Good….Bad?

Today was the big day for the next ultrasound for Miss Karsyn.  This was going to be our tell tale sign of what direction we were going to go with her.  About noon one of the illustrious neuro fellows came by and said I’m going to go ahead and tap her….this might be the last time we tap…I’ll have to ask Dr. Dauser.  My reply was  “why don’t you go ahead and ask Dr. Dauser before you tap her”  Their plan was to hopefully start weaning taps…I was in no mood to have the tap for the heck of it today if they were going to start weaning taps tomorrow.  So off he went with his tail between his legs to find Dauser.  Two hours later Dauser came in.  The ultrasound showed some of the ventricles were smaller, but the clot had not decreased since last week.  So, not bad, but not good.  He said he thought we were less likely to avoid a shunt at this point but he would watch it for a few more days.  This is when I asked him to pull up a chair.  I asked for his long term plan and explained to him that if a shunt was inevitable…which he pretty much feels it is….then seriously let’s get it over with.  I, at this point, was not opposed to him taking her to surgery at that  moment.  I am so ready to get my baby girl home.  She is older and more alert and, in my opinion, will really benefit from day to day interaction with us.  I’M DONE.  And I know Dr. Dauser is amazing at what he does and wants to give her every chance to avoid unnecessary surgery but I needed him to understand our situation as a parent.   When we spoke last wednesday he had hoped to be able to wean the taps during the course of this last week….but he wasn’t able to do it.  All signs are pointing to a shunt…..

This is not the end of the world.  Yes it’s another surgery, but it will be a more permanent fix for Karsyn and she will be able to come home the day after the surgery.  hallelujah!! So the plan right now is they didn’t tap her today.  He’s going to check her fontanel's in the morning and quite possible put the shunt in tomorrow.  Of course we all know how things go.  And considering we’re planning for surgery tomorrow they probably won’t do it!!  But that’s the plan nonetheless!

So please pray for our little girl tomorrow.  Please pray for the neurosurgeons as they make decisions before, during and after surgery.  Please pray she come out of surgery and off oxygen quickly and that there are no complications that would keep her from coming home before the weekend.  And pray for Jeff and I as we sit in yet another waiting room, for our 6th surgery in 4 months!!  You would think we would be pro’s by now, but it never gets any easier!!! 

And pray that this weekend the Brewer’s are celebrating an  “Independence Day”  of our own!!!!

As promised

Pictures of Miss Karsyn!!!  Please excuse the socks on her hands! We can’t seem to keep her from scratching her face, so we improvised!!  Here’s our little princess in her matching bow and onesie!!!  Karsyn evidently has quite an entourage at TCH…..random nurses, therapists and doctors come by all the time to see what bow, hat and outfit she has on today!!  A sweet therapist (not Karsyn’s therapist) came by yesterday and said “I’m sorry to bother you I just heard I needed to come see her bow”  HAHA!! 

The little fashonista!

look at those sweet eyes!

She was definitely done with picture time!

And because we all know how much I love comparisons….

same bow….april and now june.   I think the bow shrunk!!    

  

there is a very sweet mom and son in our pod at TCH now and I got to share our story with her this morning.  She stared at me with tears in her eyes and said you mean I’m looking at a 24 wk miracle.  Yes, yes you are.  God is good!  It was fun to get to share our experience and listen to hers, just another example of  how God places people in your path along your journey.

And one more just for fun!!!

Mommy cuddling with her boys!

Heavy Heart

We have gained so many prayer warriors along our journey, and I know the comfort that comes from knowing beyond a shadow of a doubt that people are praying for you.  So I’ve decided to recruit my prayer warriors for a family and community  in desperate need. 

I’m not going to share details, but one of our high schools graduated seniors passed away very suddenly this weekend.  Such a terrible gut wrenching situation and my heart goes out to the family and all those affected.  Please pray with me for this family.  I cannot imagine the pain, fear and shock they must  be experiencing.  I pray that God holds them in His hands and provides the comfort and answers that only He can.  Also, please pray for the friends of this student.  Such a hard time and I know there are many people hurting and confused.  I pray that God comforts and uses this situation to Glorify his name. 

Thanks

Never say Never

 

I can remember a time not so long ago when I swore I would never be “one of those mom’s” that drove a minivan.  Why would I drive a minivan when there are so many suv’s out there to choose from?  Well, last night I became one of “those mom’s”!!  And for all you laughing out there right now go ahead and laugh!  I’ll be laughing at you when I’m putting my kids in through my sliding door and you’re squeezing car seats into a door when the person next to you parked a little too close!!! 

The Brew mobile!!

I’ll be making my swagger wagon video any day now!!!!

I know I’m behind in my updates so let me fill you in on the latest with Karsyn.  Last wednesday  they did the ultrasound to check on the blood clot.  The good news is the blood clot look SO much better.  Dr. Dauser was very encouraged at how much it had resolved in the last week.  So his plan is to keep tapping her this week and to try to maybe wean off the tapping to see if the fluid will begin to drain on it’s own.  They will do another ultrasound on Wednesday to see what’s going on.  He said he things he will know by wednesday whether or not she will need the shunt.  If she needs the shunt they put it in and she gets to come home a day or two later.  If she doesn’t need the shunt they will want to make sure the fluid is draining and then she will be able to come home.  Of course we know all too well that things could change, but right now it’s looking like she should be home fairly soon!  We’re so glad she’s improving and are hoping she won’t need the shunt.  Either way we’re ready to have her home to complete our little family!!  We have a special spot picked out for her in the brew mobile!!!!

Once again I’ve been a bad mom and haven’t taken my camera to the hospital….I’ll try harder but in the meantime here are pictures of the boys and of the twins nursery!!  I have a few more things to get but it’s pretty much complete!!

can’t get enough of those sweet cheeks!! Still off the oxygen….wooohooo!!!

sweet brother hugs!!!

first nap in his crib!

above their dresser!  I made the frames for their birth announcements my mom cross stitched as well as the “frames” with their pictures on them.  You can’t see them well, but these pictures have our hands on them when they were tiny…really puts  into perspective how far they’ve come.

fun chair, crosses, and on the left their shadow box.  I found this idea on another blog and loved it.  It has their first outfits, a tiny diaper and their name tags from their isolettes.  I’ll put a picture of  it once I get Karsyn’s name tag!

I don’t think I need to explain the next two!

Changing table and hamper.  As you can tell I had a TON of material left over from their bedding so my grandmother and I have been busy figuring out ways to use it all over the room!!!!

And the princesses bow holder I made her!!! 

I’m still looking for a prince charming painting!!  More to come but I wanted to show what we had!!!

Happy Fathers Day

3 posts in 3 days….please do not get used to this!!!!  I couldn’t let Fathers Day pass with out saying Happy Fathers Day to my dad as well as the amazing man I’m so blessed to have my children call daddy!!!  I’ve said it a million times so I won’t bore you for long, but Jeff is the most amazing father!  He is so involved and completely hands on.  All 3 of his kids adore him and we feel so lucky to have him in our lives!!

We started off the day with waffles (of course)!!  Grandanny was here and it was very special to get to start the day with my two favorite daddy’s!!!  Grandanny headed back to Dallas and Jeff, Brady, Kaden, Nana and I headed up to see Miss Karsyn.  After our visit we took naps and hung around the house….a great day relaxing!! 

A few pictures for my favorite father of my children!!

The boys enjoying a little dora while waiting on their waffles!!

Brewer party of 5!!  First family pic on mothers day…only fitting the next should be on fathers day!!!  You would laugh if you saw how many pictures we took….and this is the best one….oh well!

Daddy and his kids!   

Sweet big brother!!  He was so excited to get to hold Karsyn!!

I think daddy might have been enjoying himself! 

the twins!!!!

We’ve never really had much of a chance to put them side by side!!  Still a little awkward but cute to see them together!

holding hands?

bright eyed….and bored!

get his big head OFF OF ME! 

It’s funny how much bigger Kaden looks than Karsyn!! 

Happy Fathers Day!!  Hope your day was as good as ours!!!  

just for fun

not much to report, but I thought I’d put up a few pictures from the last few days!   The kids are doing well.  Karsyn weighed 7 lbs and 1 oz this morning!! Finally hit the 7 lb mark!!!  Kaden weighed 8 lbs 3 oz on Thursday!!  Little chunky monkey’s!!! 

The little princess in her ballerina socks!

Mom…how many times do I have to tell you…no pictures without my bow

much better!

 

Chubs hanging out in his swing!  Please don’t be jealous of the giant green oxygen tank behind him!!!  It adds so much to our decor!!

Brady always loves to take Grandanny coffee in the mornings when he visits.  Well, this morning he decided he wanted to have some coffee too…..so of course Grandanny gave him some!  He told us he “lubbed” coffee, but also said he never wanted anymore!!!

Grandanny and Brady having their morning cup of  Joe!!

  

 

Please keep little Karsyn in your prayers.  Pray that the blod cot continue to resolve itself and that she get to join us at home!  Pray for Kaden he has actually been off oxygen since Thursday evening.  We occasionally put him back on it for his feeds, but other than that he’s doing fantastic!!  We would LOVE to be able to tell those tanks good bye!!  

Due Date

That’s right today is the twins due date!  Wow….their due date and they’re 3 1/2 months old.  This has been such an unbelievable 3 months.  So many emotions, so many valleys, and even a few mountains!  A journey that many times I thought I would never make it through.  I can still vividly remember the days in the beginning when it was so hard to even get out of bed.  When I so desperately wanted to spend all my time at the NICU but everytime I got to the hospital I was filled with dread because I never knew what I was walking in to.  I wanted to call and check on my babies all the time, but every time the phone rang my heart sank for fear of the news I was about to receive.  I can still remember word for word conversations Jeff and I had with Doctors and each other about the best course of action for Karsyn and when enough was enough.  I can remember driving to the hospital every day wondering what had happened to my world.  Everything was upside down.  There was nothing normal, nothing familiar but there was one constant.  Through it all God was present and holding us in His hands.  He had to be, there’s no possible way we could have done it on our own.  Through all of this I have heard from so many people how strong we are and how inspired they are by us.  Please, please do not be inspired by me…..what is inspiring is how God has used our family to touch so many people.  But please make no mistake we could have done none of this on our own.  We were not strong….God made us strong.  God had to grab our hands and literally pull us out of bed!  God had to lift our heads and dry our tears and put a smile on our faces.  He has presented himself in so many ways to us.  In our family and friends, in the kind words, prayers and gifts from perfect strangers, in songs he plays on the radio and the doctors and nurses he’s put in our path. 

We are beyond thankful for this journey.  There was definitely a time not too long ago where I didn’t know if I would ever be truly thankful, but I am.  I heard the song on the video below on the radio a couple of weeks ago and I had a complete meltdown.  Josh Wilson sang exactly what I had been struggling with.  A way to express the feelings I was having as I looked back and remembered our struggles from just a few months ago.  God has taught us so much and our faith in Him has grown tremendously.  We know he has an amazing plan for our family and we trust completely that he will provide us with the means, patience and strength to deal with whatever our future holds. 

Thank you all for still reading the blog and still praying for our family.  I am so behind on thank you notes, but please know that no gift, or action has gone unnoticed on our part.  God used each and everyone of you in one way or another to minister to us and we know he will continue to do so in the future. 

Enjoy the video…I might have cried just a little making it.  We’re so thankful for our precious miracles on their due date!!

Still here!

We’re still here!!!  We’re busy going do Dr. appointments for Kaden, visiting Karsyn, and keeping up with Brady…but we’re loving every minute of it!  Nana is here helping us as we run back and forth and we’re definitely enjoying having a little help!!

Kaden is doing great.  Last week we cut back the amount of milk he got in every bottle to hopefully help with the reflux.  That worked great for a few days…until a few nights ago when Kaden decided he needed a bottle every hour and a half.  Of course he decided this in the middle of the night….and of course it was mommy’s turn for the night shift!!  When  you’re feeding every hour and a half, by the time you hold him for 20 minutes because of his reflux, put him back to sleep…clean up the bottles and other feeding paraphernalia….there’s not much time to crawl back in bed before the next feeding.  Throw having to pump in the mix and let’s just say I was pretty grumpy the next day!!!  SO we decided today (our pedi suggested) to start adding rice cereal to his bottles to thicken it to help with the reflux.  Hopefully this will help him and hold him off a little longer between bottles!!!  Other than that he’s doing wonderfully.  He’s starting to be awake more and is really quite alert!!  We are loving having him at home.  He had an eye appointment Tuesday and his eyes looked good so he doesn’t have to go back for 2 weeks!!

Karsyn is still doing great as well.  They did another head ultrasound this morning and although the clot is resolving unfortunately it is still there and they are going to continue tapping her for another week and will re-evaluate her next Wednesday.  So at least one more week without our little girl at home.  We are very glad she is getting the care she needs and that the doctors are monitoring her closely but we’re very ready to have her home.  Jeff and I obviously feel very torn between the house and the hospital and wish we could give everyone all of our attention….I’m sure with 3 kids we’ll struggle with this for years!!!  BUT as I’ve said many times before, if we’ve learned one thing through all of this it’s that God has an amazing plan for our family and the day Karsyn comes home and we’re together as a family will be perfect!!! 

A couple of months ago our bible study group read a chapter about whether or not (if we could) we would want to know the whole plan…would we want to know what God knows.  It was an interesting conversation and I didn’t, at that point, know what my thoughts were on the subject.  BUT now I know.  I’m very thankful I don’t know the whole plan.  I’m very glad that God…who is much more wise than I….only gives me what I can handle at the moment.  Even though we’re pretty bummed and want to know when Karsyn will be home and how exactly all this will play out I have faith God will orchestrate the next few weeks perfectly….and even though I like to think I can handle all the details and want to know the whole plan…I don’t. I want to trust the God that has carried me this far!! 

Without further ado here are some pictures!!!  Brady is having a blast with Nana and is getting a ton of attention.  I’m not playing favorites I promise ,I just keep forgetting to take my camera to the hospital…sorry Karsyn I’ll do a post  with just your pictures very soon!!!

 

Sweet, sweet baby blues!!  This was after bath time the other day.  I took the oxygen off for the bath and he did great for about 3 hours afterwards!!  Hopefully it won’t be long!! 

and the ever yummy cheeks!!!

bit brother making sure Kaden’s toys are safe!!

Nana and her boys!

My super babies!

This morning Brady and Daddy went down to Grandma’s beach house for a day of fun in the sun!!!  He had a blast!

Summertime blues

We don’t have the summertime blues around here….but I just thought I’d give Alan Jackson another shout out!!  We spent the afternoon warding off the summertime  blues!!! To celebrate Brady’s last day of school and thus our first real day of summer we got a slip n slide and daddy and brady had a blast!!!

Brady was a little unsure of what the slip n slide was all about at first……..

but he quickly figured it out!!

There was no stopping him!!  First of many backyard water activities for the summer!!!

Sweet boys cuddling before bedtime.   Brady really is very good with Kaden and loves to hold him and pat his back

sweet boys!

And little mister Kaden!  Love those baby blues!

nothing sweeter than a sleeping baby…of course this would be a little sweeter if it was in the middle of the night, but sadly all the sleeping pictures are only during the day :(

Poor little guy is having some major issues with reflux right now.  It seems to be getting worse which I’m attributing to the increase in the amount of milk he has with each bottle.  We’ve cut him back and are feeding him more often  but are in the process of discussing other options (such as thickening his milk) with the pediatrician.  Unfortunately our pedi is out of town right now.  Her on call partner is great, but I’m ready to discuss his issues with Dr. Isenhower because she knows him just a little bit better.  So please keep the poor little guy in your prayers!

Karsyn is still hanging in there doing great!  Daddy has been getting some quality time with baby girl  at the hospital this week!!!   I think she likes being the only one and getting one on one attention when we’re there!!