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.

CT Scan Underway

Karsie is getting her first test done now. The goal is to not have to intubate her, but they are giving her just enough medicine to put her asleep, so if she doesn't handle it they will have to intubate. The pictures will be ready within minutes, but when they get read is anyone's guess.

The next test may come later if the CT is inconclusive. That would be an upper GI where they put barium in her bowels and watch the flow.

Finally, they are going to put a central line in after the CT scan. If they can get a PICC line in they will do that, but if not they will call the PICU and have them do one.

More updates later...

Update

Just a quick update...
Last night around midnight Karsie had a tube (larger than her feeding tube) placed from her nose into her stomach to try to deflate the bowel and empty the stomach. That tube produced some pretty icky stuff. It was a yellow/brown fluid that looked like poop... possibly backing up into her stomach as a result of a blockage. Since the initial stuff came out, nothing else has come out of the tube.  Not good news.

 
Another concern last night was that her blood cell count was lower than normal.  Because it looks like she will be going through tests and many more pokes, she received a unit of blood which helped bring her red blood cell count up. She is also getting IV antibiotics. Last night her CRP (test that shows infection) was about 12 which is high and this morning it was down to about 8. This means she is reacting well to the antibiotics. Her white blood cell count came up (another sign of possible infection).

This afternoon she will be getting a CT scan to try to get some pictures of her abdomen.  This seems to be our best shot at determining whether she has an obstruction or not. Unfortunately, she will have to be sedated for this. She might also have to be intubated (put back on the ventilator). The intubation would only last as long as she is sedated. While sedated, she will also have a PICC line placed so it will hopefully be still enough for them to put in the line without blowing a vein. If the CT results are inconclusive, then she will have the GI study (a barium swallow and a barium enema) that tracks fluid through a series of x-rays to see if they can see any kind of blockage.  

Again we're torn on how to feel.  On one hand we hope that they find nothing and she is not obstructed.  However, that means there is something else wrong and this guessing is not fun. On the other hand if they find that it's a blockage, it's at least an answer to why this is happening, but it's a scary answer.  There's no real way to hope here other than wait and see and then hope for the best outcome from whatever is determined.  

You are loved Karsie.  Show us your fighting spirit yet again... 

Tests

It has been an incredibly stressful couple of days for us.  Karsie seemed to be doing fine on the formula mix.  Then she started to throw up.  Today she threw up literally every feeding.  All of it. She's not keeping anything down.  She lost a ton of weight and her white blood cell count skyrocketed which could be infection or just a sign of swelling.  So, again the scare of a bowel obstruction is in the picture.  

Tomorrow (today by the time anyone reads this) Karsie will undergo a series of tests.  We're not sure what tests they will run but they will be to determine if she has an obstruction.  The real kicker was when she threw up the final time before they cut her feeds entirely and it smelled awful.  Kevin thought it smelled like sulfur while Michelle and the nurses thought it smelled like poop.  That's a bad sign.  

She's being put on antibiotics again and probably going to get a blood transfusion.  She had an IV put into her head and probably going to get a PICC line (or try to put one in) put in sometime tonight or tomorrow.  This seems to be a much longer stay in the NICU than we anticipated.  We know it sounds redundant, but we are so emotionally beat up right now we're not sure how or what to feel.  It always seems to be something.  

Crying Over My Spilled Milk

The newest development in Karsie's care came about yesterday when the GI doctors came to visit. They had seen her once while she was out of the hospital and will continue to follow her. They decided to put her back on the erythromycin to help improve her bowel motility. They also talked about the possibility that Karsie might be having allergies to something in my breast milk. Babies aren't allergic to breast milk, but can have allergies to things the mother eats and passes into the breast milk. Since I have been pumping since July, and we use the oldest breast milk first, Karsie has been drinking milk from August/September. There is no way of knowing what is in the milk that might be causing her to spit up. If she was home and breast feeding, we would be able to play with the foods I eat and try to rule some things out. However, even if we were to take in fresh milk, the delay in feeding at the hospital as well as the charting burden this would create, we would be hard pressed to be able to play with the breast milk in the same way. Therefore, Karsie will be placed on Elecare formula (hypo-allergenic, lactose free). She tolerated this formula when it was added to the breast milk, so it was the logical place to start. If she tolerates this without spitting up, then we can assume that she is allergic to something in my milk. If she continues to spit up, there are several other formula varieties to try. If she continues to spit up on all the different varieties, then we can assume that she is just a spitty baby and possibly return her to breast milk. Another option to be played with at some point is if Karsie needs higher calories in less volume. This can be done with either formula or a breast milk/formula combo.

All of this is a bit controversial. I have worked VERY hard to keep my milk supply up in hopes that someday Karsie might exclusively breastfeed. I also feel VERY strong about the benefits of breast milk, especially to a "gut" baby. However, I realize that the reality of Karsie's situation is there might be something that is better for her at this time. Don't get me wrong... I know that formula babies are just as happy and healthy as breastfed babies... and that in the long run, everything will work out... but this is the one thing I had complete control over. I read books about nursing and pumping and I was prepared for this. When Karsie was so sick and we couldn't do anything for her... I could pump and save my milk to heal her when she could take it. I have been blessed by a good supply of milk. I haven't had problems with pumping or storing my milk. Albeit, I hate pumping, but I have control over that.

I will continue to pump to keep up my supply in hopes that someday Karsie will be able to nurse again... I might spend some time staring into the giant freezer full of milk and crying... I might be "that" mother, the one that nurses her kid until she is old enough to ask for it, because I felt like I missed out on nursing in the beginning... I might end up having a giant freezer full of hard work to donate to someone else's sick baby... I might retire my rental pump sooner rather than later...

In the mean time... I am going to enjoy holding my baby and feeding her bottles of stinky formula.

Quick Update

Karsie's PICC failed again last night.  Her veins just keep blowing.  We hope that with the volumes she is on today and later that the PICC will not be as necessary, but it was the hope that the nutrition would help her make up for lost weight/nutrition.  We're pretty certain that when her peripheral IV goes then we're done with the IV's which actually could be a bad thing as she may need fluids and has no veins left (easy ones) to accept it. Let's hope she does not need any for a long time.

We should have another update later today when we come back from the hospital. 

Congratulations to our friends Ryan and Kerri for getting married today.  We are so sorry we are stuck here and cannot make it. We'll dress Karsie up fancy for you guys today.   

Poked

If there was a word to sum up Karsie's day today... it would be "poked."

Let me rewind and start from yesterday afternoon.
When we left in the afternoon, Karsie needed to get another IV (this makes #6 since being readmitted). We came back in the evening and she had the IV and was getting a really low dose of TPN and lipids. We felt pretty good about the extra fluids and calories. Karsie ate like a champ yesterday and last night and today. She has handled her feeds fairly well with her usual occasional sit-ups. Today the doctor called and wanted to put in a PICC line (an IV that goes into a central vein). This way Karsie wouldn't have to have a new IV every other day. A PICC line is also ideal for TPN because the TPN itself can cause tissue damage if it leaks out of the IV, therefore a central line is better. Getting a PICC is a sterile procedure, so we stayed until the ladies found some good veins to try for the PICC and then we said goodbye. A little later, we got a call saying that after 4 tries, the ladies couldn't place a PICC and were not going to try any more. We got in to see Karsie this evening and she has a new little bald spot on her head and 4 different bruises from the attempts... and no PICC. While we were visiting, the nurse was concerned about the IV that she had in her arm, and so the nurse practitioner was going to try for another PICC line in her leg. We are hopeful that this one will work as Karsie is running out of good veins for IV's and we don't want her to be poked anymore than really necessary.
Tonight at midnight, her volume goes up to 60mL every three hours and we are hoping she will continue to handle her feeds with minimal spit-ups.

The TPN has given Karsie a little boost in energy and the nurses would agree that her personality is back to her normal NICU-self (still different than her home-self).

We Have a Plan

Kudos go to Tammy, our nurse practitioner today.  We understand that everyone tries to keep us involved with planning, but Tammy really sat down and took a good chunk of time to hash out a plan for Karsie and for that we are incredibly appreciative.  The key now is that this plan is either kept or we are involved in changes as they need to be made.

Problems:  Karsie is now not handling her full feedings as she has been off of it for so long.  Dr. Saenz continues to be doubtful that it is an obstruction, so now our goal is to work on feeding and growing.  However, Karsie is not doing as well as she was doing at home.  She is tired and defeated.  Also, she is not gaining weight and is, in fact, losing quite a bit of weight.  This problem is a downward spiral.  She needs to eat to gain weight, but she can't eat because she can't tolerate her feeds, which makes her tired and then causes her to lose weight.  

Solutions:  Our plan is to start her taking 50 mL of breast milk every 3 hours.  She did not eat enough when she was able to take it on her own, so we are going to have to use her feeding tube, which hopefully will increase her weight/stamina and cause her to eat more orally which will get her to eventually take the tube out.  We have a little leeway to play with during her 3 hours.  If she is hungry the nurses (or we) will feed her orally until she is done as long as she gets at least 50 within the 3 hour time limit.  We also are slowing down the rate that she is fed by tube since she tends to throw up on the tube.  The plan is to give her a chance to feed orally every feed.  What she doesn't take will be given to her by the tube.  If she takes over half they will give her a small break and tube feed the rest over the hour's time.  If she takes less than half they will immediately put her on tube feeding over the hour.  This way she is not overworked during that time and her body has time to digest without getting pummeled with food.  This hopefully will get her to a point where she tolerates bigger volumes.  Finally, the plan is to increase her volume by 5 mL every 24 hours.  With no hiccups this will take approximately 4 days to get to full feedings again.  We then will start to think about adding in the extra fortifiers as she needs extra calories to continue growing that skin of hers on her belly.  We could be in for a while longer, but this definitely beats surgery.  

The final part of the plan that we really like is that it is written in the orders to contact us before any huge changes are made.  We're not sure how this will be delivered and followed through on, but we feel our opinion is at least being taken seriously for the time being.  That's all we ask.  Thank you Tammy...

Update

When we left the NICU yesterday, we were fairly convinced Karsie had/has a bowel obstruction. This morning, we spoke with the Nurse Practitioner and she said Dr. Saenz still doesn't think it's a bowel obstruction as she is pooping still and other signs are not pointing to it.  However, they are still not ruling it out.  After a lot of discussion today among the doctors and nurses (none of which included us) we have yet a new "plan" that we actually like but we are a little nervous as to how it will be run.

Today Karsie has been put on an "ad lib" plan for feeding. She is allowed to take as much as she likes every 2-3 hours as long as she meets a minimum for her weight.  The nurses and doctors are convinced (and so are we) that Karsie self-regulates her need for food.  In other words, when she stops wanting food, she lets us know and forcing her to eat much more than that could make her throw up.  The hope is that she will self regulate and get to a volume that allows her to grow but doesn't overfill her little belly. So they put her on a system where Karsie calls the shots.  When she is hungry, within 2-3 hours of her last feed, they will feed her until she doesn't want food anymore.  It's very similar to what normal babies do, just keeping very close tabs on it.  This doesn't yet solve any problems if it's an obstruction, so we believe they are treating it as if it is not and calling the emesis (throwing up) Karsie not being able to handle full feeds the way we were giving it to her.  Thus the switch in plans.  So far today, she has done very well with this new plan. Her feeding has gone as follows:
12pm- 38mL
2pm- 32mL
4pm- 31mL
6pm- 55mL
8:30pm- 37mL

She has to get to 180mL every 12 hours. She has met the goal for the first 12 hours already (she is one feeding away from her first 12 hours and already hit the quota).  They give her this "minimum" quota to meet as anything less would dehydrate her. We are a little nervous about the night shift as she is a good sleeper, and if she isn't sufficiently awake, she likely will not eat as much. However, the last time she was on 1/2 feeds (35mL) she ate every 3 hours by mouth just fine.

 
She is not on TPN yet (the nutrition that is good for her but hurts her liver after a while), and as of right now she doesn't have an IV. She had an infiltration on this one (which makes #5 IV that she has lost since last Sunday).  This is where basically the small vein can't handle the pressure of the IV and it starts to go elsewhere causing it to puff up the skin.  She also doesn't have her NG feeding tube, so she cannot be lazy about eating! We are hopeful the doctors will give her a couple days on this plan so she realizes she has to eat by mouth and cannot rely on the tube.  We don't want them to go with this plan and then freak out over a little setback when they have been changing the plan so much lately.

 
Her belly x-ray was less gassy today than yesterdays, but still semi-gassy. Which basically tells us nil. She always has had some gas but because everything is all jumbled together in her belly, there is no telling how it should be normally. 

We are hopeful that this plan will allow Karsie to eat like a normal baby and she will get as much as she needs at a pace that is good for her. And we are hopeful that this will work and she will get to come home without a tube and eating everything by mouth (which would mean more sleep for us)!!

The Pendulum Swing is Killing Us!

We were less than 24 hours from taking Karsie home and then she took a pretty big step back. Kevin was holding her and she started to throw up.  While she is a pretty spitty baby, this spit up was pretty dark yellow, a sign of possible obstruction.  They did another x-ray and it came back a little worse than the other x-rays taken.  

At this point she has been backed off to 50% feeds, an order by Dr. Saenz, and they are going to give her a chance to fix it on her own.  Dr. Saenz is coming in tomorrow to take a good look at her and write out a plan.  We're sure that they are going to exhaust every option before surgery, but to be honest, we're thinking that surgery is on the horizon for Karsie.  

They are going to be putting her back on the TPN and fat tomorrow because it's been a long time since she has gotten her full feeding, so she's not growing.  They are probably going to be doing some extra tests to see what exactly is going on.  

This is very upsetting to us as she was doing so well lately and it is very possible that we are going to have to start all over again.  We hope that she can correct it on her own, but we're not counting on it.  We're so exhausted with all of this and feel like we're being pulled in so many emotional directions that it's starting to take a toll on us.  So again we return to the prayer well and ask for more.

Catching Up!

Sorry we've been out of commission for a few days.  It's been an incredibly busy time for us. We had a fun time with Karsie on Halloween.  But she was one angry cow during picture time in the NICU.  We had to shove her arm into one of her sleeves as her IV was in the way (we made it work).  She is pretty grumpy not being at home, which we kind of enjoy.  However, she was REALLY grumpy Halloween.  Many nurses came by to look at her costume, and even though we didn't get a good picture of her being happy, she did have a long time where she was content.  

Yesterday we celebrated Michelle's birthday by taking a day off and going to Disneyland.  We visited Karsie at 6 a.m. and returned to the NICU at 10 p.m. just in time to see her sleep both times.  Since Michelle gets a free day at Disneyland on her birthday, we took advantage; plus with our friend Dave having the same birthday, it led to a good day of everyone in the park saying "Happy Birthday" every 5 minutes.  It was exhausting, but very fun.  So, we didn't get to update you guys for a while, but we're back now.

Karsie:  She has been doing fantastic!  The plan is still to be out of there sometime Tuesday, but incredibly we're still not sure what the plan is even though we've asked.  There are some details that are a little confusing.  She has not thrown up at all as of 5:30 this morning.  We're not sure about after that.  She has been on 100% of her feeding since midnight last night, so we assume that midnight tonight they will increase her calories to 22 with rice cereal.  That should get us finished by Tuesday at noon; unless they want to observe her for 12 more hours, which would put us at midnight, which would mean they would extend our fun little stay until Wednesday. The other thing Karsie has been doing is eating orally almost all of her feeds.  She is pretty tired from midnight to 6 a.m. (who isn't) so she usually has to be fed through a tube at that point, but every other feeding she has been eating all of it.  Hopefully this continues with her 100% feedings so we can get that tube out soon.  We should have a vision of how she is doing and how she will do later on tonight.  We hope to have some pictures of her coming home....again.