To all friends and family:
This blog is intended to keep all of you posted on information, updates, and thoughts from the Turner family as we work to bring Karsie into this world. To all who have been supportive through prayer, kind words, and hugs we both want to say "Thank you" from the bottom of our hearts. This has been and will continue to be a very trying time for us and every act of love from you has given us inspiration and strength.
-Kevin, Michelle, & Karsie-
We have given Karsie an email account so when she is older she can read all of the support that was sent her way during this time. Feel free to write a note to her or a prayer for her. Write to her at karsiegene@gmail.com.
Not much is happening with Karsie except being in the NICU longer and longer and longer. They changed her plan to go slower with her increased feeding. She will be on a full day of pedialyte, a full day with 18 mL of breast milk, a full day of 35 mL of breast milk, a full day of 53 mL of breast milk, and finally a full day of 70 mL of breast milk. This is a full day of 25, 50, 75 and 100% of her total feeding respectively.
We're kind of puzzled as to why this plan is all of a sudden slower than the other plan because the only thing that has happened between the two plans was her brown residual, which they have told us is not a concern at this point. So we're not sure how going slower is going to help them decide what problem that brown stuff could be a sign of especially if they are no longer checking for it. And if they do think it's a problem we're not sure why they are not telling us and not looking for it anymore. I think we're just a little frustrated that we're going back to having the same issues we were having before with communication.
If you're keeping score this new plan will keep her there until at least Tuesday.
No one seems to terribly concerned with the brown residual but it did keep Karsie from coming home tomorrow. They started her back up on pedialyte and we will start this process all over. It was good that they stopped it, but the surgeon said that she needs to keep her bowel functioning. Unless she throws up more than her normal she will come home when they get her to full feeds, which at this point looks like Sunday or Monday. The brown residual was probably dried blood which may have come from putting in her ng tube that night or from something else, but she continues to poop which means things are going through. I guess we just wait and see...
We were about a day away from bringing Karsie home when we got a call from one of her nurse practitioners saying that they were pulling up brown residuals from her stomach. We're not sure what this means and what the residuals are, but they stopped the feeding. We're not sure if they have a plan, but we will have to go through the introducing food to Karsie all over again once they figure out what's going on. We of course understand the need to stop feeding, but we were so close to having her back and, to be honest, this is really starting to wear on us. We are going to wait for our surgeon who may or may not be in today to talk to us about the plan, but for now we just have to be patient which is not something we are good at in such an uncomfortable environment. We should know more later on today.
This morning Karsie had another abdominal x-ray taken and the results were similar to the last 2. She still has gas in her bowels, but there is nothing that jumps out at the doctors as a concern. Her labs from yesterday looked good. The labs that were pointing towards infection are coming down and if they continue to come down today the antibiotics will be stopped tomorrow. Today Karsie got started back on feeds. She was at 70mL feeds at home... so to ease her back into it, she is starting with 18mL of pedialyte. Then if she tolerates that for 24 hours, she will go to 35mL of breastmilk. If she tolerates that for 24 hours then she will go back to full feeds. This puts us at Friday afternoon as the earliest discharge. We were hoping for sooner, but we want Karsie to be eating well when she comes home again. At 12pm today, Karsie ate all 18mL of the pedialyte and was ready to keep going. Maybe this will be the boost she needed to get her eating by mouth?!?!? Another test that was run upon admission to Children's, was the liver function tests (to check her biliruben levels). The good news is that she was bringing those down too. Hopefully after a bit more of the medicine for that, her numbers will be all the way down! So now, we are waiting for her to eat and digest everything... praying for no spit-ups and good poops and a big eater! Hopefully this stay will come to an end very soon!
Still a lot of unknowns but Karsie is still doing well. She is being treated for a possible infection as some of her lab work is suspicious for that, but they won't be sure until about a day or so when the cultures have been grown.
Dr. Saenz came by and looked at her. He said everything by sight still looks real good. She had an xray done to see more but they couldn't find anything conclusive on that so they sheduled another one tomorrow morning without her dressing on to see if they could see more. She still had a poop today which is still very good news.
The plan is to continue draining her bowel and start her on feeds tomorrow at some time. The feeling from everyone, assuming she doesn't have an obstruction, is that she had a bug (or small infection) and she should be out in a few days. That's our hope too.
Karsie is still acting like Karsie. Mad as heck she is not eating, but still consolable and happy.
Kevin and Michelle are now home following an exhausting day at the NICU. Like good ol' NICU fashion the current plan is "we'll watch her and go from there." Well, we've been told more than that, but that quote did come from someone tonight.
At this point there is reason to be optimistic. She had been pooping, which still could mean an obstruction if it occurs in the upper part of the intestines and she is just cleaning out the lower part. She is not producing the green bile, which means food is passing through. Also, she is not continuing to vomit after we stopped feeding her. There is still a good possibility that there is an obstruction, but it seems that if there is it is small and we caught it right away.
Dr. Saenz wants her there for at least 12 hours to monitor her. They are deflating her stomach and bowels to give them a rest. Hopefully during that time (tonight) the bowels will work out the problem on their own. After that the goal is to "wake up" the bowels again by introducing the feeding. We were told by one doctor that this process will not be nearly as long as before and hopefully she will be eating and out of there within a couple of days.
Pinky note: There is a considerable change in the shape of Karsie's omphalocele. The best way we can describe it is Mt. St. Helens. Think of the mountain before it blew up verses after. Pinky looks like the top of the mountain blew off and there's kind of a crater now. When she breaths it goes up and down like loose skin. This very well could be the sign that her intestines are moving back into her abdomen, which could be the "kink" in the bowels.
Dr. Saenz came by and asked a few questions and looked at her. He said that the bowel still feels real soft and her pooping is a real good sign, so there's hope for good news. However, as he would with any patient that had once had an abdominal defect, he is going to keep her for 12 hours or so and evaluate her. They are going to stick a bigger tube into her stomach and deflating everything. They will watch it for this time to see what's happening.
We're hoping that she just caught a small stomach virus that they will catch and clear up, which is a possibility Dr. Saenz brought up.
All signs are pointing to a possible bowel obstruction. The x-ray showed enough to be concerned with but we were told that the x-ray is one of the lower levels of sight, so it's possible it's not an obstruction.
However, Dr. Saenz, who happens to be on call, is seeing us and he's in surgery so we are being admitted to the NICU until they solve the problem and are able to fully evaluate her.
Luckily we didn't have to wait in the waiting room with all the sick, flu-infested kids. They all seem to be interested in keeping Karsie away from possible germs. That being said we are still waiting.
We were called in to triage and then let back out. We then were called back and given an observation room (temporary room) and they ordered an x-ray. The first order of business is to rule out a bowel obstruction. Other than the throwing up there have been no signs of this, but nevertheless we are worried about that. That was the reason we went in today and didn't wait until tomorrow.
We're not sure what the next step is, but we figure there will be blood work involved (assuming there is no obstruction).
Once again we covet prayers. Karsie has not stopped spitting up today. We don't think she has taken much if any of her feeds. All of which have been by feeding tube today as she has been refusing any oral feeding. She is starting to throw up without much in her stomach which causes the heaving. She is very uncomfortable. Normally we would feel real bad and wait it out, but since she has Pinky to deal with we are going into the Children's Hospital emergency room to check her out. Hopefully we will have some answers soon. She's just not right...
It has been a rough couple of days for Karsie. She has been spitting up more frequently and is a bit more uncomfortable than we have seen her. We think her schedule changed a bit yesterday (Saturday) as she was completely zonked until the afternoon. Then she behaved a bit like she usually does in the morning. She also was awake much later last night than she usually is. We're not sure why that is after having such a good day the day before, but we are trying to fix the schedule issue.
We have also noticed that her spitting up is more frequent when we feed her by the tube. When she is hungry she eats quite well and she hardly ever spits up. However, if she is not hungry then she does not take the food orally, which means we give her the rest by tube, and she frequently spits up. We are on the cusp of calling the doctor just to play it safe. We're not concerned with an obstruction yet as there are not many indicators other than the spit up, but we are pretty sure there is movement in the bowel/stomach area as the shape has changed just slightly. It could also be moving back into her body which would create some discomfort.
Hopefully Karsie will pull through this soon so she can get back to improving her eating so she doesn't have to be tube fed.
Sorry it's taken a while to get this up. It's been a long day. A good day, but a long day.
Karsie is still gaining. She is now up to 7 lbs. 12 oz. That's up almost 5 oz. in a week. It's great growth for Karsie, but about average for a normal newborn. Her skin is still taking her calories away, but we're thinking Pinky will be complete before too long now, so that should speed up the process. The rest of the doctor's appointment went well. We go back in two weeks.
Eating is still going well. We have noticed that she is eating much better by mouth at night. She had averaged in the 30's orally until her 6:00 p.m. feeding today. She ate 72 and 60 at 6 and 9. She also loves eating by breast much more than the bottle. She took 54 and 72 during her two breast feedings today. We would do them all by breast but she needs the extra calories until her skin heals and she grows with only the breast.
Not an area of concern, but an area to watch. Her poop has slowed down a bit. Yesterday she had 2 stools and today she has only had one. Granted, that one was a doozy, but it's below her average. This is probably not a big deal and might even be good as it shows she is using her calories and not flushing them out, but it's just a change we're watching.
So we decided to crunch some numbers for an entire day today. We'll give them all to you and then sort it all out. Relating to Karsie's P.O. feeding (oral) she is being fed 8 times a day. This past 24 hours she has been fed 6 times orally and 2 times with just the feeding tube. Here are the times and numbers for each feed:
Midnight: Took 62 by bottle
3:00 - Tube only
6:00 - Tube only
9:00 - Took 34 by bottle
12:00 - Took 62 by mouth from the breast, 13 by bottle, and 8 from the tube.
15:00 - 38 by bottle
18:00 - 62 by mouth from the breast and 10 from the bottle
21:00 - 51 by bottle
All of these feeds were given the remainder to equal 70 except in the case of her eating more than she needed to.
Averages: When we left the NICU last week she was probably averaging about 20-30 mL orally each feed. That was on a good day. Eating 40 was amazing for her. Now, if you take her average of every feed, including the two feeds during the night when she was not offered the bottle, she is taking 41.5 by mouth each feed. If we take out those times and only count the times she is offered her feeding, she is averaging 55 mL per feeding. That's only 15 less than what she needs to be eating total. The real exciting news about this is that twice in one complete day she finished her feeding completely by mouth.
Our next step is to condense her feeding. We have condensed her to 40 min. (even though it really doesn't matter when she takes so much by mouth). After that we plan on waking her up for one of her night feeds every once in a while for the next few day and then doing it every time. We're working on her stamina and she is responding very well. Our doctor's appointment is tomorrow so we'll see how much weight she has gained. Her last weight was 7 lbs. 7.5 oz. Since then we have had all sorts of fluctuation from different scales, but none have been lower than 7 lbs. 9 oz. Hopefully we'll see a nice high number tomorrow.
In light of the fact that things have slowed down considerably, we thought we would open a blog entry up for questions. A few people have asked us a few questions that we have not covered recently, or at all for that matter, and we realized that there may be many more that we can and would love to answer. We will be happy to answer anything from a medical question to a personal question to any random questions you can come up with. We thought this would give everyone an opportunity to catch up, if you would like, or just satisfy your curiosity.
We will go back to this entry for a week and answer questions as they come.
As far as an update on Karsie, she is still plugging away. She's about to hit her cranky time of the day as she is waking up from her nap during our afternoon walk. She has been a little eater today as she has eaten on average about 40 mL orally. No real spitups to report. We have another pediatrician appointment Friday and we are curious to see how much she has gained. Think fat thoughts...
Updates: Karsie is still growing. We went into the G.I. (Gastrointestinal) doctor today to do a follow up on her elevated bilirubin levels. While waiting for the checkup they weighed her and she weighed 7 lbs 11 oz. That's up 4 oz. from Friday when we weighed her at the pediatrician's office.
To make things a little more interesting today, Karsie drank 100 mL of breast milk today during her 6:00 feeding!!! Granted, that's a bit high for her and she may barf some of that back, but it's wonderful to see that she can do it.
We had some very lovely visits today with some wonderful people. First, our pastor family (Rob and Debbie) stopped by to say hi and pray with us. We had a relaxing time just sitting and visiting with them. We also were able to visit two very special nurses to Karsie. We had a blast and love that Karsie is addicting!
We've been able to isolate Karsie's issues to just being grumpy in the late afternoon (incidentally, that's when Kevin is grumpy too...Karsie got his gene). Since we have discovered that, we have been taking her on walks around that time in the stroller, which she LOVES, and we get some exercise while Karsie gets a little ride/nap. This takes the edge off of her tantrum later and, amazingly, doesn't keep her up at night.
We do want to put out a special prayer request to all that have been so amazing praying for our little one. We have a dear friend who's baby, Kelty, is very sick and in need of prayer now. We will not discuss all of the details as we have not asked permission, but just know that she needs the support of prayer, and we know that we've got a good bunch of warriors that are connected to this blog. So if you have time, pray for baby Kelty.
After a brutal afternoon report (when Karsie usually gets fussy) we thought we would post this from the morning (when Karsie is usually happy).
Updates: A lot of attention lately has been paid to Karsie being home, and rightfully so, but we still have some hurdles to jump. First of all, she needs to gain weight still. Since she is out of the NICU we only do weight checks at the pediatrician's office, which we have weekly visits (our next appointment is Friday). She should gain weight by then, but the hope is that she gains a healthy amount. Last week when we took Karsie in to see Dr. Gorton, she showed us the growth chart and Karsie's status. She is well below normal for her age, but when you account for her prematurity, she is right on the cusp of the low range.
Another thing we look for to gain weight is to make sure she is keeping as much food down as possible. Since she has been out of the hospital, we are noticing either the same or a little less spit ups than normal. Yesterday being the exception (she had 3 pretty good sized barfs). The good news is that we can see she is working on suppressing the emesis when it looks like she will throw up.
Finally, her oral feeding is a big hurdle to overcome. First of all, it would mean that her ng tube could come out. So far that has caused a problem multiple ways. We have had to change it twice (I say "we" but in reality Nana has done it both times, and we know that was hard for her to do as Karsie HATES having that done). The first time the tube was clogged, so we had to change it. And by change it I mean take out the tube that goes from her nose to her stomach, pull it all the way out, then push, for 21 cm, the new tube back through the nose, down her esophagus, and into her stomach. Needless to say, there's a reason Karsie hates this. The most recent time was a sweet and a bit comical story. At around 3:30 in the morning, Michelle was changing Karsie's diaper. She had been up for 30 min. as it was her shift during Karsie's feeding, so Michelle was a bit tired and groggy. At that time the fire alarm went off for no reason whatsoever. In this sleepy state her maternal instincts completely took over any logic and she grabbed Karsie, who was still hooked up to the feeding pump, and took off for the door. The end result was that Karsie's tube was ripped out of her and Michelle was left standing on the front porch with her baby in her arms at 3:30 in the morning waiting for the fire to show up. Both Michelle and Karsie were crying. Luckily Karsie got over it quickly...like 20 seconds... it took Michelle a bit longer to feel better about everything.
Continuing on with oral feeding. Karsie has been doing very well on the bottle feeding. She has been letting us know when she is hungry, and is probably averaging 30 mL a feed when she is hungry. We almost had another full feed yesterday; she came up about 3-4 mL short. We also thought we were going to get a full oral feed this morning as she downed 30 mL in like 5 minutes. However, she was sleepy before her feeding and she slowed way down after we burped her and she ended up taking 46 or so.
Tomorrow we have a GI appointment tomorrow to make sure everything is going well with Karsie's gut. Sometime this week, we should be having a physical therapy appointment here at the house. We put Karsie on the Boppy pillow face down to give her tummy time (as a flat surface won't do with her omphalocele unless we want to see her do The Superman). She was able to lift her neck for a fraction of a second multiple times. We were very proud of her.
Every mother collectively sings: "A-ha!!!! Welcome to the club!"
Karsie has been a little pill this afternoon. She had a fairly good night and a good morning. We took her to church for the first time, we came home for a bit, and went out to Chipotle for lunch followed by a trip to target. Michelle used her Moby wrap, which she found a great position for her, and Karsie went right out.
Then we got home..... and oh the horror!
She started her screaming that we have come to think means hunger. So we tried to feed her. Didn't work. So we tried to wrap her up...didn't work. We changed her diaper...no luck. We had to feed her anyway, so we hooked her up to the pump. She screamed harder. So much so that it sounded like noises from The Exorcist. We were waiting for the green spewing. We tried to put her down...nope. We put her in the swing...that actually worked...for about 5 min. Then she realized she wasn't screaming and screamed some more. We finally found something that worked. Walking with her while carrying her and her feeding tube. We thought "oooh...she's out...let's try and put her down." She sniffed out that trick right away and began screaming once more. We are finally, after hours of screaming, not trying to console her. Michelle wrapped her up real tight and held her on the bed. They both, after a lot of work, fell asleep. This could be a good restful night for us, or it could just be a preview for tonight.
This is what an ex-NICU baby looks like when she takes her entire feed orally. First time! We think she actually took more.
Kevin was in charge of Karsie for a few hours while Michelle was at a baby shower. Karsie was very fussy for a long while. Kevin and Grandma Turner worked very hard to console her. They walked around with her...no success...they changed her diaper...no success...so Kevin stuck his pinky in her mouth and she almost sucked it off! The decision was made to feed her much earlier than her scheduled time as it was the only thing that would calm her down. So she took somewhere between 70-80 mL by mouth. She has been out since then.
Nice Gameday family photo. Those of you that know about my deal can see the Irish shirt under the jersey, so don't accuse me of going back on my deal. I'm still rooting for them (not to lose by more than 50). One day we'll get her to put up the victory sign. Her finger mechanics aren't working yet. After this season I have to get rid of the shirt. As you all can see, Karsie is not happy about me wearing this.
We took a nice family walk today with Nana and Grandma. Karsie really enjoys her car seat and stroller...just like every other baby. Even in her little donut.
So at this point Karsie is, at a minimum, a two person job. She needs to get fed every 3 hours. And by feeding we don't mean get up and bottle feed her. Since she has a feeding tube in we need to make sure, during her feeding, that she doesn't pull the tube out and have it go into her lungs, which would be very bad, and also that she doesn't throw up a big amount. Therefore, someone has to be up and watch her during that hour. So our schedule goes like this:
9:00 p.m. to 10:00 p.m. - Kevin and Michelle work together. Usually, Kevin gets the milk ready (we have to mix breast milk, rice cereal and formula to give her the extra calories and then fill up the syringes) and Michelle gets Karsie ready.
9:00 p.m. is also Karsie's dressing change. See "Changing Pinky" a month or so back.
10 p.m. to midnight - Kevin is in charge of any crying and soothing, but this is sleep time for us. Michelle pumps.
midnight to 1:00 a.m. - Kevin's shift. In charge of feeding and medicine.
1:00 a.m - 3:00 a.m. - Kevin again in charge of crying/soothing, but otherwise sleep.
4:00 a.m. - 6:00 a.m. - Michelle in charge of Karsie if needed. Sleep.
6:00 a.m. - 7:00 a.m. - Both shift. Karsie has woken up both mornings during this shift. She is very happy and playful during this time and a while after.
7:00 a.m. - 9:00 a.m. - Chores. Play with Karsie.
9:00 a.m. - 10:00 a.m. - Both shift for feeding. Dressing change. (By the way, there are four medicines that we use and during every feed we give the medicine depending on the schedule of the medicine. For this blog purpose we will not put every scheduled medicine down).
10:00 a.m. - noon - Chores. Play with Karsie, but she's usually asleep at this point. Also, Michelle pumps again.
noon - 1:00 p.m. - Both shift.
1:00 p.m. - 3:00 p.m. - Nap if time (one of us at a time).
3:00 p.m. - 4:00 p.m. - Both shift. Michelle pumps.
4:00 p.m. - 6:00 p.m. - Nap if time (the other one of us). Usually consoling Karsie as she is getting grumpy.
6:00 p.m. - 7:00 p.m. - Both shift.
7:00 p.m. - 9:00 p.m. - Get ready for bed. Michelle pumps.
The second night/day we were able to get much more sleep. Karsie slept through the night again, but we worked out a routine where we were able to get much more sleep in during the time we have reserved for it. So far she's been a fairly easy baby considering. We just have a million things to do FOR her....and we're loving every second of it.
Karsie in her crib. She loves sleeping in this. On Daddy's lap. Grandpa and Karsie are reunited after a short time apart. But it seemed much longer.
Karsie at her first doctor's appointment. Sounds funny to say after spending three months in the NICU. We LOVE her new doctor. This picture was right in the middle of a raging tantrum. We happened to calm her for 5 seconds to take this picture.
Karsie slept through her first night home. Kevin and Michelle did not. So far Karsie is handling the transition perfectly. She is not spitting up hardly at all. She had two wet burps (both after her Reglan). We also had a nurse come by and bring some feeding supplies yesterday. She stayed for a couple hours and helped with the pump that was delivered (that we ended up having to trade anyway).
Something to note: Karsie LOVES ceiling fans. She sits and stares at them for long periods of time. This afternoon she started to talk to it. It was quite funny.
Karsie's Future: We're not sure if we ever explained the plan after discharge since that seemed like such a huge hurdle, but now that we're here, we'll continue... At this point our next step is to continue growing and feeding. There's not a lot that will happen medically other than making sure she gains weight. We will continually make follow up appointments with our doctors to see if she is on the right track. In about 4 months we will see our plastic surgeon and have an evaluation to see how Karsie is doing and we will probably set up an approximate date for putting in her tissue expanders. Our last big hurdles come in about a year (we think). This is the tissue expanders followed by the closure surgery. The plastic surgeon will put in the expanders and stretch out Karsie's muscles and skin so when Dr. Saenz puts in the organs the muscles and skin can stretch around them and they can close her. After that, she's done other than follow up appointments and healing. But for now, we just keep her growing.
It took a little longer than expected, but we're home. Karsie is currently happy in Nana's arms as Michelle is "nesting" and Kevin has just finished carrying the entire hospital into the Royals' house. We are getting a visitor bringing many supplies to do Karsie's dressing change and feeding, but they weren't coming until 6, which meant we had to wait until at least 3 because she needed to be fed, which really meant 4:00 because it takes an hour to feed. Add in paper work and more paper work, it took us a little bit. But all is well in the house of Turner (and Royal). Now begins a new chapter of normal parenting worries as the training wheels are now off! Love you all!
It's official. Karsie will be coming home today. She will feed at 3:00 and then we will leave right afterward. Thank you for all the prayers. Now we move on to the next phase, but this phase will be done at home.
We realize there wasn't much information regarding her discharge, and updates haven't been real frequent lately, so here's the scoop:
Karsie has been having amazing days lately. She has all of a sudden started to gain lots of weight. Over the past week or so she has about averaged her goal at around 30 grams per day of weight gain (except tonight which is a prayer request we will get to). We had been hearing rumors for a couple days that we were within a week or so of discharge.
We have been also excited at Karsie's eating habits. At one point this past week she was taking close to 50 mL of breast milk orally. She has slipped a bit from that, but she is still doing quite well.
Anyhow, we knew the doctors had a meeting today to discuss all of the patients one by one (as they do every Tuesday) and we knew we were going to come up. Everything had been going well and we felt like the hospital wasn't doing anything that our pediatrician couldn't do. We thought they were going to give us a date in a few days, but instead they came in and said "So, do you want to take her home tomorrow?" Like we would say no to that.
We have a prayer request. Of all nights to lose a bunch of weight Karsie decided to do that tonight. Her trend is still good, which we think overrides one day's worth of data, but it's still making us nervous that they will look at the one day and decide to hold her day to day. The good news is that this is her pattern. She grows and grows and then loses, and then grows and grows and then loses. We hope they see this and pray that they still let her come home. She does need to continue to grow, but all of her treatment can be done at home, and all of her orders can be done by our pediatrician.
We will keep everyone posted tomorrow as it will be a long day getting everything ready and done. We hope to have our little one where she belongs tomorrow: with her parents.
To all who follow our blog, we would like to request your words:
We feel the end coming...soon. Karsie's story has been so remarkable, we hardly can believe this phase is coming to an end. However, it doesn't finish without serious recognition and credit to some very special people. The staff at Children's Hospital helped save Karsie's life, and we are well aware that we are not the only ones grateful for their commitment to our daughter.
In a normal situation we would buy a really big card and have as many people sign a quick note and thank you as would feel inspired to. However, our situation is a little different and we're not all together. So, we would request your time to write a quick thank you or note to our nurses and doctors who helped save Karsie. When Karsie leaves we will print them all out and give them to our nurses/doctors. You may email them to Karsie's email (listed at the top of the blog), to our email address kandmturner@yahoo.com, or leave a comment (but just know that some of our nurses read the blog so if you want a surprise it won't be on a comment).
If you would like to write a specific note, here are some names:
Primary nurses: Amy, Jamie, Lindsey, Ruth, and Heather (a new primary but still wonderful) - These guys are so very wonderful. They are the front lines of Karsie and have been there since the beginning. We do not have enough space to put all of our grateful thoughts down. (p.s. Ruth/Amy...we put all primaries in alphabetical order...there's no preference there in case that fight is still continuing :).
Surgeons: Dr Losasso - first surgery; repaired her liver and put on the siloh
Dr. Saenz - put on Patch and is her residing surgeon
Dr. Hilfiker - repaired Karsie's torn umbilical cord
Neonatologists: Dr. Settner - probably our favorite doctor. She really listens to us and tries to balance our concerns with normal practice. Dr. De la Rosa - Spent a lot of time at the bedside with Karsie. Dr. Knight - Saved Karsie's life by helping with the bleeding and transfusion. She also is the head doctor and bent the rules by letting our family in during times when they weren't able to. There are other doctors but most didn't spend a whole lot of time with us. We thank them all.
Nurse Practitioners: All of them were great help. Here are a list of names. Hope we don't forget any. Kylee, April, Barb, Pam, and Kim were present most.
We thank everyone. We get choked up thinking about our little girl without these people. Our story would not be the same. Please join us in giving a minute of your time to write a quick note. It will mean so much to them...and us.
Karsie cannot say thank you herself, so let's all join together and do it for her.
Quick update: Karsie's an eating machine lately on the breast. She took about 50 mL this evening, which is only about 20 below her total she needs. If she keeps this up she won't need her feeding tube long. She didn't have any spitups tonight, so we're hoping that translates into weight gain tonight. She's been very happy for Daddy this weekend. He will miss her tons after he has to go back Sunday morning. One day at a time.
Let's start with the bad news: Karsie lost weight last night. After two really good gaining days, she lost a good 45 grams. Hopefully she will just gain like 70 tonight and we'll be back on track, but unfortunately this seems to be her trend. We have a couple theories on this. First of all, she could just be needing more calories per ounce to manage her amazing skin growth. She is tolerating the 25 cal/oz much better this time, so we hope if she has to go up that she will do okay. We also think there's a possibility that the 25 cals is too nutrient dense and there's a possibility it's just going right through her and she's not getting as much. In other words the two days of good weight gain were residual from the 24 cal/oz and now her body isn't getting what it needs. This is less likely, but we wonder. The plan is to give her a couple days of watching and then reevaluate. We're a little bummed about all of this as it was looking like home was just around the corner, but there's good news to go with all of this.
Good news: Let's start with her oral feeding. In the past few days Karsie has really picked it up with the amount of food she takes orally. She took about 50 mL from Michelle's breast last night and 45 mL from the bottle from Ruth. Her average we would say has been about 15-20, but in the past couple weeks she has probably averaged in the 30's with some days being like yesterday when she is eating much more. We still need her to gain weight, but this could mean a much shorter time on the ng tube.
Moving on with the good news. Pinky looks awesome! We've talked about her skin growth (which is also probably a cause for her lack of weight gain) and how it's thickening and getting to the point where it will be completely skin soon, but we have not said that it is getting a bit smaller. Her body seems to be accepting her organs, and while it has not been confirmed by a professional, we have noticed a significant loss in Pinky's height. Her organs are moving and changing its shape, almost daily, but it really seems to be decreasing in size. We've started to measure it, so when we get a few weeks in we'll have some good data to put on here.
Developmentally, Karsie is doing so well. She is getting so good at smiling lately, which is right in the zone for her gestational age. Also, she is moving her head all around, she's showing neck strength, she moves her arms and legs around, she focuses...lots of good things all around.
Now...let's get growing girl!!! It's time to come home!
Karsie has been having a string of good days...knock on wood. She has gained another 30 grams today and we're hoping, as there has been little spitups, that she continues that trend. We'll know more about that tomorrow afternoon.
We are very excited to find that she is now smiling AT us. She is quite the little playful thing. Keep praying for growth!
Yesterday at 6pm, Karsie went back up to 25cal/oz. The hope is that she is older and will be able to handle the increase this time. We are just going to have to wait and see how she does this go around. If she is grumpy and upset again, or if she spits up too much, or if she doesn't gain weight... then we will have to try something else. Karsie did gain weight last night (60 grams) and hopefully that is the start of a trend?!? She has been averaging 1 spit-up/shift (5-20mL). She has also been doing a great job eating by mouth. She is increasing her average breast feeding intake to 25-30mL each time; she has also increased her bottle intake to 15-30mL each time. It is nice to see her working hard on eating by mouth. We will be able to take her home with the NG tube, but wouldn't it be nice to not have to (or not need it for too long). In other news, Kevin is planning on coming down again this weekend... after 2 full weeks of being home and we are both very excited about this! Yay for Kevin spending the weekend with his girls :)
Nana and Karsie snuggle. Grandpa has a last visit with Karsie (due to flu restrictions, he will not be able to see her until she comes home). Sleeping so comfy! Karsie is still on 24cal/oz. She is tolerating it fairly well with fewer spit-ups and she is a much happier girl. She still isn't growing the way she needs to be growing. She has averaged 5grams a day for the past 3 days (minimum growth for her would need to be 15-30... with 30-60 being the goal). Pinky looks great and our surgeon anticipates all skin within 2-3 weeks! We are not sure what the plan is for getting Karsie to grow, but somehow it appears she will need more calories.
First of all, Karsie has been doing well since being backed off of 25 calories. Today she has had only one spitup, which was very small to begin with, and overall she has been having only one or two since being backed off (which was on Saturday). She has been seeming much happier since then as well. We are hoping that all is accompanied by weight gain.
She lost quite a bit of weight a couple nights ago we think due in part to her getting medicine that flushes out her system. That naturally takes away their weight. Yesterday she gained a bunch of it back, but we're still not seeing the consistent weight gain that will get her out of the hospital. We hope that since she is not throwing up as much that she will be able to grow, but much of her food goes directly to Pinky.
Listen up Karsie. It's this simple: Gain weight = Go home.
We had another family conference today. We asked to hear the general plan for Karsie and (as we suspected) there isn't a set plan because right now everything is trial and error with her. The goal is growth. The only real plan is for the doctors/dietitian to come up with some kind of regiment that will get Karsie to grow and keep most of her food down... That is, at this point, the last hurdle. Karsie will most likely come home with the feeding tube and some meds and we will tend to those things at home and with her pediatrician. So the big goal for the hospital care is to get her to grow. She is still on 24cal/oz and tolerating it well (again). It is possible, but unlikely, that she will grow with the 24cal. If she doesn't grow, there will be another attempt to give more calories (and some extra nutrition) in a format she can tolerate. So our huge prayer at this point is that she will either grow with the current recipe, or the doctors/dietitian will be able to come up with a recipe that will help her grow... and also that we would have patience as the process goes on.
As for her daily update, she has only had 2 spit-ups since last night. One was a fair amount (20mL-ish) and the other was more of a wet-burp of 3mL. She is stooling better and appears to be much more comfortable than when she was on the 25cal/oz. We are hoping that we will start to see some weight gain now since she is spitting up less!
The hospital is preparing to shut-down (on Wednesday) to all visitors due to the H1N1 flu, the RSV flu, and the seasonal flu (the flu trifecta). This means that Grandpa will no longer be able to visit Karsie until she comes home. Nana will be able to go in on evenings with Michelle while Kevin is out of town, but when Kevin is in town she will not be allowed in either. We are glad that it has been put off this far, but we are even more anxious for her to get home with the new policy.... and the fact that it means flu season is fast approaching, and we want her out of the germ-infested hospital.
Friday: The doctors agreed to take the extra calorie out of Karsie's food. She is back on 24 calorie and doing slightly better. Her stooling pattern has returned to her normal and her spit-ups have gone down considerably in volume. Friday, she was also taken off the multi-vitamins and the reglan (med for helping with reflux). She got a transfusion of Grandpa's blood Friday evening to help with her energy. She took 28mL breastfeeding and around 20 from the bottle. Saturday: Saturday her feeding was left alone but she was put back on the reglan to try to help with the spit-ups. She had fewer spit-ups and the volume was still low! She is also continuing to have a more regular stooling pattern. She didn't do as well feeding orally as she can, but we didn't push her either. We are trying to make every oral/eating experience positive... so if she shows us she isn't interested, we try to let her be the boss with it. If she eats and then throws up, she didn't get the nutrients anyway and she then begins to associate eating with bad feelings. Pinky still looks amazing. It is over halfway covered with real skin, and the rest is good granulation tissue. Still no growth.
We are hoping that Karsie will be able to grow on the 24 calorie food and begin to take bigger feeds by mouth. She will have to show a good amount of growth before she will be able to come home (even if she has the feeding tube still). Hopefully this week we will see a few steps forward.
It has been a couple days of Karsie having a tough time. About four days ago Michelle started noticing Karsie seemed a bit "off." They added an extra calorie (up to 25) about that time and we don't think she is handling it very well. She has handled the condensing fine and everything else okay, but this extra calorie an hour has seemed to put her over the edge. She is throwing up quite a bit more, she's more fussy, and she has started pooping different and less regular. She also has stopped gaining weight (we had a string of days where she was gaining, but then it just stopped). Michelle is pretty sure that it is due to this extra calorie (motherly hunch).
Today they decided, with Michelle's input, to take her off of the extra calorie and keep her at 24 calories per hour. They also are taking her off of a couple medications that can be hard on her stomach. We hope this does the trick and she's back to her normal self, but we are worried that she spent enough time working hard on her digestion that it has done some damage and we will have to backtrack quite a bit. Think about when you eat a bigger meal than you're used to with foods that aren't nice to your digestion and then think about doing that every three hours for four days straight. It could take a while for your body to recover from that. We're hoping that's not the case and she bounces right back from that, but we'll see.
Today we were able to fit Karsie with the device into her car seat. There will be more adjustments made, but it is looking very nice. The orthotist was even thoughtful enough to give it a cute pink strap! Karsie enjoyed being in the car seat, until one of the straps was adjusted and gagged her... and then she broke in the car seat by spitting up all over it!
In other news, she is now in a private room in C-Pod! What luck! Her weight stayed the same again and she had a couple spit-ups yesterday. She still hasn't been condensed down to half-hour but she is now being offered the bottle/breast 6 times a day (8 will be the goal here). She did breastfeed very well today, and is continuing to take around 30mL each time she feeds orally. Hopefully tomorrow she will go to 30min feeds. Everything is baby steps with her... we can only change 1 thing each day regarding her feeds because we want to know if it worked or not. If we change too many variables, we don't know what worked and what didn't. So baby steps it will be.
