Gagging

Maybe I didn't knock on wood hard enough... or maybe it was fake wood... but the Karsie has had a little bit of gagging today. We are desperately praying that it goes away. We are not sure what set it off because nothing changed until later in the day today (after it started). We are trying to vent her tonight and hopefully she will let some air out of her tummy and the gagging will be done, but if not it would be a safe bet that she'll go back down on her feeds.
She is currently getting 22mL an hour and it is now 24cal/oz. The formula is being fortified with duocal so she doesn't get overloaded with calcium and vitamins from Elecare. She started that this evening, so we are not sure how she will handle it.
Karsie is also still growing. Tonight's weight would put her at just over 9lbs, but the weight might be a little high and will likely come down slightly over the next couple days (her bed scale is a little touchy and the weight tonight was a 115 gram jump).
We are feeling down about the gagging... and we are praying that it stops and was just a little air in the tummy. Please pray with us that Karsie will be able to digest her added calories and that the gagging is over. We are ready to have her home again...

Back to the C

Karsie is continuing to do well (insert the sound of me knocking on wood).

She is up to 21mL an hour of 22cal Elecare. Tomorrow she should go up to 22mL and then over the next few days her calories would be increased. We are not sure how many calories she will need per ounce, but there are a few different options for how to get there being tossed around. We will start with increasing the caloric value of the Elecare. If that doesn't work, there are a few different ways to add MCT oil or possibly flax seed oil. We are trying not to use rice cereal this time as it can slow down motility... and Karsie already has super slow motility (hence the g-tube/fundo).

Karsie is still growing. The last two days she has slowed down her growth a little, but still growing. Over the last 7 days she has grown better than any other time in her life! That is amazing :)

This afternoon Karsie was moved back to C-pod (the step-down unit). We are not in a private room, but we do have a good amount of space. We are hoping this means they plan on sending her home soon!

The nurse practitioners from the NICU and GI talked yesterday about some flavor options for Karsie in regards to her oral feeds (since she HATES Elecare). They decided to let her breast feed!!!!! She has a 5 minute time limit so she doesn't eat too much. Last night she didn't do well. She really just wanted to look around and see what was going on, and eating was taking away from that. Also, she has been taking her paci so much lately (which we like) that it can make the transition a little tricky. Tonight however she breastfed like a little champ! She ate for all 5 minutes and then I had to give her the paci back because she wanted to keep going. She gave me a great milk drunk face and fell right to sleep. That was a great moment! She might not get back to plain breast milk for a while, but what a treat to get to nurse her again!

Karsie is now up to 20mL an hour on her feeds... but the pump is only running for 22 hours a day! That means that in the evening she has a 2 hour break from food. The goal is to get to 20 hours a day (a 2 hour break in the morning and another in the evening). The other goal is to get up to a good volume (approx 130mL/kilo/day=520mL/day=26mL/hour) and then modify the calorie content so she will continue to grow. The process is very day-to-day... and based on provider preference. Therefore, we only know the general outline and not so much the day-to-day plan. Thankfully we are at peace with this plan and are feeling ok about taking time with it.
Karsie is still a fun little bug! She is active and awake lots now and she loves to play and have books read to her. It is so fun watching her develop! She smiles all the time!

Christmas Bug

"I love me some linkys!!"
"Look at me, I am so sweet in my Christmas outfit! Thanks Aunt Darla!"

It seems the backtracking has helped. Karsie is now up to 18mL an hour of 22cal Elecare. She is doing very well on it and not really gagging at all. She had another bottle attempt yesterday and didn't gag but didn't enjoy the Elecare (yuck). We are now asking about having her take breastmilk by bottle to make the experience more pleasurable.
She is growing a lot! She has grown well for the past week... and she is now more than 8 1/2 lbs. While I still want her back on breastmilk... I have to say that the Elecare is working well to keep her growing!
Karsie's skin is continuing to heal, but it seems her body might be prioritizing general growth above skin growth. The granulation tissue growth has slowed down a bit. Her g-tube site and fundo incision both are healing nicely.
We are pretty ok with the plan being a little slower... in hopes that if we take our time, there won't have to be much backstepping again. We are ready to have Karsie home with us yesterday... but we want her to be healthy too. And for now... as much as we don't enjoy the hospital... we are enjoying every minute with our little bug! She is amazing :)

The Climb Begins Again

After 36ish hours of staying at 15mL/hour, Karsie has begun to climb back up towards a goal of at least 21mL/hour. She is going to go up once or twice a day depending on how she is doing each day. If it seems like she is getting more gaggy she will stay longer at each volume. If however she is handling well, she will be increased. The trick now is to find her tolerance level and then not go over. Then, once we have a good volume for her, we will see about increasing calories.
Karsie is still doing well in all the other areas! Her skin is still healing well... the granulation tissue is about 2in across now! Her incision from the fundo/g-tube is healing nicely and the g-tube stoma (hole) is healing well also.
Karsie is a lot of fun these days. She is so happy and interactive most of the time. She LOVES to play with her toys and look at books or pictures. All the nurses are saying how comfortable she looks and how fun she is to watch. We feel the same.

Happy Karsie But The Soap Opera Continues...

Thanksgiving was great!  We were able to have the whole family together (minus one of course) and we got to go see a happy Karsie during the day.  

Today was back to the roller coaster that is our life now.  Karsie has been gagging quite a bit lately and really starting to retch.  If this had been before she had the fundoplication she would have been throwing up quite a lot.  It really started to pick up today as she was doing it many times during the hour.  So we got a call from the hospital today while we were out shopping (if you avoided shopping today you lucked out).  They said that they have backed her down to 15 mL an hour (she was at 25) and are going to go up slower to see if they get to a point where she starts it again.  The thought is that she is just hitting a wall and is unable to handle the volume. If that is the case they will increase her calories to make up for the lost volume so she can grow and get hydrated.  She's still growing and pooping so that has been a plus, but we've taken a step back.  We're pretty beat up about this because this seems to be the story every time.  We get real close and then we have to go back and start all over.  The good news is that they still seem to be talking about how they can get her home even with all of this stuff happening.  But for now our stay has been extended a little bit longer.

When we eventually went in today Karsie was alert and happy the whole time.  Since being backed off she hasn't gagged nearly as much, so we're hopeful this is something fixable soon. As of yesterday she was about 8 lbs. 7 oz so she is still growing.  Slowly but steadily.  We want her home for Christmas, so if any of you want to get us something great for Christmas call up Children's and tell them what to do to fix Karsie to get her home.  Blessings...  

Thankful... Part 2

Because who doesn't like a little more thankfulness (especially if it comes with some pics)!!

Over the last year... 

We started here:

Then we became three:
Now we are here:

What AMAZING things we have to be thankful for!

Happy Thanksgiving!

"Ooh, shiny...I'll take those!"

Technically it's Thanksgiving now, but we still get to go to sleep for a bit before the feast. Speaking of feasts, Karsie gets to feed by mouth tomorrow for the first time in a few weeks. We are excited to see her get some food. However, we're not on breast milk (yet); we're on Elecare, so she will probably hate the taste, but hopefully not eating for weeks can persuade the pickiest of eaters.

She is currently getting 19 mL of formula every hour which translates to 58 mL every 3 hours (she was at 70mL when we took her back to the hospital). She is continuing to increase 1 mL of volume every 6 hours. Unless you're an amazing mathematician (hi Todd) we'll just tell you that it means she will be at her admission volume tomorrow night and at her approximate target volume (78 mLish) Friday (they increased her target volume because of her weight gain and age). She has been tolerating her feedings well so far. She did gag pretty hard tonight only a couple of times, but they said she could do that due to the fundoplication (and she has lots of saliva too). However, she's pooping like a champ so things are moving through.

We think if everything goes perfectly that we could be out as soon as early this next week. That's our hope at least. She is weighing about 8 lbs. 5 oz. That changes day to day, but we think we've hit her actual weight (she was much heavier after surgery as she retained fluids).

Finally, Karsie has been very content and downright happy lately. She just sits and stares for long periods of time trying to get everything in. In fact, we can tell that she is about to just crash but tries to stay awake because she wants to look around. She has started to talk a bit (cooing) and smiles very easily. She still has a pretty weak neck as she has been on her back for weeks and weeks, so we've decided to try and get her to practice holding her head up when we get a chance. She was doing fairly well tonight, but we can't do any of the natural things to help her with that like tummy time or holding her over our shoulder (as babies practice holding their heads up then). So we are trying to encourage the skill.

In the spirit of Thanksgiving... we wanted to acknowledge some things we are thankful for!

First of all we are thankful for our new family of three! We are so happy to have our incredible little Karsie Gene. She is such a fighter and she continues to amaze us. We are so glad to be on this journey together. We are able to pull strength from each other daily and neither of us could do it without the other.
We are thankful for supportive families. We are so grateful for the love and support they have offered. We are thankful for a place to stay in San Diego to be close to Karsie. We have enjoyed being able to spend time with our families.
We are thankful for incredible friends. We have friends all over offering to help us in any way they can. We haven't had to worry about things like a bum refrigerator or mail or the sprinklers. Having friends to come along and help lift some of the load has made a huge difference.
And we are thankful for prayers. We are overwhelmed (all the time) by the comments, emails, letters, calls we get from people letting us know they are praying for the three of us. We know that is just the tip of the iceberg. We will never be able to count all the prayers that have been sent up on our behalf... and for that we are incredible thankful.
We are blessed!
Wishing you a VERY Happy Thanksgiving!
Kevin, Michelle and Karsie

Happy Girl!

Sorry for the lapse in blogging... I have been a blog-slacker for the past few days.

Karsie is a trooper! She is up to 11mL an hour of feeds (Elecare 22cal) and will increase to 12mL at 1am. She is handling her feeds very well and moving it through! She did go about 48 hours without pooping, but then this evening she had a nice big poop! Someday Karsie will give us a hard time for broadcasting her bowel movements... but we are happy for the poops! She is also urinating a lot and getting rid of all her excess fluids from surgery.
Today she got her 4 month immunizations. She was given Tylenol in advance and was also given emla cream (numbing cream) so she didn't feel the 4 injections. She took it like a champ and didn't cry! She was a little more fussy this evening and you could tell she was sore.
She has been really alert and happy lately though! This is so fun! She likes to play with her linky toys ("Thank You Aunty Carolynn") and watch everything that is going on around her. We have to cover her eyes to get her to take a nap because there is so much to watch (she is on the monitor... don't cover a sleeping baby's face at home). She smiles all the time and really is just a fun happy girl!

A Very Special Thank You Part II

The three of us want to put out a special thank you to two incredible prayer warriors who have prayed every day since we can remember for our little girl. We know there are many more little ones that pray for Karsie and we thank all of you.

Thank you Garrett and Payton for your continued faithfulness to our family. You are helping Karsie every day with your prayers.

4.07 ??????

This afternoon we walked into the NICU to see Karsie's weight posted on her growth chart.  It read 4.07 kg which is basically 9 lbs.  This was an enormous increase from the day before and we were sure that it was a mistake, but it was exciting to think that she beefed up that much.  Sure enough we came back today and it was 3.775 kg which is 8 lbs. 5 oz roughly.  Even that might be slightly inflated as she has the G-tube now part of her weight and she has a few extra wires and such, but we're pretty sure that she is at least 8 lbs. now officially.  

Karsie has been increased to 2 mL per hour.  We thought that the order was going to be to increase by 1 mL per hour every 6 hours or so, but that didn't happen.  However, she has been changed to Elecare which is a formula, so that was a change.  They will go very slow at first and the hope is that if she tolerates it they will increase her feeding much more quickly.  

Thanksgiving is a good day not just for us eating but for Karsie as well.  They are giving her throat and esophagus a rest for a while as it has been hit hard by acid, surgery, and her being intubated.  However, we have decided that Karsie will get a Thanksgiving treat by getting to eat by mouth.  By then she should have ample time to heal her throat and from her surgery, so we want to try to give her a pleasurable experience with eating. 

Bit of News... and a couple pics!

Today Karsie was started back on feeds! Yay! She started VERY slow at 1mL an hour continuous. She has been tolerating it well; and if she continues to tolerate it, then she will be increased tomorrow (by an unknown amount). She is on pedialyte today and sometime within the next 24-48 hours she will be moved to Elecare. She will need to get up to full feeds of Elecare and tolerate that before we transition back to breast milk (but that is still the goal).

As promised, here are a couple pictures of our baby's tape-free, tube-free, beautiful face!!

Post-Op Day 3

Not much new today. Karsie is post-op day 3 and resting lots. She is still on Tylenol and Ativan for pain and to help her relax. She is breathing on room air and doing very well. She is a little "junky" sounding in her breathing, but nothing to be worried about... just a reaction to being intubated. She is still having a little bit of drainage through her g-tube which is also normal.
This afternoon she got rid of the NG tube that was being used to suction her esophagus. So, she is now tube/tape free on her face! Pictures will follow!

The other GREAT news in her post-op status is POOP! She has had two little poop smears today as well as a decent sized poop! Yay for working bowels! That is really great news. It means that her insides aren't too angry after surgery. It also means that if all continues to go well, she will get to eat tomorrow. We are not sure of the exact plan for feeds, but we do know she will start with pedialyte and things will go slow.

4 Months!

Well, not quite 3 months gestational age, but 4 months from her birthday. It doesn't seem like that long and at the same time it seems like forever.

Karsie has been doing very well today. She was extubated at about 2:00 p.m. and has done fairly well ever since. She has a nasal cannula for now until she can keep up her saturation level for a consistent amount of time, which we hope will be early tomorrow.

She was quite upset tonight when we went in, but not too terribly bad. This could just be that she was fussy or that she was too tired to really scream it out, but she went to sleep after a while and looked pretty comfortable. We hope that they manage her pain better than last time after she had surgery, but we're not counting on it. Part of the problem is that it's hard to tell if she's having pain or if she's just fussy, so that's not the doctors' fault, but when it's obvious she's uncomfortable we're expecting something to be done. So far it hasn't gotten to that level. She is on Tylenol only now and she seems to settle down after she gets it.

This is her G-Tube. It's a little blurry but you can see it comes right out of her skin. Her stomach is on the left side of her omphalocele so it sticks right out of there and it's only about a centimeter deep. That little tube that's dark (which is old blood from the surgery) comes out and you can plug the tube like a beach ball. Dr. Saenz said it's very fragile right now, so we're not sure what that means and when we can hold her, but for now we're staying away from that. We have had to put little mittens (or socks in this picture) over Karsie's hands so she cannot grab onto the tube.

We may start feeding tomorrow with pedialyte or we may just be waiting another day to give her body a chance to recover. We suspect the latter, but who knows. We're just praying for a quick recovery and that it works for her growing.

Continuing...

Not really much news other than what we posted earlier.  Dr. Saenz was able to do everything he planned to do without any trouble even with everything in her belly "cattywompus" (that was his quote).  He's planning on going real slow on the feeds, but he will be working with the NICU on how slow.  

We were able to see her briefly before we get kicked out at 6:30 and she looks good.  She has elevated blood pressure and heart rate and a couple other things that happen normally after surgery, but it's something to keep an eye on.  As soon as she wakes up the plan is to extubate her as long as she breaths fine.  

Post-Op

She's out!!!  Our nurse just came in and told us that the surgery went well and she's out.  We're not sure what happened and if they were even able to do both procedures, but the nurse wasn't told otherwise, so it looks like they did.

What we do know:  Her blood pressure stayed steady the whole time.  They started an IV in her foot to give her blood if she needed it (it was Michelle's donated blood) but we don't think she did need it.  She is still ventilated but it's a pretty low setting and she should be able to have that out when she wakes up.

We have a tough little cookie on our hands.  But we're not sure we're tough enough to do this too many more times.  We're both ready to throw up now.     

(Taken before the surgery)

Karsie's In

It took about an hour longer than was scheduled, but Karsie was just taken into surgery.  Dr. Saenz said it typically takes between 55 min. and 2 hours, so he said we'll say about 2 1/2 hours to play it safe.  We would not be at all surprised if it took that long or longer as Karsie's anatomy is not normal.  

Saenz went over the procedure again and it sounds tricky, but possible.  He did say that he would back out of the fundoplication (the procedure that will make it hard to throw up) if he could not do it safely.  He will have to fiddle with the liver a bit to get to the area he needs to do the fundo but each fiddle messes with the blood flow from the liver to the heart, so the less the fiddling the better.  

And the countdown begins...it was much harder letting her go this time around.  

Playing Before Surgery

Hopefully it's a good sign that she is having a day like this before she goes in for surgery. We thought that since it's been a while since we've posted a picture or movie we'd get one in before surgery. We are obviously terrified but hopeful and it's good to see our little girl happy and playing before tomorrow.

Quick tidbit before tomorrow: She has hit 8 lbs as of yesterday. She will hover around that for a few days probably, but the TPN and lipids seem to be giving her a little extra help.

This will be our last post until surgery time (unless something worthwhile happens tonight). We will try and update all of you as things happen like her other surgeries. Like a family friend told us today, we'll be praying like crazy around 1:00 but by dinner time we hope to be giving high fives and rejoicing.

24 Hours of Prayer

"Dear Lord, please be with our little girl tomorrow as she goes in for surgery. We are so blessed to have her and have the opportunity to love her, and we thank you. Be with her surgeon and give him the wisdom to use his amazing gifts and talents you gave him to help Karsie. Be with all the staff that helps out and let them know that they are assisting your miracle on the table. Give Karsie your comfort and strength as she goes through this again. Please give her back to us. Keep her safe and healthy so we can continue to show your love to her. Amen."

Questions Forum

Surgery is scheduled for Monday at 1:00 p.m.  

We had a few people question some things about the surgery on other posts, so we thought we would put this up to answer questions.  Like other forums we will continue looking back at this for a week and answer questions as they come until then.  

We will start by answering questions on the comments section asked by some of you on other posts.

Poor Little Bug

Surgery is in Karsie's future. We had a bedside conference and with our surgeon, a neonatologist, a nurse practitioner, a nurse, and a social worker. Here is the basic outline of our conference:

Problems: Reflux... The doctors have decided that the problems with the emesis has to do with her reflux. When they took the barium pictures they saw an unusually large amount of reflux, which was more than they originally thought. The NICU often sees reflux get worse the older the child gets, so Karsie is losing lots of nutrition and could be losing more if nothing is done. Thickened bowel... This could be something as simple as her bowels are recovering from a virus, could be that she is just gassy, or could be something else that we don't know yet.

Solution: What was proposed to us was a procedure called fundoplication and a G-Tube. The surgery is where Dr. Saenz goes in and wraps Karsie's esophagus around the tear-shaped portion of the stomach creating a sphincter that basically makes it next to impossible for Karsie to throw up. They would then insert a G-Tube into her stomach which has an outlet sticking out for us to feed which bypasses the esophagus and goes directly into her stomach. If she had to throw up for other reasons other than reflux it would be released into the G-Tube somehow (we're not all sure how this all works yet). This would allow us to feed her continuously (instead of 70 mL every three hours we would feed her around 23 mL every hour). She used to throw up more when we did this, but we think this is due to the reflux as she was getting food continuously.

We feel like this could be a solution, but we're not thrilled about another surgery to stress through especially when the surgeon admits that this is a tricky surgery based on her anatomy. However, we are confident in our surgeon. We do not have a time yet because Dr. Saenz is looking at his schedule and will let us know when there is an opening.

Technical Difficulties

Our internet has pooped, so our report is late and by phone. Disregard the typos.

Karsie spent the day digesting barium, which is what we all want to do on a Wednesday when we want to relax: try to break down the atoms of a metal. The only real news that we got was what was overheard and it wasn't really news. However, our surgeon has scheduled a family conference tomorrow at 3:00 to talk with us. That could be good or really bad.

We have a feeling we are going to be given options of a few surgical procedures we can do to help Karsie's digestive issues. But we honestly have no idea.

The good thing about the barium study was that it gave a series of pictures that the doctors can use to see how Karsie's process goes. Hopefully that gives them anotomical information to figure out what's going on. The last picture was taken at 700 p.m. so we have no information as to what was learned.

We'll know more after out meeting tomorrow...

Sleep Time

Karsie got a PICC line in.  Dr. Suttner called us tonight and asked if she could try to put in a line in a deeper vein.  The vein she had to use was in her jugular, which is on the side of her neck.  In order to do this Karsie had to be sedated, which also meant she had to be intubated during the procedure.  It only took about 30 minutes and they got it in.  When we left Karsie still hadn't woken up, but she was breathing over the machine, so as soon as she wakes up tonight she will be extubated.  She had a long night so hopefully she is getting some needed sleep.  

On to day 2 filled with barium and GI studies.  We will probably be getting a call in the morning, since Dr. Saenz seems to like to work in the morning, about the study or the results.  From there we don't know where we go.  

Results Part I

Dr. Saenz just called.  The good news is that it still doesn't appear to be an obstruction, so surgery for that is probably not in the picture.  However, it did show lots of air/gas all the way through and the lining is thickened. So something is keeping it in there, but we're not sure why and they're trying to find out.  

The long term prognosis is unclear but tomorrow the studies continue.  Karsie will have an upper GI and the goal is to see what the anatomy is like.  Saenz thinks the problem is mechanical, so this may lead to some kind of tube going directly into the stomach.  It may be a lot of things, but until it gets fixed none of those things are good.  

Post CT Scan

Karsie is out of the scan.  We are out of the NICU now as they are doing a sterile procedure on her (PICC line).  Hopefully they can find a good vein and get it in.  

Good news:  They didn't have to intubate her.  That saves her poor little throat from having to deal with more issues other than the acid that has been hurting it by throwing up for so long.  

We should be getting a call at some point in the next couple hours to tell us that we can come back (in other words they either got the PICC line in or another line) and information on the CT scan.