm not too sure what exactly to blog, consider this writer's block, so I'll just let you know how parenthood is going.

Parenthood scared the beejesus out of John and I while Berklee was still in the oven.  We were nervous wrecks that we'd break her or make a wrong choice with her.  We've discovered that as long as we go to God for guidance, we can't ever make the wrong decision. I never really knew what to expect with a baby considering it's our first so it really was a shock the day we brought Berklee home.  It was sort of like "Okay, now what do we do?"  But, with Berklee, she showed us what to do!  When she was crying, she wanted fed.  When she was sleeping, she want to just sleep.  And when she made the scrunched up face, she was doing her business and needed changed within 5 minutes.  John and I learned quick :)  We soon discovered Berklee had many faces and she made lots of them while she slept.  Needless to say, John and I took up a new hobby of watching Berklee sleep.

John and I talk alot at these times of watching her sleep and wonder, "What on Earth did we ever do to be so blessed?"  It amazes us that God could give us something like Berklee.  We consider ourselves so lucky to be her parents and have her in our lives.  I knew parenting would change us, but I never expected it to change us so much.  The first few days home, I found myself being brought to tears just looking at Berklee thanking God for everything He gave me.  A perfect pregnancy, perfect labor and delivery, and a perfect baby girl.  I finally realized what life was really all about with a look at my baby girl.  Everything is brought into prospective with her.  We don't really think of ourselves anymore, just about what would be best with Berklee.  It's amazing all the things I've given up to do things for her or with her.  Life is complete now and John and I wonder how we ever managed life without Berklee <3