Karsie Works on Her Bottle

Evening Update (9-7)

Karsie took her feed well tonight. She has had a good day with the bottle as she has taken all of her milk without any spit up (except the very little bit this morning that we reported). She is off of the TPN!!! She is getting clear liquids with glucose for a few days just to make sure she handles the switch okay, but so far so good. We may have forgotten to mention that if she handles being off of the TPN for a few days she will most likely have her PIC line taken out. This is the line that is inserted from her foot into one of her veins and goes directly into her heart. We will be happy to get this out for multiple reasons. One being it gets a line out of her body; two being it keeps a possible infection away; and three being we can dress her feet with socks and onesies and such.

"Goodbye Daddy, See You Soon..."

Karsie should be off of her TPN in a couple of hours. Around noon they typically change the feeding, but they may wait a little longer today to make sure she is handling everything okay. She had the tiniest bit of spit up during her feeding today, but they aren't going to change anything it sounds like. That means that unless she spits up more, which she hasn't done on the continuous feed in a very long time, she will be on nothing but breast milk (feeding wise) at the end of the day. We are very excited about that as it will hopefully give her liver a chance to heal itself.

We are noticing that Karsie hits a wall, so to speak, when eating orally. Around 10 mL she kind of gets tired, or full, and doesn't really want more. We haven't talked to a doctor about this, but our theory is that on continuous feeding her stomach only has to hold a certain amount of food at any given time. During the course of an hour she is getting about 16-18 mL in even increments. When she is bottle fed, she is given the same amount of milk all at once, which we think makes her fuller quicker and might be a bit uncomfortable, which could trigger reflux. We're hoping that when they start to consolidate the feeding into bigger chunks that this will start to expand her stomach so that she can handle more milk in a shorter amount of time. Just a theory.

Her breathing has been consistently okay. She does desaturate (go down on her O2 level) when she cries or moves a lot, but hopefully that will go away.

So far Pinky still looks good. They are covering it with a slimy film instead of wet gauze so that it stops sticking to her scab when they pull it off. Other than that, there isn't really any news to report. It still looks good and looks like it is healing the way it needs to. One day at a time...

Thank You Babybeblesseddolls.com

Karsie LOVES her doll!  We tried to get a good image of her interaction with it (after she examined her for a long time) but they all came out a little blurry.  We continue to be very thankful for babybeblessed.com for featuring Karsie and promoting prayer.  She is a real testament to the power of prayer.  

A quick update:  Tomorrow she goes off TPN providing there are no setbacks.  They have power weaned her on her feeding to the point where she will be taken off of it tomorrow.  Also, she has taken another small step forward on her breathing as her O2 flow is now at 1 liter.  When she is weaned to .5 then 0, they will most likely take her off of the nasal cannula.  

Prayer request:  This isn't a major concern yet, but Karsie is having some bad reflux lately, especially when she is orally fed.  We are a little nervous that she will develop an aversion to the oral feeding as it makes her stomach hurt, but so far it hasn't.  We're trying to develop ways to stop that, so we request a little bit of prayer on that.  Also, her blood pressure has been a teensie bit high lately.  The doctors aren't real concerned about it, but they are watching it.  We have a continual prayer request that she does not develop an infection as well.  That would set her back quite a bit from all of the progress she has made over the past few weeks.  Thank you so much.

Strawberry Girl Plus a Game Day Photo

Karsie and Her Hiccups

"Pinky" it is...

We know it's a half hour early, but we're going to call the name race:  Pinky wins!  For now, her bump will be called Pinky.  We say for now because we have gotten a lot of response from people who didn't realize that many of the names meant anything or stood for anything and they would have changed their vote.  We also have had a lot of other names sent to us (or attempted) after the deadline.  We definitely don't want to make this a huge ordeal because, let's face it it's not, but it was way fun, so we'll put up another poll in a few weeks with the other names INCLUDING explanations.  Our fault for not including that this time.  However, it was fun to have a little interactive website for a while.  We also thought of putting up a poll in a while about what her first halloween costume should be.  Thought that would be fun.  Love you all.

Karsie and Her Clothes

All is still going well.  Karsie's bump still looks great!  It's getting pretty dry and looks like it's healing quite nicely.  Her feeds are up to 3 times a day and she's handling them real well.  She is up to 14 mL an hour and will be at 15 tomorrow.  This was adjusted again today because when they have to bottle feed her, she has to have her continuous feed turned off an hour before and after.  Therefore, she has to make up all of the mL she is losing from that hour in the other hours.  In other words, we have no idea what her goal is at this point, but at some point she will be just bottle feeding.  She is probably going to be increased to 4 times a day pretty soon now. Breathing is still going well.  On to the next.  

More Pictures

Brief Update (9-4)

We haven't gone it today yet, so we may have a lot more to say later on, but for now everything is status quo. When Michelle left yesterday, Karsie was on 12mL of breast milk an hour and if she is still handling it she will be increased to 13mL an hour. Her goal has been moved to 17mL an hour due to the fact that she is gaining weight, so in about 4 days, assuming there is no more significant spit up, she will be completely on breast milk: a major triumph for little Karsie. Breathing and bump (soon to be named "Pinky" it looks like) are still good. The newest part of the exposed skin actually looks a little better than some of the other parts. It looks very skin-like.

Also, we appreciate all the prayer for Kevin to start to feel better. He does. He is well and going down to San Diego this weekend. Hopefully, and we think this is the case, he was just very drained and started to feel a little vulnerable to being sick (which brought on some symptoms).

And the Snowball Rolls On....

We're not so sure what we're going to do if things continue to go this way other than run down the street flailing our arms about squealing for joy.  We know it's probably not wise to get so excited, but whatever.  

Preface:  

Before we get started, there is a poll up for naming Karsie's new belly.  We just couldn't make a decision because they were all so good, so we put up a poll and will let you all decide.  At noon on Saturday we will take the highest voted name and that will be what we call it.  We decided since Bob was the first name given to it, and us being all about gender equality, we would put up girl names (or references) to vote on.  However, even though we could only put up five, we absolutely loved the other names too!  You guys are so creative!  We'll make a special post dedicated to all the names submitted because they were so great!

Chapter 1:  Bottle Feeding

What could have been a struggle ended up a triumph of gluttony.  She INHALED her food and did wonderfully on it.  She did so well that what was supposed to be one feed a day starting today was immediately increased to two feeds today and further increased to three tomorrow.

Chapter 2:  More Feeding

She is up to 11mL and hour and 5mL TPN.  Starting tomorrow they will go up 1mL a day instead of .5 so she will be getting more feeds faster.  At this rate, she will be where she needs to be within a matter of days, and then they will start to try and bulk her feedings into 3 hour increments.  Meaning her goal at this point is to get to 16mL an hour breast milk.  Once that happens, the goal is to lump it all together, slowly, to getting 48mL every 3 hours....like a normal baby would.  They are also going to start to try to dry breast feed next week.  

Chapter 3:  Discharge Estimate

Yesterday we had a family conference and Kevin asked if they had an estimate for when she would be able to go home.  The doctor said that she would need to conference with the surgeons, other neonatologists, nurse practitioners, and nurses and get a rough estimate.  It is understood that this estimate is completely dependent on how she continues to progress.  It could go quicker, and it could go slower.  But they did give us an estimate.  Ready?  6-8 weeks!

Chapter 4:  Breathing

They are starting to try and wean her off of her nasal cannula.  The only thing they can wean her on at this point is her flow.  She is currently on 2 liters of oxygen flow.  She will be weaned to 1.5, then 1, and so on.  Our guess is that if she continues to do well, they will just go until she has no flow, which means they take it out.  We'll update you guys on when they start to do this.

Epilogue:  

Prayer request.  While Karsie is doing well, Kevin started to feel very slight signs of getting sick today.  He took off half a day of work to nip it in the bud and rest, but if he continues to feel sick tomorrow after work he will most likely not be coming down this weekend.  We're hoping it's just allergies or rest that is needed.      

What a Day!

If you want good news, keep reading.  We have plenty to share.

First and foremost, Michelle got to hold Karsie yesterday and today.  We thought the picture and Michelle's smile spoke way more than anything we could type.  Karsie went right to sleep and stayed calm when Michelle held her....both times.

Patch:  GONE!  We now need to find a new name for Karsie's lump.  Any ideas?  We'd love to hear them on the comment section.  Dr. Saenz came in today and took the rest of it off.  Her skin has done a Magellan and it covers all of the organs.  Now it's just time to toughen up.  The doctors are going to try and find a way to see if Michelle and Karsie can orchestrate skin to skin contact when Karsie is being held.

Feeding:  Still going strong.  TPN is slowly dying in Karsie's feeding.  It's down to 5.5, which means her breast milk feeding is at 10.5.  They did labs today and her bilirubin levels are down, which is fantastic seeing as they had been going up slightly.  The more she continues to feed the better she will do on that because the TPN will be decreased.  Also, even more exciting, is that tomorrow she will start to try to bottle feed.  They will do this for one hour a day and see how she handles it.  Moving on.....

Breathing:  Karsie is still doing well on her breathing.  She stays real close to 22% on her O2 levels, which is only 1% off of room air.  We think we're getting pretty close to having the breathing under control.

EEG:  Yup.  There was an EEG.  We didn't know about it.  Thank the Lord!  And, for all intents and purposes, it was normal!!  The doctor did say that there was some spiking happening, but she was also moving.  It's almost impossible for a baby to have a normal reading as they move, but all of the previous two issues that was seen is now gone.  She looks as normal as any baby would look at this point.  And moving on.....

Discharge:  So...the doctors are at least talking about that now.  Not that she will be discharged any time soon, but they seem to be getting their ducks in a row.  Michelle has been questioned on what kind of car seat she has and if we had found a pediatrician.  These are questions that are new and suggest a finish line at least on the horizon.  Again, it will still be a long time before she comes home, but the word "discharge" has been uttered.  

What a day indeed.....   

A Good Day

We Are Blessed!

On the day Karsie had her surgery to get "Patch" I stumbled upon a website that has turned out to be such a blessing for us. I was needing some encouragement that day... and that is exactly what I found.
Baby Be Blessed Dolls is a little organization run by a few amazing gals who love to sew and love the Lord. They have taken their talent and created these beautiful dolls. Each doll comes with a scripture patch right on the belly (fitting eh?). They have little girl and boy dolls as well as super adorable lamb dolls. I am in love with these dolls.Each month these ladies select a family to bless as part of their "Give a Blessing" ministry. For the month of September, we are that family! We are humbled and thankful to be a part of their ministry. And we are so grateful for the way this will spread Karsie's story and hopefully bring more prayers to the Lord on her behalf.
For those of you who have been following the blog, you have seen the progress she has made so far. We are convinced that her progress is a direct answer to the many many prayers lifted up by our friends and family and even people we have never met! We know this journey is far from over and we know your support will help us continue walking.
So, please check out the website, and continue to pray for our little miracle!

Groggy Karsie

Karsie had just woken up from a long sleep.  I'm sure many of you can relate to the faces she makes when you just get up in the morning.  

Very Brief Update (8-31)

Feeds:  Up to 9.5 mL B.M. and 6.5 mL TPN

Patch:  More taken off today.  Saenz said it was down to about a quarter of what it was originally. Hopefully Michelle will see it today and take pictures if she sees it during the night shift.

Breathing:  Still strong.  She was at 25% O2 and sating in the high 90's (which is good if you don't understand the jargon yet).

Announcement:  We may have a neat announcement sometime tomorrow unrelated to Karsie's medical needs but still Karsie related.

Pre-Delivery Pic

You get two this time.  This was taken during the act of delivery.  Michelle kept feeling like she was going to fall off the table because she couldn't feel her lower half, and the last thing she remembered feeling she was at an angle.  She also was shaking pretty bad from the medicine, so this was a lucky shot we got to come out clear.  This was literally minutes before Karsie came.
Kevin and Reva smiling, can't you tell?  Michelle is just to the right and under Kevin's right arm.  The anesthesiologist took this picture.  We liked her very much as she let Reva come in and she was very calm and reassuring.  

Update (8-30)

This is as close to holding as we get, but it's better than nothing. This is from Friday; when we are around for dressing and linen changes we get to pick her up. She wants a hi-five from her daddy but he can't give it since his hands are occupied.

Since this morning, Karsie has been continuing to do well. Michelle stayed home this morning and probably for the day because of a sore throat. She thinks it's just a little raw from the heat, but she's playing it safe. When Kevin went in this morning, Karsie was just about to go to 9mL an hour on her feeding and 7 mL on her TPN. We hope that scale continues to be lopsided in favor of milk. She was pretty upset at first, but then calmed down when she was picked up. Hopefully the doctors were paying attention to that. She gets real fussy at times and she screams so much she turns purple until she realizes she's not breathing. We haven't seen her patch since we took the pictures, but from what we hear everything still looks good.

Kevin had a nice visit, but had to go home again. Luckily next weekend is a long weekend.

Vanishing Patch (Graphic Pictures)

We just got it in under the wire, but as promised, here are her progression pictures. It looks much more gruesome than it really is, but this is the skin that needs to produce layers to eventually become her skin. Once this happens, she will be able to come home, provided her feeding and breathing are up to par. A little update: She was doing wonderful today. There was some spit up earlier, but they decided not to do anything about it since it was only that one time (and babies spit up) and also since it looked pretty digested, so her body is working. Plus, she is pooping regularly. Tonight we left her at 22% O2 (21% is room air) and her heart rate was down lower than we have seen it in a long time. She likes it when Amy is with her. Kevin has to go back tomorrow, but he had a good couple of visits while he was here. Now, without further delays, we present the Vanishing Patch:

This is Karsie's "birds eye" view. This is the only part of the patch that is still on the sides. As you can see her stitches are holding nicely, but at this point there isn't much need for them.
This is Karsie's right side. You can see the progression of skin changes as you go up from the bottom. All of that is healing the way it needs to. The black spot at the top has not been officially identified, but if you remember the pictures of the siloh from the beginning of her life, her liver had black spots on the top where they cauterized it, so we are fairly certain that is what is causing the darker areas.
This is, by far, the most telling picture of the amount of skin she has grown. Again, it looks like a bad scrape that is healing, but trust us, it looks better than this. It is pinker than the camera gives, but even so, she has covered her organs with her own "skin" so that's amazing. Michelle's hand is holding the diaper, but she actually was the one who pulled off the dressing. She's like a third nurse.

Adorable

Karsie is still doing very well.  She is up to 8 mL an hour on her feeding and 8 mL of the TPN. Unless there is some serious spit up tonight, tomorrow will be the first day that she outdoes the TPN.  

Pat looks amazing!  Kevin saw it live for the first time tonight and was very impressed.  In fact, tonight the nurse said that the surgeons were going to come by and take the rest of it off possibly today, but since they didn't it will probably be evaluated on Monday by Dr. Saenz. These seems to be the final days of Patch/Pat.  If Pat is still stuck to Karsie, then it is too soon, but if not, we may have to find another name.  

Speaking of the skin, we have some real good pictures to post of her current situation.  It looks incredibly gruesome, but it is not nearly as bad as it looks on a picture.  The camera catches a lot of the red color, but a lot of it is pink and skin-like.  We will try to post that tomorrow.  Just know that it is graphic.  

Until then, enjoy Karsie looking around (this is before they moved the tube from her mouth into her nose so she can suck on the pacifier and not associate the annoyance of the tube with her sucking...also it's a smaller tube).  

6 Weeks!

(Kevin) It's a little early, but I'm sitting at home getting ready for bed and anxious to get to San Diego tomorrow thinking about all that has happened in six weeks. Six weeks seems like an eternity ago that also flew by very quickly. For all of us that have been witnessing Karsie's story, just six weeks ago it seemed like any news was terrifying because she was so fragile. I can distinctly remember the first night sleeping just feet away from the NICU doors and every time the doors would open my heart would jumpstart. I was recently told by a friend that every time the phone rang those first few days they would be afraid to answer it. Yet, here we are, six weeks later and we're talking about reflux and crabbiness being problematic. How wonderful is that?

I am tempted at some point to post a huge list of all the odds that Karsie has fought through during this journey. I was recently running a list through my head of everything that she has had to deal with or overcome after birth, but thinking about before she was born and everything she has had to overcome just to arrive at birth was incredible too. Michelle and I are so blessed to have a front row seat to this miracle and we are so glad to share it with everyone. One day all of this will be behind us and we will get to take her home and show you all our miracle. I'm sure there will be moments of frustration and feeling down coming our way as long journeys fuel extreme emotions, but every once in awhile, like now, it's good to step back for a minute out of the brisk pace and look back at the long journey. It's been long, draining, exciting, terrifying, thrilling, humbling, shocking, and unbelievable. But through all of that we have been so thankful for the company. We are sure that many of you have felt all of those too for six weeks, so you know what I mean. Here's to the next six weeks! May God continue to watch over our little girl.

The Snowball Effect

Things have been looking so good lately that one of the Children's Hospital employees said to us that a lot of times when things start to look good and go well that it snowballs because the babies have more energy to spend on less problems, if that makes sense. For example, since Karsie's breathing has been getting better and better, her body is naturally able to concentrate on helping other problems like Pat, which is also getting better faster, which then gives her body time to concentrate on other things too. Hopefully this will continue to be the trend.

A quick update on our status: Karsie is still doing well. Pat is close to coming off the more the granulation tissue grows. They changed her dressing changes to every 12 hours, but then increased the amounts since, after 12 hours, her dressing was drying up and sticking to the granulation. Her feeds have been increased to 7mL, which is where we had to go back a few days ago. While this is good, her TPN level has been increase because Karsie continues to get heavier. She is currently over 3 kilos, which is almost 7 lbs. They are still going up .5 mL a day as long as she doesn't spit up. Her breathing continues to go well and she is tolerating the full 24 hours on nasal cannula. The only hiccup to that is she holds her breath at times because she has reflux. We think this causes her quite a bit of discomfort because she holds her breath and winces, which causes her to desaturate on her 02 levels. However, it doesn't take long for her to get back up once she stops holding her breath.

Finally, the occupation therapist came in and talked with Michelle, as we posted earlier, about how to play with Karsie, which has been great for bonding. She was read to last night and was fascinated by the pictures shown to her in the book. She stared at them intently. This is a new development since it was only a couple of weeks ago that she wouldn't focus for long enough to see a picture.

Kevin is coming back tomorrow which will be good for him to see his girls, but also good for the blog as most of our media (pictures, movies) is done from his computer, so this weekend the blog should produce a lot of that.

The Incredible Shrinking Patch

This morning, Michelle received a call from Dr. Saenz. This took her off guard (especially because she thought he was on vacation). He was calling to inform her that he had taken a look at patch and decided, because it was getting kind of loose, to take off 2/3 of the gore-tex. WOW! He explained that there was granulation tissue all the way up the sides, and across part of the top. The remaining part of Patch is stuck to the granulation tissue that is still forming, but he anticipates it will be removed within a few days. The mound of organs is now mostly covered with granulation tissue and some skin. The dressing changes will happen every 12 hours now instead of 6, and the dressing is the wet-to-dry dressing. This will help facilitate skin growth and healthy healing. This is all amazing news, and we are hoping that now that Patch is shrinking down, that will mean faster healing (like when you take the band-aid off the wound and it heals faster).
Another great report, is that Karsie is now off CPAP! She of course, can be put back on for a little help if she needs it, but as of today, she is on nasal cannula 24 hours a day!!! Hooray! She was breathing about 27% O2 today when we were in and doing well with it.
Her feeds are still climbing back up; she is at 6.5mL today.
Michelle was also able to meet with the Occupational Therapist who talked to her about how to meet some of Karsie's developmental needs while she is stuck in the isolet. She recommended a mirror toy, some small teethers, and books and music. The really great news is that we have been doing most of that already. We have been reading books with her for quite some time. We have the little mp3 player for stories and music as well (though we are having some technical difficulties loading the music). And today Michelle took in some little linking teether toys for Karsie to play with and suck on. Now we are on a quest for a mirror toy. The OT said that mirrors are especially calming for babies because they don't like to see other babies cry. Therefore if they are looking in the mirror, and the other baby (their own reflection) is crying, they will stop crying because it makes the other baby stop crying! How great is that! It also helps them with moving their neck because they like to see babies! Our little miracle! Patch (on a diet)... you can see where patch ends now if you look at the bottom left of the patch. Most of the sides are gone! Only the top circle and a small area towards her head remain.
Grandpa spends some time with Karsie.
Karsie is holding one of her linking toys (thanks Auntie Carolynn)! These are especially great because they have different colors and textures and they are thin enough for her tiny hands to hold onto!

And We Have Skin!

Tonight was an especially nice visit.
After the spit-ups from last night, we expected to see Karsie on 5.5mL of milk, but the nurse practitioner went ahead and bumped her up to 6mL. She will continue at her regular rate of increase (0.5mL a day) as tolerated. So if all goes well tonight, she will go to 6.5mL tomorrow. And though you might be getting tired of hearing it... she is still pooping which is fantastic news to us!
She was also increased to 8 hours on the nasal cannula tonight. So as long as she tolerates it, she will have 8 hours on and 4 hours on CPAP each shift. This is also great news!
The best news came during her dressing change. Our fantastic nurse, Amy, let Michelle help with the dressing change. While everything was exposed, Amy pointed out that the area where the patch was originally stitched was now skin!!!!! There are some places where it looks like as much as 1/2 an inch of skin has grown up!!! The patch is kind of moving up off the mound of organs. We are not entirely sure of the mechanics of all this, as the patch is/was sewn to her skin. But none-the-less, the skin is growing. There is still granulation skin at the very edge of the patch, but there is clearly new skin growing too! This is super great news because we anticipated this process taking much longer to progress. Granted, she still has a very large mound of organs for the skin to grow over, we are still pleased to see that the process is underway! We will try to get a picture of this soon.
Karsie is continuing to do very well considering all she has been through, and goes through each day. She gets messed with quite a bit... but she is a little trooper!
We are continually amazed by the power of prayer and the amazing support we are recieving. We still have a very long road ahead of us, but God is good and we are thankful for your faithfulness.

Pre-Delivery Pic

This is the scary hall that Kevin had to wait in while Michelle was getting anesthesia just before Karsie was born.  Note to any father waiting in the room:  Don't believe the doctor or nurse when they give you an estimated time to wait.  What was supposed to take 15 min. actually took 45-50.  It was not a fun wait.