Not So Fun

Every mother collectively sings: "A-ha!!!! Welcome to the club!"

Karsie has been a little pill this afternoon. She had a fairly good night and a good morning. We took her to church for the first time, we came home for a bit, and went out to Chipotle for lunch followed by a trip to target. Michelle used her Moby wrap, which she found a great position for her, and Karsie went right out.

Then we got home..... and oh the horror!

She started her screaming that we have come to think means hunger. So we tried to feed her. Didn't work. So we tried to wrap her up...didn't work. We changed her diaper...no luck. We had to feed her anyway, so we hooked her up to the pump. She screamed harder. So much so that it sounded like noises from The Exorcist. We were waiting for the green spewing. We tried to put her down...nope. We put her in the swing...that actually worked...for about 5 min. Then she realized she wasn't screaming and screamed some more. We finally found something that worked. Walking with her while carrying her and her feeding tube. We thought "oooh...she's out...let's try and put her down." She sniffed out that trick right away and began screaming once more. We are finally, after hours of screaming, not trying to console her. Michelle wrapped her up real tight and held her on the bed. They both, after a lot of work, fell asleep. This could be a good restful night for us, or it could just be a preview for tonight.

Either way...not so fun!

She Did It!!!!

This is what an ex-NICU baby looks like when she takes her entire feed orally. First time! We think she actually took more.

Kevin was in charge of Karsie for a few hours while Michelle was at a baby shower. Karsie was very fussy for a long while. Kevin and Grandma Turner worked very hard to console her. They walked around with her...no success...they changed her diaper...no success...so Kevin stuck his pinky in her mouth and she almost sucked it off! The decision was made to feed her much earlier than her scheduled time as it was the only thing that would calm her down. So she took somewhere between 70-80 mL by mouth. She has been out since then.

Game Day!

Nice Gameday family photo.  Those of you that know about my deal can see the Irish shirt under the jersey, so don't accuse me of going back on my deal.  I'm still rooting for them (not to lose by more than 50).  
One day we'll get her to put up the victory sign.  Her finger mechanics aren't working yet.
After this season I have to get rid of the shirt.  As you all can see, Karsie is not happy about me wearing this.

We took a nice family walk today with Nana and Grandma.  Karsie really enjoys her car seat and stroller...just like every other baby.  Even in her little donut.  

A Day in the Life of the Turners...Now.

So at this point Karsie is, at a minimum, a two person job. She needs to get fed every 3 hours. And by feeding we don't mean get up and bottle feed her. Since she has a feeding tube in we need to make sure, during her feeding, that she doesn't pull the tube out and have it go into her lungs, which would be very bad, and also that she doesn't throw up a big amount. Therefore, someone has to be up and watch her during that hour. So our schedule goes like this:

9:00 p.m. to 10:00 p.m. - Kevin and Michelle work together. Usually, Kevin gets the milk ready (we have to mix breast milk, rice cereal and formula to give her the extra calories and then fill up the syringes) and Michelle gets Karsie ready.

9:00 p.m. is also Karsie's dressing change. See "Changing Pinky" a month or so back.

10 p.m. to midnight - Kevin is in charge of any crying and soothing, but this is sleep time for us. Michelle pumps.

midnight to 1:00 a.m. - Kevin's shift. In charge of feeding and medicine.

1:00 a.m - 3:00 a.m. - Kevin again in charge of crying/soothing, but otherwise sleep.

3:00 a.m. - 4:00 a.m. - Michelle's shift (also pumping).

4:00 a.m. - 6:00 a.m. - Michelle in charge of Karsie if needed. Sleep.

6:00 a.m. - 7:00 a.m. - Both shift. Karsie has woken up both mornings during this shift. She is very happy and playful during this time and a while after.

7:00 a.m. - 9:00 a.m. - Chores. Play with Karsie.

9:00 a.m. - 10:00 a.m. - Both shift for feeding. Dressing change. (By the way, there are four medicines that we use and during every feed we give the medicine depending on the schedule of the medicine. For this blog purpose we will not put every scheduled medicine down).

10:00 a.m. - noon - Chores. Play with Karsie, but she's usually asleep at this point. Also, Michelle pumps again.

noon - 1:00 p.m. - Both shift.

1:00 p.m. - 3:00 p.m. - Nap if time (one of us at a time).

3:00 p.m. - 4:00 p.m. - Both shift. Michelle pumps.

4:00 p.m. - 6:00 p.m. - Nap if time (the other one of us). Usually consoling Karsie as she is getting grumpy.

6:00 p.m. - 7:00 p.m. - Both shift.

7:00 p.m. - 9:00 p.m. - Get ready for bed. Michelle pumps.

The second night/day we were able to get much more sleep. Karsie slept through the night again, but we worked out a routine where we were able to get much more sleep in during the time we have reserved for it. So far she's been a fairly easy baby considering. We just have a million things to do FOR her....and we're loving every second of it.

Karsie's New Home

Karsie in her crib.  She loves sleeping in this.
On Daddy's lap.  
Grandpa and Karsie are reunited after a short time apart.  But it seemed much longer.

Karsie at her first doctor's appointment.  Sounds funny to say after spending three months in the NICU.  We LOVE her new doctor.  This picture was right in the middle of a raging tantrum. We happened to calm her for 5 seconds to take this picture.  

Day 1 - Plus Starting the Next Phase

Karsie slept through her first night home.  Kevin and Michelle did not.  So far Karsie is handling the transition perfectly.  She is not spitting up hardly at all.  She had two wet burps (both after her Reglan).  We also had a nurse come by and bring some feeding supplies yesterday.  She stayed for a couple hours and helped with the pump that was delivered (that we ended up having to trade anyway).  

Something to note:  Karsie LOVES ceiling fans.  She sits and stares at them for long periods of time.  This afternoon she started to talk to it.  It was quite funny.

Karsie's Future:  We're not sure if we ever explained the plan after discharge since that seemed like such a huge hurdle, but now that we're here, we'll continue... At this point our next step is to continue growing and feeding.  There's not a lot that will happen medically other than making sure she gains weight.  We will continually make follow up appointments with our doctors to see if she is on the right track.  In about 4 months we will see our plastic surgeon and have an evaluation to see how Karsie is doing and we will probably set up an approximate date for putting in her tissue expanders.  Our last big hurdles come in about a year (we think). This is the tissue expanders followed by the closure surgery.  The plastic surgeon will put in the expanders and stretch out Karsie's muscles and skin so when Dr. Saenz puts in the organs the muscles and skin can stretch around them and they can close her.  After that, she's done other than follow up appointments and healing.  But for now, we just keep her growing.  

On to day 2... 

"She's Well Worth the Time That It's Taken to Get Here, Now!"

She's Home!

It took a little longer than expected, but we're home.  Karsie is currently happy in Nana's arms as Michelle is "nesting" and Kevin has just finished carrying the entire hospital into the Royals' house.  We are getting a visitor bringing many supplies to do Karsie's dressing change and feeding, but they weren't coming until 6, which meant we had to wait until at least 3 because she needed to be fed, which really meant 4:00 because it takes an hour to feed.  Add in paper work and more paper work, it took us a little bit.  But all is well in the house of Turner (and Royal).  Now begins a new chapter of normal parenting worries as the training wheels are now off!  Love you all!

Breaking Out at Four

It's official. Karsie will be coming home today. She will feed at 3:00 and then we will leave right afterward. Thank you for all the prayers. Now we move on to the next phase, but this phase will be done at home.

Homecoming Explained

We realize there wasn't much information regarding her discharge, and updates haven't been real frequent lately, so here's the scoop:

Karsie has been having amazing days lately.  She has all of a sudden started to gain lots of weight. Over the past week or so she has about averaged her goal at around 30 grams per day of weight gain (except tonight which is a prayer request we will get to).  We had been hearing rumors for a couple days that we were within a week or so of discharge.  

We have been also excited at Karsie's eating habits.  At one point this past week she was taking close to 50 mL of breast milk orally.  She has slipped a bit from that, but she is still doing quite well.  

Anyhow, we knew the doctors had a meeting today to discuss all of the patients one by one (as they do every Tuesday) and we knew we were going to come up.  Everything had been going well and we felt like the hospital wasn't doing anything that our pediatrician couldn't do.  We thought they were going to give us a date in a few days, but instead they came in and said "So, do you want to take her home tomorrow?"  Like we would say no to that.  

We have a prayer request.  Of all nights to lose a bunch of weight Karsie decided to do that tonight.  Her trend is still good, which we think overrides one day's worth of data, but it's still making us nervous that they will look at the one day and decide to hold her day to day.  The good news is that this is her pattern.  She grows and grows and then loses, and then grows and grows and then loses.  We hope they see this and pray that they still let her come home.  She does need to continue to grow, but all of her treatment can be done at home, and all of her orders can be done by our pediatrician.  

We will keep everyone posted tomorrow as it will be a long day getting everything ready and done.  We hope to have our little one where she belongs tomorrow:  with her parents.

Happiest Homecoming on Earth

After 89 days in the hospital, weeks of uncertainty, ups, downs, and many, many prayers, KARSIE IS COMING HOME!

We will post more a little later, but she will be coming home tomorrow sometime! Needless to say we are very excited!

God is good!

A Very Special 'Thank You'

To all who follow our blog, we would like to request your words:

We feel the end coming...soon.  Karsie's story has been so remarkable, we hardly can believe this phase is coming to an end.  However, it doesn't finish without serious recognition and credit to some very special people.  The staff at Children's Hospital helped save Karsie's life, and we are well aware that we are not the only ones grateful for their commitment to our daughter.  

In a normal situation we would buy a really big card and have as many people sign a quick note and thank you as would feel inspired to.  However, our situation is a little different and we're not all together.  So, we would request your time to write a quick thank you or note to our nurses and doctors who helped save Karsie.  When Karsie leaves we will print them all out and give them to our nurses/doctors.  You may email them to Karsie's email (listed at the top of the blog), to our email address kandmturner@yahoo.com, or leave a comment (but just know that some of our nurses read the blog so if you want a surprise it won't be on  a comment).   

If you would like to write a specific note, here are some names:

Primary nurses:  Amy, Jamie, Lindsey, Ruth, and Heather (a new primary but still wonderful) - These guys are so very wonderful.  They are the front lines of Karsie and have been there since the beginning.  We do not have enough space to put all of our grateful thoughts down.  (p.s. Ruth/Amy...we put all primaries in alphabetical order...there's no preference there in case that fight is still continuing :).    

Surgeons:  Dr Losasso - first surgery; repaired her liver and put on the siloh

                    Dr. Saenz - put on Patch and is her residing surgeon

                   Dr. Hilfiker - repaired Karsie's torn umbilical cord

Neonatologists:  Dr. Settner - probably our favorite doctor.  She really listens to us and tries to balance our concerns with normal practice.  Dr. De la Rosa - Spent a lot of time at the bedside with Karsie.  Dr. Knight - Saved Karsie's life by helping with the bleeding and transfusion.  She also is the head doctor and bent the rules by letting our family in during times when they weren't able to.  There are other doctors but most didn't spend a whole lot of time with us.  We thank them all.

Nurse Practitioners:  All of them were great help.  Here are a list of names.  Hope we don't forget any.  Kylee, April, Barb, Pam, and Kim were present most.

We thank everyone.  We get choked up thinking about our little girl without these people.  Our story would not be the same.  Please join us in giving a minute of your time to write a quick note.  It will mean so much to them...and us.  

Karsie cannot say thank you herself, so let's all join together and do it for her.

Fighting Sleep

Quick update:  Karsie's an eating machine lately on the breast.  She took about 50 mL this evening, which is only about 20 below her total she needs.  If she keeps this up she won't need her feeding tube long.  She didn't have any spitups tonight, so we're hoping that translates into weight gain tonight.  She's been very happy for Daddy this weekend.  He will miss her tons after he has to go back Sunday morning.  One day at a time.

Some Good Some Bad

Let's start with the bad news:  Karsie lost weight last night.  After two really good gaining days, she lost a good 45 grams.  Hopefully she will just gain like 70 tonight and we'll be back on track, but unfortunately this seems to be her trend.  We have a couple theories on this.  First of all, she could just be needing more calories per ounce to manage her amazing skin growth.  She is tolerating the 25 cal/oz much better this time, so we hope if she has to go up that she will do okay.  We also think there's a possibility that the 25 cals is too nutrient dense and there's a possibility it's just going right through her and she's not getting as much.  In other words the two days of good weight gain were residual from the 24 cal/oz and now her body isn't getting what it needs.  This is less likely, but we wonder.  The plan is to give her a couple days of watching and then reevaluate.  We're a little bummed about all of this as it was looking like home was just around the corner, but there's good news to go with all of this.

Good news:  Let's start with her oral feeding.  In the past few days Karsie has really picked it up with the amount of food she takes orally.  She took about 50 mL from Michelle's breast last night and 45 mL from the bottle from Ruth.  Her average we would say has been about 15-20, but in the past couple weeks she has probably averaged in the 30's with some days being like yesterday when she is eating much more.  We still need her to gain weight, but this could mean a much shorter time on the ng tube.  

Moving on with the good news.  Pinky looks awesome!  We've talked about her skin growth (which is also probably a cause for her lack of weight gain) and how it's thickening and getting to the point where it will be completely skin soon, but we have not said that it is getting a bit smaller.  Her body seems to be accepting her organs, and while it has not been confirmed by a professional, we have noticed a significant loss in Pinky's height.  Her organs are moving and changing its shape, almost daily, but it really seems to be decreasing in size.  We've started to measure it, so when we get a few weeks in we'll have some good data to put on here.

Developmentally, Karsie is doing so well.  She is getting so good at smiling lately, which is right in the zone for her gestational age.  Also, she is moving her head all around, she's showing neck strength, she moves her arms and legs around, she focuses...lots of good things all around.  

Now...let's get growing girl!!!  It's time to come home!

Smiles!

Karsie has been having a string of good days...knock on wood. She has gained another 30 grams today and we're hoping, as there has been little spitups, that she continues that trend. We'll know more about that tomorrow afternoon.

We are very excited to find that she is now smiling AT us. She is quite the little playful thing. Keep praying for growth!

Playing the Waiting Game

Yesterday at 6pm, Karsie went back up to 25cal/oz. The hope is that she is older and will be able to handle the increase this time. We are just going to have to wait and see how she does this go around. If she is grumpy and upset again, or if she spits up too much, or if she doesn't gain weight... then we will have to try something else.
Karsie did gain weight last night (60 grams) and hopefully that is the start of a trend?!? She has been averaging 1 spit-up/shift (5-20mL). She has also been doing a great job eating by mouth. She is increasing her average breast feeding intake to 25-30mL each time; she has also increased her bottle intake to 15-30mL each time. It is nice to see her working hard on eating by mouth. We will be able to take her home with the NG tube, but wouldn't it be nice to not have to (or not need it for too long).
In other news, Kevin is planning on coming down again this weekend... after 2 full weeks of being home and we are both very excited about this! Yay for Kevin spending the weekend with his girls :)

Less Words Wednesday

Nana and Karsie snuggle.
Grandpa has a last visit with Karsie (due to flu restrictions, he will not be able to see her until she comes home).
Sleeping so comfy!
Karsie is still on 24cal/oz. She is tolerating it fairly well with fewer spit-ups and she is a much happier girl. She still isn't growing the way she needs to be growing. She has averaged 5grams a day for the past 3 days (minimum growth for her would need to be 15-30... with 30-60 being the goal). Pinky looks great and our surgeon anticipates all skin within 2-3 weeks! We are not sure what the plan is for getting Karsie to grow, but somehow it appears she will need more calories.

Improvement

First of all, Karsie has been doing well since being backed off of 25 calories.  Today she has had only one spitup, which was very small to begin with, and overall she has been having only one or two since being backed off (which was on Saturday).  She has been seeming much happier since then as well.  We are hoping that all is accompanied by weight gain.

She lost quite a bit of weight a couple nights ago we think due in part to her getting medicine that flushes out her system.  That naturally takes away their weight.  Yesterday she gained a bunch of it back, but we're still not seeing the consistent weight gain that will get her out of the hospital. We hope that since she is not throwing up as much that she will be able to grow, but much of her food goes directly to Pinky.  

Listen up Karsie.  It's this simple:  Gain weight = Go home.

Until Growth Do We Part

We had another family conference today.
We asked to hear the general plan for Karsie and (as we suspected) there isn't a set plan because right now everything is trial and error with her. The goal is growth. The only real plan is for the doctors/dietitian to come up with some kind of regiment that will get Karsie to grow and keep most of her food down... That is, at this point, the last hurdle. Karsie will most likely come home with the feeding tube and some meds and we will tend to those things at home and with her pediatrician. So the big goal for the hospital care is to get her to grow. She is still on 24cal/oz and tolerating it well (again). It is possible, but unlikely, that she will grow with the 24cal. If she doesn't grow, there will be another attempt to give more calories (and some extra nutrition) in a format she can tolerate. So our huge prayer at this point is that she will either grow with the current recipe, or the doctors/dietitian will be able to come up with a recipe that will help her grow... and also that we would have patience as the process goes on.

As for her daily update, she has only had 2 spit-ups since last night. One was a fair amount (20mL-ish) and the other was more of a wet-burp of 3mL. She is stooling better and appears to be much more comfortable than when she was on the 25cal/oz. We are hoping that we will start to see some weight gain now since she is spitting up less!

The hospital is preparing to shut-down (on Wednesday) to all visitors due to the H1N1 flu, the RSV flu, and the seasonal flu (the flu trifecta). This means that Grandpa will no longer be able to visit Karsie until she comes home. Nana will be able to go in on evenings with Michelle while Kevin is out of town, but when Kevin is in town she will not be allowed in either. We are glad that it has been put off this far, but we are even more anxious for her to get home with the new policy.... and the fact that it means flu season is fast approaching, and we want her out of the germ-infested hospital.

Thanks for the continued prayers and support!

One Step Back

Friday:
The doctors agreed to take the extra calorie out of Karsie's food. She is back on 24 calorie and doing slightly better. Her stooling pattern has returned to her normal and her spit-ups have gone down considerably in volume. Friday, she was also taken off the multi-vitamins and the reglan (med for helping with reflux). She got a transfusion of Grandpa's blood Friday evening to help with her energy. She took 28mL breastfeeding and around 20 from the bottle.
Saturday:
Saturday her feeding was left alone but she was put back on the reglan to try to help with the spit-ups. She had fewer spit-ups and the volume was still low! She is also continuing to have a more regular stooling pattern. She didn't do as well feeding orally as she can, but we didn't push her either. We are trying to make every oral/eating experience positive... so if she shows us she isn't interested, we try to let her be the boss with it. If she eats and then throws up, she didn't get the nutrients anyway and she then begins to associate eating with bad feelings. Pinky still looks amazing. It is over halfway covered with real skin, and the rest is good granulation tissue. Still no growth.

We are hoping that Karsie will be able to grow on the 24 calorie food and begin to take bigger feeds by mouth. She will have to show a good amount of growth before she will be able to come home (even if she has the feeding tube still). Hopefully this week we will see a few steps forward.

Rough Times

It has been a couple days of Karsie having a tough time. About four days ago Michelle started noticing Karsie seemed a bit "off." They added an extra calorie (up to 25) about that time and we don't think she is handling it very well. She has handled the condensing fine and everything else okay, but this extra calorie an hour has seemed to put her over the edge. She is throwing up quite a bit more, she's more fussy, and she has started pooping different and less regular. She also has stopped gaining weight (we had a string of days where she was gaining, but then it just stopped). Michelle is pretty sure that it is due to this extra calorie (motherly hunch).

Today they decided, with Michelle's input, to take her off of the extra calorie and keep her at 24 calories per hour. They also are taking her off of a couple medications that can be hard on her stomach. We hope this does the trick and she's back to her normal self, but we are worried that she spent enough time working hard on her digestion that it has done some damage and we will have to backtrack quite a bit. Think about when you eat a bigger meal than you're used to with foods that aren't nice to your digestion and then think about doing that every three hours for four days straight. It could take a while for your body to recover from that. We're hoping that's not the case and she bounces right back from that, but we'll see.

The Device Part 2...

Today we were able to fit Karsie with the device into her car seat. There will be more adjustments made, but it is looking very nice. The orthotist was even thoughtful enough to give it a cute pink strap!
Karsie enjoyed being in the car seat, until one of the straps was adjusted and gagged her... and then she broke in the car seat by spitting up all over it!

In other news, she is now in a private room in C-Pod! What luck! Her weight stayed the same again and she had a couple spit-ups yesterday. She still hasn't been condensed down to half-hour but she is now being offered the bottle/breast 6 times a day (8 will be the goal here).
She did breastfeed very well today, and is continuing to take around 30mL each time she feeds orally. Hopefully tomorrow she will go to 30min feeds. Everything is baby steps with her... we can only change 1 thing each day regarding her feeds because we want to know if it worked or not. If we change too many variables, we don't know what worked and what didn't. So baby steps it will be.

The Device...

Not much has changed today. Karsie is still on 1hr feeds and we are hoping that the spit-ups will decrease a little. Her Nurse Practitioner wanted to give her another 24 hours to see if she might have fewer spit-ups before condensing her feeding. No change in calories or amount either.
Her weight stayed basically the same, which is also ok, since the one night gain of 88 grams was enough to cover 3 nights growth!
The exciting news for today is that the orthotic device is almost ready. It was fitted again today and fits pretty well. The orthotist wanted to cut down a couple areas along the bottom and then add the strap. Tomorrow we will be testing it with her car seat to make sure everything fits!

Movin' On Up

On Tuesday, Karsie did pretty well!
She is now eating 67mL an hour with 25cal per oz. She is handling the increases very well. She is still having some spit-ups but well within her normal range (and mostly always when she is pooping). The plan is for her to condense again (30min of feeding and 2.5hr off) sometime today.
She is now taking 20-30mL from the bottle on a regular basis (and once she took 50). Last night she took 36 breast feeding too! She is working hard :) She is also growing... the other night she went all the way up to 3.305!!! This was an increase of 88grams in one day. It very well might be lower today, but even so, the trend is moving in the right direction. Her head and length both increased 1cm this last week also!
The Orthotics department at the hospital is creating a device for Karsie to wear in the car seat so she can use a regular rear-facing seat. They brought it by yesterday to try it on and it was just a tad snug. They are coming by again today and I will try to get a picture of it. It was inspired by a device made for another "O" baby (an article in a medical journal). It is a fancy foam doughnut that will go around pinky when she is in the car.
Finally, Karsie made the move last night to C-Pod. This is the step-down unit at Children's. She still has the same doctors and nurses, but is in a much larger room with way fewer babies! We LOVE C-Pod. There are only 10 beds in the whole giant area. It is much quieter and more spacious.
Nana is getting Karsie all settled in her new bedspace!

Kevin's Top Ten

Things I'm looking forward to:

10.  Getting a weekend where I don't have to drive ANYWHERE.

9.  Walking a few steps to check on our baby instead of driving 20 min. (after the 5 hour drive)

8.  Getting to see Karsie between the times of 6:30 and 8:00.

7.  Not having to wait for a phone call at 11:00 p.m. to get an update.

6.  Seeing Karsie on a Monday, or Tuesday, or Wednesday, or Thursday.

5.  Not hearing bells, sirens, alarms, etc. 

4.  Not having to feel like I need to hush people talking too loud around my daughter when she is trying to sleep without feeling like it's not my place.

3.  Spending time with my girls without anyone else around once in a while.

2.  Getting to take off my hospital band.

1.  Having grandma, aunts, uncles, godparents, adopted aunts and uncles, friends and relatives able to see Karsie when they want to.