What a week!

And I’m glad it’s over!!!  Little Miss Karsyn had her reservoir put in today.  The surgery went well and she’s doing pretty good.  She’s still very groggy……actually she’s pretty much out!!  It took her quite a while to shake the anesthesia after her ROP surgery on Wednesday, so I expect the same from her surgery today.  Once she wakes up a little they will start feeding her and get her extubated (I have no idea if this is how you spell this and spell check offered no suggestions so there you have it!!)  as quickly as possible.  She’s such a little fighter that we know she will rebound quickly and catch back up to her brother despite having been set back for 3 days!!! 

They were actually able to get 20 cc’s of fluid out of her ventricles during the surgery.  That’s almost an ounce of fluid that was hanging out in her little head.  They expect to get more over the course of next week as they come in periodically to “tap” the reservoir.  Releasing this fluid has already made a huge difference in her head and I’m sure it feels better for her.  The reservoir is a little bubble right under her skin.  We haven’t seen it completely as it was still bandaged when we left, but it will stick up a little on the right side of her scalp.  NOT to worry….I’ve been assured I can put headbands and bows over it!!!  Of course that made it completely necessary for me to come home tonight and order her more bows!!! 

Kaden is still doing great!  He adjusted wonderfully to his change in CPAP settings and they’re talking about moving him to canula at the beginning of next week as long as he stays stable over the weekend.  An Occupational Therapist came by yesterday to start working with him a  little.  She said he seemed to have great muscle tone and strength and seemed to be right on track with his sucking reflex which is great news for bottle feedings and nursing in the next few weeks.

Thank you so much for all of your prayers and thoughts the past few days.  They’ve definitely been a little stressful and Jeff and I are exhausted, but as always we definitely feel the comfort of sitting in God’s hands.  We have felt that peace that comes from knowing we (and our precious babies) are being prayed for constantly.  We are surrounded by amazing people – and are so incredibly thankful. 

Pictures tomorrow I promise!!!

too much good news

we got so caught up in all the good news of  late that we almost forgot how this lovely life in the NICU really works!  But don’t worry….we were reminded today and abruptly brought back down to reality!! 

Karsyn had her follow up eye appointment this morning and it wasn’t good.  Not only had the one eye they were watching gotten MUCH worse, but the other eye decided to join it.  The Dr. decided she needed to have the laser surgery today.  So the day was a bit of a whirlwind preparing her for surgery, figuring out when it would be and all that fun stuff.  They had to put her under for the procedure and of course had to intubate her.  They went in with a laser and basically deadened the area where her blood vessels were going a little crazy.  This was in hopes to keep them from growing and causing her retinas to detach.  Most of the time this surgery does the trick.  Of course there are those situations where it doesn’t and further surgery is required but let’s hope for the best!!!  Having this surgery and or this issue does somewhat increase her chances for needing glasses at an early age, but that was already a big possibility just because of her prematurity.  When we left tonight she was still on the ventilator but they hoped to be able to take her off at some point tonight.  They were going to start her back on her feeds and hopefully get her back to where she was as quickly as possible. 

AND

Dr. Dowser, the neurosurgeon, came by this morning and said that her head felt a little more full that it had been and that he wanted a head ultrasound tomorrow morning to check her ventricles.  He said he thought we might need the reservoir after all.  When it rains it pours!  My response was “Can’t we just go ahead and do it today so I can get 2 for the price of 1 on the anesthesia?”  Of course I was kidding….kinda!  SO we will see what tomorrow brings.  I hate to think of her having to be put under and put back on the ventilator twice in one week, but God has a plan and I’m just along for the ride!!!

Because Karsyn’s eyes got so much worse so fast they’re going to go ahead and check Kaden’s eyes again tomorrow.  I’m actually very glad about this…just a little peace of mind!!

So please keep on praying!  Not that any of you had stopped!  Pray for Kaden’s eyes, and they’re hoping to move him to a CPAP of 6 tomorrow so hopefully he tolerates that well.  Pray for Karsyn that she recover well and get back to where she was quickly and that she is pain free tonight.  Pray that her head ultrasound gives us proof one way or the other of what needs to be done. 

I’m going to bed!! A 12 hour shift at the hospital today was a little rough!  I have no idea how the nurses do it!!!!

Notice anything different?

That’s right!  The twins have graduated to open cribs!!  Bye Bye isolettes!  They got their big boy/girl beds today!  No more fighting the glare on the glass for pictures!!! 

They’ve had an exciting two days…well exciting for mommy and daddy!!  Yesterday they were able to wean their CPAP settings down from 8 to 7.  These numbers deal with the amount of pressure with which the oxygen is pushed into their noses.  They both handled the change great and the doctors are thinking they can move down to a 6 on Friday.  Today, along with getting big boy/girl beds, they moved their feeds to 30 minutes.  So they both now get 35 ml ( a little over an ounce)  every 3 hours over a 30 minute period.  And so far they’ve both done great with all these changes!!!  Karsyn now weighs 4 lbs 5 oz and Kaden weighed in at 4lbs 7oz.  We are so proud of them and the progress they’re making! 

Our next big hurdles/prayer requests

First the babies need to change to a CPAP of 6 and tolerate it with low oxygen settings.  At that point they will begin looking at moving them to nasal canula.  One they’re on nasal canula and are at least 34 weeks gestation (they’ll be 33 on Friday), they will begin working on bottle feeding.  They start off very slow and as they tolerate one feeding they add another and so forth.  Both babies are sucking on pacifiers well, but it’s the whole suck + swallow+ breathe all at the same time thing that’s difficult for preemies!  This reflex doesn’t usually kick in until about 34 weeks in a full term pregnancy.  So please celebrate these praises with us and keep our little munchkins in your prayers ….that  they will continue to progress quickly!!!  I know it’s still a ways away, but we’re beginning to get very anxious to have them home!!!  Of course we’ve always wanted them home, but up until recently we knew it would be in the very distant future.  As they progress we begin to see a light at the end of the tunnel and get more and more anxious!! 

a little daddy time

Brady, Jeff and I met Nana and Grandanny (who were in town for the walk) up at the hospital Saturday morning.  We hung out with the babies for a while and then Grandanny, Nana, Brady and I headed to hang out with the Cole Clan!  It was Daddy’s weekend with the babies!!  I get to hold both babies every day, but Jeff never get’s this luxury.  Usually when we go to the hospital together we each hold one simultaneously.  So Daddy got to hold both babies Saturday and then went back to the hospital today after the walk by himself to hold both babies again!!!  I think he enjoyed himself!!! 

While I was there Saturday I did a little redecorating!!  Mom brought the blankets Granny made that match the twins bedding!  I think it’s so fun to have their isolettes decorated as their room will be when it gets home!  Thanks Granny!!!  Yes Hayley their bedding is going to be somewhat like B&B’s!  But don’t worry this is the only material it will have in common!!!  Didn’t realize it until I’d already ordered the material!!!!

Karsyn’s new look

   

Kaden’s new look

Brady peeking in on his brudder!

 

Brady didn’t want to stay up in the nicu too long!  So he got to go see the trains and play on the playground with Grandanny!

My  chunky little man!

Sister snuggling with her daddy!!  She looks pretty content doesn’t she?

 

And I just thought this picture was funny!  After we left the hospital we got back to the Cole’s house before they got home, so Grandanny and Brady decided to relax in the grass while we waited!!!  I wonder what they’re talking about?!?!

Walking for Karsyn and Kaden

Today we did the March for Babies (benefiting the March of Dimes) in honor of Karsyn and Kaden.  Team Brewer was organized by some of my bible study girls and we’re so grateful for all their hard work to make Team Brewer such a success.  As a team we were able to raise over $2000 for March of Dimes.  This money is used for research for premature babies and healthy pregnancy.  Obviously we’ve benefitted greatly the last 7 weeks from all the money raised by previous walks….so we were ecstatic to be able to give back.    Not only did the girls organize our team but they made awesome shirts for us all to wear as we walked!!!  My two handsome men are modeling them below!!!

She’s that mom….yes that refers to the reputation I earned at womens as being “that mom” everyone always talked about!!

a footprint for Karsyn that had her name in it and a footprint for Kaden that had his name in it.

And at the bottom “it’s okay to be ity bity”

Cute huh?!?!?  Brady’s pointing out his brudder and sisters names…he was quite proud of his shirt!!

Hanging out before the walk!

Look how cool this game is Brady….

i’ll take that Colton!

Trenton and Brady “warming up” for the walk!

The boys!

It’s time to walk!

Who wants to push this stroller???

some of our walkers….

and you can see the back of our shirts…..

Team Brewer…..Every good and perfect gift comes from above

some of the riders!

Brady pooped out from walking…..wait he didn’t walk…..it’s tough to be a rider you know!

Team Brewer!

Jeff and I want to thank everyone that participated in March of Dimes this year in honor of our precious miracles.  Whether you donated, walked, or prayed we appreciate you more than you will ever know.  I have to say that it was a bit emotional as I wish Karsyn and Kaden could have been there with us.  But it was so awesome to see all the miracle stories posted along the walk and to see all the miracles participating in the walk.  Next year our 1lb miracles will be with us!!!     

Brady and the beanstalk

A couple of weeks ago I picked Brady up from school and he was sooo excited to show me his bean in the window sill.  They had planted beans in little cups that day and were going to watch them grown over the next few weeks.  Brady talked about his bean constantly!  Every morning Daddy and Brady would check on his bean and rotate it a little to optimize it’s sun intake!!!  Well Thursday was the day!  The bean got to come home!  And just for the record Brady had the biggest beanstalk in the class!!!  Brady insisted we plant the beanstalk once we got home…so we did!!!

The infamous bean…..all grown up!!  And one very proud little boy! 

 

unwrapping the roots

planting the beanstalk!

gotta give it some water! 

ta da!!  Brady and his beanstalk!

7 Weeks

Our little babies are 7 weeks old!  What a crazy 7 weeks it’s been!  Thinking about all that’s happened and all that’s changed since March 3rd amazes me.  We’ve come a long way, and still have a long way to go!

Karsyn and Kaden had their second eye exam yesterday.  They check for ROP which I’ve learned stands for Retinopathy of Prematurity.  In short, from what I understand it deals with the way the blood vessels in the eye are growing away from the retina.  Kaden’s eyes look great and they’re not going to check his eyes again for 2 weeks.  Karsyn has mild ROP in one of her eyes ( a good mommy would remember which eye it was, but I don’t!).  They will check her eyes again next week.  Sometimes this corrects itself, sometimes it requires a laser surgery.  Either way at this point it’s treatable, and they’re not too terribly concerned.  Our prayer is obviously that it corrects itself and we don’t need to do anything further!

In other news our neurosurgeon ordered another head ultrasound today and decided that at this point he has no plan to put in a reservoir.  Great news!  He seems fairly comfortable with the fact that there is no new or worsening hydrocephalus and that actually some of the previous swelling in the ventricles seems to have subsided.  We are super excited about this news!  The lack of growth coupled with the fact that she had no other “signs” (frequent A’s and B’s, high oxygen requirements and etc)  showing distress, makes him think she’s good to go.  If we’ve learned one thing in the last 7 weeks it’s to thank God and rejoice in the good news, but to definitely keep in mind that things change quickly in preemie world!  So we’re thankful and enjoying our step forward and will keep praying for more good news with each new day!

Other than that things are pretty stable in the A pod!!  We’re still waiting on them to grown and mature a little more before trying to mess with their CPAP settings.  The doctors and nurses just want to make sure they’re stable in their oxygen requirements before springing too many changes on them.  Both babies are requiring anywhere from 25% – 32% oxygen at any given time.  Kaden usually requires a little more oxygen during feedings, and both babies require significantly less oxygen when on their bellies.  Karsyn has actually been known to sit comfortably at 23% the past few days!! So the race is on to see which K makes the switch first!!!!  So amazing to be able to have a “race”.  The Karsyn we knew 4 weeks ago would have been no where in this race!!  Our God is amazing!

A few pictures from the last few days!

Daddy’s little girl!

 

Kaden hanging out with mommy! 

sometimes you just have to laugh

and since we could all use a good laugh I’m going to share my humiliating story with you!

So Monday was just one of those mornings.  I left the house at 7:45 giving myself plenty of time to get to the hospital by 8:45 so that I could pump and then be in the NICU to hold Kaden as they started his 9:00 feeding.  Well, I knew I was in trouble when I got on the highway.  The worst traffic I’d EVER seen.  GREAT.   Most of you know that I’m still boycotting TCH’s parking situation so I park at the south fanin park and ride and take the rail train into the medical center.  It actually works out great and is very easy.  SO I get to the train about 8:40…..and of course it’s raining….perfect.  I get on the train, ride into the med center and arrive at the stop about 8:55.  I’m thinking to myself…if I run I can get up there in time to ask them to hold the feeding until after I pump.  So I get off the train….mind you it’s still raining….and I start to walk briskly ( I don’t think you can acutally call what I do running!!).  I make it all the way to the front of childrens (which is a pretty decent walk)  and then it happens.  I BUST my tail….in a muddy water puddle.  Yep, I’m now soaking wet, have mud all over my wet pants and can barely walk because apparently I landed solely on my left knee cap!

I’m filthy, the place my knee cap used to reside is now swollen to the side of my head, but I made it upstairs before they started his feed!!!  Granted I got a few strange looks, but it is what it is!!!!

What can you do?!?!  Those of you who’ve known me a while (Erin, Ashley, Jana and all my Kaufman friends) aren’t at all surprised by this!!  This kid knows how to fall and embarrass herself!!!

Hopefully this helped you smile today!! 

no more pictures mom

 

I thought this picture was hilarious!  Girl if you think I take a lot of pictures now, just wait until you get home and I have more than an isolette to work with!!

Not much to report.  Both babies doing well today.  They are wanting to move some of Kaden’s CPAP settings down, but want him to be on a little lower percentage of oxygen first.  Please pray that he would tolerate less oxygen and be able to move towards getting rid of CPAP.  Both babies are getting tired of those silly prongs in their nose and I know they’ll be so much happier on canula.  As for Karsyn, the neurosurgeon came by again this afternoon (of course right after I left) and decided that he once again wants to wait and watch her.  Are you guys getting tired of hearing that…..I am!  Don’t get me wrong, Jeff and I certainly don’t want her to have a surgery she doesn’t need, but they keep saying she will need it at some point and honestly we’re ready to just get it behind us.  Oh well, all in God’s time!  Just such a roller coaster to walk in one day  expecting surgery and leave the next not knowing…..

On to the pictures….all 3 of my babies!!

Kaden….looks pretty relaxed huh? 

Karsyn snuggling with the blanket Granny made for her!

Big Brother kicking it in mommy’s shades!!!

Day off

Mommy took the day off today!  This was only my second day since the twins were born to not go to the hospital.  It was hard not to be there, but I know I need time away, and it’s nice for Jeff to have alone time with the twins as well!  Grandpa and Grandma Nan were nice enough to meet Jeff at the hospital and take Brady for a fun afternoon at the aquarium!!  He had a BLAST and came home with lot’s of toys, and stories about sharks!  Brady is so much stinkin fun!  I love the stage he’s in right now.  He talks nonstop, is so observant and picks up on everything that goes on around him!  I seriously feel like I laugh at him all the time right now!!  Okay so I got off subject!  I just wanted to make sure no one thought we forgot about Brady!  He just moves so fast right now we haven’t been able to capture many pictures!!!  But he’s still around, entertaining us all the time, and finding more and more ways to test his boundaries every day!!  Love that little boy!!

Back to my day off!  I finished up some projects around the house, went to target (by myself!!), and got a pedicure.  It was nice to have some alone time, but I’m ready to see my babies tomorrow morning!

The K’s had a good day.  They’re both doing well, and enjoyed their cuddle time with daddy!  Karsyn weighed 3 lbs 13 oz today!  Her  head grew a little more than they hoped it would yesterday.  The doctors seem to think they will need to do the reservoir this week sometime.  Jeff and I both feel this reservoir is in our future at some point and are ready to get it behind us.  I know the reservoir is necessary and we obviously want her to have whatever she needs, but she will have to be intubated for the procedure.  This obviously takes several steps backwards and kinda puts a damper on all the improvements we’ve made.  BUT she’s a fighter and we have no doubt she will push forward and battle back like a champ!  Keep those prayers coming!

Mr. Kaden is still trucking along.  He weighed in at an even 4lbs today!!!  We are so proud of how well they are growing!  He is still tolerating his feeds over an hour.  Our biggest prayer for him right now is just that his little lungs will continue to grow and improve and that they’ll be able to go down on some of his CPAP settings this week. 

The March of Dimes walk is this Sunday and we’re so excited about Team Brewer and so thankful for everyone on our Team!  If you don’t have a team and want to walk this weekend feel free to come on out with us!!!  Click the March of Dimes button to the right to get more information.  A special thank you to Bethany, Stacy, Amy and all the bible study girls working to coordinate Team Brewer!  Can’t wait to see the shirts!!!

Couple of pictures of the twins…..I looked back and previous posts last night (and of course I cried a lot!) but I can’t believe how big they’ve gotten!!  And I promise to try to get some pictures of big brother this week!

Kaden James – Day 45

Karsyn Jane – Day 45

I love short posts!

That means things are going good with the babies!!  I have nothing much to report!!  They’re still holding their own.  Both are still tolerating their feeds well over an hour.  Both are at anywhere from 27%-32% oxygen.  And neither are having many noticeable A’s and B’s that they do not resolve on their own.  Karsyn’s head is still soft, so they’re still just in the “holding pattern” watching it closely and they will be ready to react if there are any sudden changes.  They will do another head ultrasound on Monday.  The doctors are hoping to start weaning both of their CPAP settings next week. 

We are so pleased with the progress they are both making.  We are still praying like crazy that their lungs mature and that they are able to handle lower cpap settings.  We are all too aware that anything can happen at any time to cause set backs for our little munchkins, but we are so thankful for the improvements God has given us over the last week.  We are definitely in a better place than we were a couple of weeks ago and know that God is in total control and is to be given all the credit for these miracles.  We’re so thankful for the prayer warriors, nurses, doctors and etc that God has sent to care for our miracles.  Although the babies seem to be in a better place we are reminded of the roller coaster that is the NICU and ask that you continue to pray!  Pray for the nurses and doctors, for their little lungs, and obviously Karsyn’s brain (she’s definitely not out of the woods), and for strength for Jeff and I.  The daily emotional strain of having children in the hospital is definitely still present!  It’s so amazing to look back and see how far we’ve come in the last 6 weeks.  It’s been a CRAZY time, and a time I’ve definitely prayed over and over again wasn’t my reality.  I’ve cried many tears, prayed many prayers, and questioned more than I wish I had, but God has remained faithful to us.  I’m sure there are many more tears, prayers and questions around the corner but thankfully God will still be there!

We are going back to Women’s tomorrow morning to drop off a little “thank you for all you did” present and are so excited to see our nurses and doctors again!  Daddy and I will then head to Children’s to love on those babies and then back home to love on that 2 year old!!  Here are a few pics from the day!

sweet little princess

Kaden’s precious little eyes!

I laughed so hard when I saw this picture!! I immediately thought of the home alone movies!!

sleeping again!!  I I know he has stuff all over his face, but I can’t get over how much he looks like Brady!!

First eye exam

Good news from the Brewer babies today!  Where do I start?!?!  First of all Karsyn did not have her surgery this week.  This is not to say that she won’t need it at some point, but right now her head has been softening and the neurosurgeon doesn’t want to put in a reservoir that might not be necessary.  SO he’s going to do another head ultrasound tomorrow just to make sure the ventricles haven’t increased in size and we’ll go from there.  Yesterday they moved Karsyn from 2 hour feeds to 1 hour feeds and she did great.  This just means that she’s getting fed every 3 hours, but the milk is given to her over the course of an hour.  Both K’s had their first eye exam today to check for ROP.  I don’t know what this stands for yet, but I know that it’s a common eye condition in preemies.  So far neither of them seem to have issues.  They will continue to check their eyes weekly, but so far so good!  Mr. Kaden was moved from continuous feeds to 2 hour feeds yesterday and did wonderfully!  They hope to move him down to 1 hour feeds before the end of the week.  They did a repeat brain scan on Kaden today and see no evidence of the bleed.  GREAT news!  As the doctors were sharing all this information with me this morning I told them I was leaving….I’d had all good news and I wanted to get out of there before they found something bad! 

We are so grateful for days like today.  We have come so far in the last 6 weeks and we thank God for each and every bit of good news!  They are thriving at TCH and we’re really enjoying the amount of time we get to hold them and cuddle with them each day.  I don’t know if it makes them feel better, but it sure makes me feel better to get to hold them for hours at a time each day!

Look at these sweet little ruffles!  Who wouldn’t want to cuddle with that?!?!

Little Sister

Big Brother/Little Brother…..my middle child!

I love the next two pictures!!  They have the same little pose…bottoms up!

Cute little video of Karsyn.  This was right after I got to hold her…she was very “talkative”!!  And of course I had to get a shot of her cute little frogs on her feet!

Animal Prints

Not too terribly much to report from baby land today….BUT I’ve gotten into trouble lately if I don’t blog!  Sooo Paula this is for you…..I certainly don’t want anyone to worry!!!! 

The K’s are doing good today.  The only change for the day was they moved Kaden’s feeding tube back up into his stomach.  So far he’s tolerating it well.  They hope to maybe move him off of continuous feeds sometime in the near future.  His lungs are still a bit hazy.  They’re hoping the diuretic he’s on, mixed with the CPAP setting adjustments will help clear this up eventually.   Miss Karsyn is about the same.  Plugging away at her feeds, and sitting at about 30% oxygen.  She might have her reservoir surgery tomorrow.  While I was there this morning she was set to have the surgery tomorrow morning…..however evidently after I left the neurosurgeon came back by, felt her head and decided he might want to hold off.  So, who knows!!  Thus is our life lately….never know what you’re gonna get when you walk in!!!  SO…pray for her surgery just in case!  And pray for sweet Kaden that he continue to tolerate his feeds as the changes are made. 

Here are a few pics from today!  The theme seemed to be animal “prints”!!! 

Sweet little paw “printed” bum!!  Look how cute his little feet are all curled up!!

get this thing out of my nose! 

her first time to wear the onesies mommy made!  You can never go wrong with Giraffe!!!

Look at her cute little socks!!

 

Cute Brady story!  We were in the car tonight talking about “his babies”.  We talked about the nurses and the doctors taking care of his babies, and about how daddy held Karsyn on Sunday.   Brady then began to tell me that he wanted to hold his babies, so we had a conversation about how his babies were too little right now.  But when they got bigger Brady could hold them all the time.  He says “yeah, I put them in my shirt”!  AHHH life through the eyes of a 2 year old!!  I can forsee a time in our future when I walk in to find Brady stuffing one of the babies down his shirt!!!!

Here are a couple of pictures of our visit Sunday with Big brother and the babies!

waving at Kaden!

telling his brudder all about his trains!! 

patting karsyn….in daddy’s shirt!!

Sweet boy wants to hold them so bad….or stuff them in his shirt!!